In his original report on the syndrome of early infantile autism, Leo Kanner (1943/1968) indicated that autism was a congenital disorder. Although a minority of children seem to develop autism after some months of normal development, most of the subsequent work on autism has generally supported his contention (see Volkmar, Chawarska, & Klin, 2005, for a review). This observation would also be highly consistent with the large body of work supporting a genetic basis for the condition (Rutter,

highly consistent with the large body of work supporting a genetic basis for the condition (Rutter, 2005). Somewhat paradoxically, however, our knowledge of autism as it is expressed in the first year of life is quite limited. Fortunately, within the last decade this situation has begun to change. A little more than a decade ago various factors acted to delay case detection and early diagnosis (Siegel, Pliner, Eschler, & Elliott, 1988), but now various programs specifically focused on early

(Siegel, Pliner, Eschler, & Elliott, 1988), but now various programs specifically focused on early diagnosis of infants at risk for autism have been developed. Growing public awareness of the condition and an increasingly large body of work on the importance of early intervention and stability of early diagnosis (National Research Council, 2001) have increased interest in the early stages of autism. A growing body of research work focused on this age group has begun to appear. In previous years

A growing body of research work focused on this age group has begun to appear. In previous years most of this work was based on either parent report (Chawarska, Paul, et al., 2007; Cohen, Volkmar, & Paul, 1986) or review of videotapes or movies (e.g., Osterling & Dawson, 1994; Werner, Dawson, Osterling, & Dinno, 2000), with all the attendant problems associated with the lack of contemporaneous methods. The first prospective longitudinal studies of young children (Lord, 1995; Lord et al., 2006)

The first prospective longitudinal studies of young children (Lord, 1995; Lord et al., 2006) and the recognition of the importance of early intervention has stimulated the National Institute of Mental Health to set the ambitious goal of reducing the number of children with autism through early diagnosis and intervention. In this chapter we are concerned with issues of the clinical expression of autism in infants. Although our major focus is on infancy and early childhood, some of the work on

autism in infants. Although our major focus is on infancy and early childhood, some of the work on preschool children is highly relevant and is touched upon as well. We attempt to highlight areas critical for future research on this important topic.

AUTISM AS A DIAGNOSTIC CONCEPT Kanner’s Original Report Kanner’s (1943/1968) original report contrasted the lack of social interest (autism) with the normative marked predisposition to engage with others in reciprocal interactions; he carefully framed his observation developmentally by citing the work of Gesell on the early emergence of social interest in the first weeks of life. We now are aware that this interest is present from birth in the typically developing infant. Since Kanner’s first

that this interest is present from birth in the typically developing infant. Since Kanner’s first description, the diagnostic concept has undergone modification based on research and clinical work. At the same time, the diagnostic conceptualization retains important historical and conceptual continuities with Kanner’s first description. Kanner emphasized the centrality of the social difficulties, as well as the presence of a set of unusual behaviors he subsumed under the term “insistence of

as well as the presence of a set of unusual behaviors he subsumed under the term “insistence of sameness” or “resistance to change.” These unusual behaviors included unusual movements and mannerisms as well as problems in dealing with change and novelty. Of the first 11 patients described in his report, only one was below age 3 years when Kanner first examined him and three children were between the ages of 3 and 4 years. Although Kanner emphasized the uniqueness of the condition and its

the ages of 3 and 4 years. Although Kanner emphasized the uniqueness of the condition and its apparent difference from schizophrenia, other clinicians tended to assume some form of continuity of the two conditions. This issue was clarified over the next several decades as longitudinal and other data made it clear that autism formed a distinct diagnostic category. As a result, however, Kanner’s early focus on “early infantile autism” was lost and most research focused on school-age or adolescent

focus on “early infantile autism” was lost and most research focused on school-age or adolescent children.

DSM-I and DSM-II: Confusion with Childhood Schizophrenia In the first two editions of the Diagnostic and Statistical Manual of Mental Disorders (DSM) only the term childhood schizophrenia was officially available to describe autism. This situation was very unfortunate. Subsequently, the work of Kolvin (1971) and Rutter (1972) made it clear that autism was distinctive and could not simply be considered an early form of schizophrenia (Volkmar & Klin, 2005). Furthermore, available research

considered an early form of schizophrenia (Volkmar & Klin, 2005). Furthermore, available research suggested that autism was a brain-based disorder and not a result of deviant parent–child interaction. In parallel with attempts to provide better definitions of adult psychiatric disorders for research (Spitzer, Endicott, & Robins, 1978), similar attempts were made of childhood-onset disorders like autism. Among the investigators of this time, Rutter (1978) provided an important and influential

autism. Among the investigators of this time, Rutter (1978) provided an important and influential synthesis of Kanner’s original report with subsequent research. Rutter suggested the importance of four essential features: (1) early onset, (2) distinctively impaired social development, (3) distinctively impaired communication, and (4) unusual behaviors of the type suggested in Kanner’s concept of “insistence on sameness” (resistance to change, idiosyncratic responses to the environment, motor

“insistence on sameness” (resistance to change, idiosyncratic responses to the environment, motor mannerisms and stereotypies, etc.). Rutter was clear that the social and communication difficulties were not just a function of associated intellectual disability. These various issues were considered as autism was first included in the landmark, third edition of DSM (DSM-III; American Psychiatric Association, 1980).

DSM-III and DSM-III-R DSM-III (American Psychiatric Association, 1980) represented a marked change from its two predecessors. The taxonomy proposed was based on research findings and emphasized the importance of an atheoretical and empirically based set of criteria. Autism was included in a newly designated class of childhood-onset disorders, Pervasive Developmental Disorders (PDD). A “subthreshold” condition was included as well, atypical PDD; this term had considerable (if unintended)

condition was included as well, atypical PDD; this term had considerable (if unintended) overlap with earlier terms such as atypical personality development (Volkmar & Klin, 2005). The definition included in DSM-III was heavily dependent on Rutter’s earlier conceptualization and provided for a clear differentiation of autism from schizophrenia. Interestingly, the original DSM-III approach lacked a developmental orientation and, if anything, the criteria proposed were much more appropriate to

a developmental orientation and, if anything, the criteria proposed were much more appropriate to very young children with autism, that is, consistent with the term infantile autism. Although the use of a multiaxial approach was a clear benefit for child psychiatry, some aspects of the organization of this system were confusing—for example, autism and related disorders were placed on a different axis than other developmental disorders. A much more developmental orientation was introduced in

axis than other developmental disorders. A much more developmental orientation was introduced in DSM-III-R (American Psychiatric Association, 1987), which was greatly influenced by the work of Lorna Wing (Wing & Gould, 1979). Although the now familiar three major areas of dysfunction were still included, the new criteria were much more detailed and included a range of examples (with the goal of producing an approach applicable to the broad range of age and developmental levels). The use of a

producing an approach applicable to the broad range of age and developmental levels). The use of a polythetic approach was also adopted, and the requirement for early onset was dropped (although onset before or after age 3 could still be specified). The official name of the condition was changed from infantile autism to Autistic Disorder in reflection of these changes. Although many aspects of the DSM-III-R approach were improvements, it quickly became apparent that the system tended to

of the DSM-III-R approach were improvements, it quickly became apparent that the system tended to “overdiagnose” autism, particularly in the cases of more intellectually challenged children (Rutter & Schopler, 1992). This observation led to the potential for major difficulties in the comparison of studies using different diagnostic criteria and also posed problems for pending revision in the International Classification of Diseases—tenth edition (ICD-10; World Health Organization, 1990). The

Classification of Diseases—tenth edition (ICD-10; World Health Organization, 1990). The ICD and DSM approaches are fundamentally related and share many aspects of diagnostic coding, although there are also important differences.

ICD-10 and DSM-IV Extensive revision of both the ICD and DSM systems was undertaken early in 1994. As part of the DSM-IV revision process (American Psychiatric Association, 1994), attempts were made to identify areas of both consensus and controversy such as clinical utility, reliability, and descriptive validity of categories and criteria. Coordination with the pending ICD revision was also a consideration. Literature reviews and data reanalyses were also undertaken for specific issues, such

Literature reviews and data reanalyses were also undertaken for specific issues, such as those relative to the concept of Childhood Disintegrative Disorder—a concept included in previous versions of ICD but not DSM. Data reanalyses suggested that the DSM-III-R approach was overbroad, and a decision was made to undertake a large multinational field trial (Volkmar et al., 1994). This field trial was conducted in coordination with the ICD-10 revision effort and included more than 100 raters

was conducted in coordination with the ICD-10 revision effort and included more than 100 raters working at more than 20 sites around the world. The final sample included information on nearly 1,000 cases seen by one (or sometimes more than one) rater. In the nearly 1,000 cases, more than 300 children were less than 5 years of age (although most were between ages 3 and 5 and no child younger than 2 was seen). A standard coding system was used to provide basic information on a case and rater and

2 was seen). A standard coding system was used to provide basic information on a case and rater and on a number of diagnostic criteria. The overall results of the field trial (see Table 1.1) confirmed that DSM-III-R had a higher sensitivity but lower specificity, whereas the ICD-10 draft definition, designed to be a research diagnostic system, had, as expected, higher specificity. A series of analyses were undertaken, including reliability of criteria and diagnosis, factor analyses, signal

analyses were undertaken, including reliability of criteria and diagnosis, factor analyses, signal detection analysis, and so forth (Volkmar et al., 1994, Klin, Lang, Cicchetti, & Volkmar, 2000). As expected, social criteria were, as individual diagnostic items, generally the most potent single diagnostic predictors, and a decision was made to weight them more heavily in the final DSM-IV definition. Possible modifications in the ICD-10 system were examined, the goal being to have convergent

Possible modifications in the ICD-10 system were examined, the goal being to have convergent definitions in the DSM and ICD. The final diagnostic approach provided reasonable coverage over the range of syndrome expression in autism as reflected in the field trial sample and was applicable from early childhood (i.e., at about age 3) through adulthood. It must be emphasized that the DSM-IV and ICD-10 approach did consider developmental aspects of syndrome change, but, not surprisingly at that

approach did consider developmental aspects of syndrome change, but, not surprisingly at that time, the focus was not on infants and very young children; that is, it appeared that the approach derived worked satisfactorily starting at about age 3. Interestingly, examination of some of the DSM-IV field trial data (children under age 5) reveals a few items with stronger developmental correlates. In general, such items were discarded because they would not be applicable to the entire range of

In general, such items were discarded because they would not be applicable to the entire range of syndrome expression. For example, attachment to unusual objects has low sensitivity (.50) but high specificity (.90), so that when it is observed, it has high predictive power for autism but only in this younger age group. Interest in the earliest development of children with problems included in the autism spectrum was also fueled by inclusion of additional disorders within the revised PDD section

autism spectrum was also fueled by inclusion of additional disorders within the revised PDD section of DSM-IV (e.g., Asperger’s Disorder, Rett’s Disorder, and Childhood Disintegrative Disorder). A need to differentiate these disorders highlighted the importance of understanding developmental history and early clinical presentations. At the time that DSM-IV appeared (1994), there was little concern with the manifestation of autism in infants and very young children. For children by about age 3,

with the manifestation of autism in infants and very young children. For children by about age 3, the DSM system appeared to generally work well with reasonable stability of diagnosis (Lord & Risi, 2000). However, with the growing interest in genetic mechanisms, screening of at-risk populations such as siblings, and the marked increase in research in the earliest manifestations of autism there has been progressively more concern about autism as it is manifested in infancy. We consider these

has been progressively more concern about autism as it is manifested in infancy. We consider these issues before returning to the problem of early diagnosis.

|          | n   | DSM-III a       |        | DSM-III-R       |        | ICD-10 b        |        |
|----------|-----|-----------------|--------|-----------------|--------|-----------------|--------|
|          |     | Se              | Sp     | Se              | Sp     | Se              | Sp     |
| Overall  | 940 | .82             | .80    | .86             | .83    | .79             | .89    |

| Overall  | 940 | .82             | .80    | .86             | .83    | .79             | .89    |
| By IQ level|     |                 |        |                 |        |                 |        |
| < 25     | 64  | .90             | .76    | .84             | .39    | .74             | .88    |
| 25–39    | 148 | .88             | .76    | .90             | .60    | .88             | .92    |

| 25–39    | 148 | .88             | .76    | .90             | .60    | .88             | .92    |
| 40–54    | 191 | .79             | .76    | .93             | .74    | .84             | .83    |
| 55–69    | 167 | .86             | .78    | .84             | .77    | .78             | .89    |
| 70–85    | 152 | .79             | .81    | .88             | .81    | .74             | .96    |
| > 85     | 218 | .78             | .83    | .78             | .78    | .78             | .91    |

| > 85     | 218 | .78             | .83    | .78             | .78    | .78             | .91    |
Note. Se, sensitivity; Sp, specificity. a“Lifetime” diagnosis (current infantile autism or “residual” infantile autism).
bOriginal ICD-10 criteria and scoring table adapted from Volkmar et al. (1994). Copyright 1994 by the American Psychiatric Association. Adapted by permission.

CLINICAL PHENOMENOLOGY Onset of the Condition As noted, Kanner (1943/1968) emphasized the apparently congenital nature of autism in his original report. Direct evidence regarding the actual onset of the symptoms is still lacking, and a vast majority of the current reports rely on parental recollection regarding the age of onset and type of first abnormalities. Although these reports have their obvious limitations and the onset of parental concerns is likely to follow the actual time when the

obvious limitations and the onset of parental concerns is likely to follow the actual time when the symptoms of autism spectrum disorder (ASD) (equivalent to the term PDD) begin to manifest, they also offer some insight into the nature of the first concerns that are likely to motivate parents to seek professional advice, which in turn may lead to an earlier initiation of treatment. Raising parental awareness of the first signs of various developmental disorders, including ASD, has become one of

awareness of the first signs of various developmental disorders, including ASD, has become one of the priorities of a number of parent organizations, such as Autism Speaks (www.autismspeaks.org) and the Centers for Disease Control and Prevention (www.cdc.gov/ncbddd/autism/actearly/), as one of the factors that are likely to contribute to early identification and treatment of infants with developmental disabilities. A number of studies have suggested that the vast majority of parents of children

disabilities. A number of studies have suggested that the vast majority of parents of children with ASD first notice abnormalities during the course of the first 2 years of life (Baghdadli, Picot, Pascal, Pry, & Aussilloux, 2003; Chawarska, Paul, et al., 2007; De Giacomo & Fombonne, 1998; Rogers & DiLalla, 1990; Tolbert, Brown, Fowler, & Parsons, 2001; Volkmar, Stier, & Cohen, 1985). The first concerns arise, on average, in the second year, usually at about 14 months (Chawarska, Paul, et al.,

arise, on average, in the second year, usually at about 14 months (Chawarska, Paul, et al., 2007), 17 months (Baghdadli et al., 2003), or 19 months (De Giacomo & Fombonne, 1998). These ages are likely to be sensitive to several factors, such as the time elapsing between the onset of parental concerns and the time when the information was collected. With a shorter lag, reports of earlier ages of onset are to be expected; otherwise a “forward-telescoping” effect seems to apply (Cooper, Kim,

of onset are to be expected; otherwise a “forward-telescoping” effect seems to apply (Cooper, Kim, Taylor, & Lord, 2001), that is, a shift of the estimate regarding the age when the child began manifesting first symptoms to later ages. The time when parents begin to notice the first abnormities varies, such that 30–50% of parents report concerns in the first year of the child’s life and 80–90% by the second birthday (Baghdadli et al., 2003; Chawarska, Paul, et al., 2007; De Giacomo & Fombonne,

the second birthday (Baghdadli et al., 2003; Chawarska, Paul, et al., 2007; De Giacomo & Fombonne, 1998; Volkmar et al., 1985). There are relatively few studies reporting on the association between clinical outcome and the onset of parental concerns. Most of the studies were conducted retrospectively and produced very mixed results. A recent study examined prospectively the link between the onset of parental concerns, measured when the toddlers were between 18 and 36 months, and clinical

onset of parental concerns, measured when the toddlers were between 18 and 36 months, and clinical diagnosis at the age of 4 (Chawarska, Paul, et al., 2007). Children who were identified by their parents as having problems between birth and 10 months were four times more likely to be later diagnosed with autism than with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). However, those identified by parents as having difficulties between 11 and 18 months were equally likely to

those identified by parents as having difficulties between 11 and 18 months were equally likely to receive a diagnosis of autism or PDD-NOS at 4 years. Finally, all children in the group with concerns arising at or after 18 months received a diagnosis of autism at the age of 4. This finding suggests a strong and nonlinear relationship between the age of parental recognition (and presumably the onset of symptoms) and clinical diagnosis assigned 2–3 years later and raises a question of possible

of symptoms) and clinical diagnosis assigned 2–3 years later and raises a question of possible variants that manifest differently in the onset of symptoms.

Among the most common and often first noted concerns are delays in speech and language development, followed by an abnormal social responsivity level, medical problems, and nonspecific difficulties related to sleeping, eating, and attention (Chawarska, Paul, et al., 2007; De Giacomo & Fombonne 1998). Notably, in young children, the appearance of stereotyped behaviors, motor mannerisms, and unusual interests rarely trigger parental concerns, most likely because of their relatively mild

unusual interests rarely trigger parental concerns, most likely because of their relatively mild manifestations in infancy or a later onset. Although concerns regarding the development of speech and the level of social engagement are frequent for toddlers with autism and PDD-NOS, the nonspecific concerns related to feeding, eating, and sleep appear to be more frequent for toddlers with PDD-NOS (Chawarska, Paul, et al., 2007). Although the presence of specific delays constitutes a strong basis

Paul, et al., 2007). Although the presence of specific delays constitutes a strong basis for parental concerns, such concerns may also emerge in response to unusual variations in the rate of progress, such as an apparent slowing of development (e.g., if babbling is not followed by the emergence of the first words) or a loss of previously acquired skills (regression) (Siperstein & Volkmar, 2004). Regression is usually reported in 20–35% of cases (Chawarska, Paul, et al., 2007; Goldberg et al.,

Regression is usually reported in 20–35% of cases (Chawarska, Paul, et al., 2007; Goldberg et al., 2003; Luyster et al., 2005; Rapin & Katzman, 1998; Rogers, 2004; Werner & Dawson, 2005) and can involve the loss of words, vocalizations, nonverbal communication skills (e.g., eye contact, gestures), social dyadic interaction skills, imitation, or pretend play (Davidovitch, Glick, Holtzman, Tirosh, & Safir, 2000; Goldberg et al., 2003; Luyster et al., 2005). The perception of regression appears to

Safir, 2000; Goldberg et al., 2003; Luyster et al., 2005). The perception of regression appears to be specific, though clearly not universal, to ASD (Luyster et al., 2005; Siperstein & Volkmar, 2004). Parental reports of regression do not necessarily indicate normal development prior to the perceived loss of skills, nor do early abnormalities preclude regression (Lord, Shulman, & DiLavore, 2004; Siperstein & Volkmar, 2004; Werner & Dawson, 2005; Wilson, Djukie, Shinnar, Dharmani, & Rapin,

Siperstein & Volkmar, 2004; Werner & Dawson, 2005; Wilson, Djukie, Shinnar, Dharmani, & Rapin, 2003). In fact, unequivocal loss of skills following normal developmental milestones is relatively uncommon (Siperstein & Volkmar, 2004; see Figure 1.1). An analysis of developmental history in a large sample of children with autism suggested that in most instances of reported loss, the development seemed to reach a plateau and then stagnate rather than undergo a true loss of skills. In other

seemed to reach a plateau and then stagnate rather than undergo a true loss of skills. In other instances, parents reported a loss in a child who was already experiencing developmental delays (Siperstein & Volkmar, 2004). However, it is clear that in some cases a marked regression does occur—such regression has been documented in very young children with ASD through analysis of video recordings in the first year of life (Werner & Dawson, 2005). Werner and Dawson (2005) used home videotapes of

in the first year of life (Werner & Dawson, 2005). Werner and Dawson (2005) used home videotapes of the first and second birthday parties of children with ASD and of typically developing controls. Raters blind to diagnosis and history of regression confirmed regression, as defined by a decline in frequency of joint attention acts and word/babble use in a subset of the ASD sample.

FIGURE 1.1. Loss of developmental skills.  It is clear that skill loss after a prolonged period of normal development (e.g., to 3 or 4 years) is relatively uncommon. A specific diagnostic term, Childhood Disintegrative Disorder, exists for this category of cases, and the outcome appears to be worse than that in autism, with little or no recovery of previously exhibited abilities (Volkmar, Koenig, & State, 2005). Given the complexities of understanding the role of regression in autism, it

& State, 2005). Given the complexities of understanding the role of regression in autism, it remains unclear as to what relationship exists between this less common later-onset condition and reported early regression in autism. Among the factors that precipitate the onset of parental concerns are concurrent cognitive delays, delays in motor development, and the presence of medical problems (De Giacomo & Fombonne, 1998). The presence of perinatal complications and sensory deficits has also been

& Fombonne, 1998). The presence of perinatal complications and sensory deficits has also been associated with earlier recognition (Baghdadli et al., 2003). A more recent study suggests that in the first year, late onset of social smile, delays in responsivity to speech and language understanding, and late onset of independent walking are possible factors precipitating parental concerns (Chawarska, Paul, et al., 2007). Factors that have not been found to influence the age of recognition include

Paul, et al., 2007). Factors that have not been found to influence the age of recognition include birth order, social class, and gender (De Giacomo & Fombonne, 1998). More recently, the growing appreciation of the genetic factors in autism and increased risk for ASD in younger siblings of the affected children may sensitize parents to early signs of vulnerability and contribute to earlier recognition of developmental problems (Klin et al., 2004; Zwaigenbaum et al., 2007).

Clinical Presentation in the First Year of Life Kanner’s original report emphasized the central role of social difficulties in autism. It is a tribute to his powers of observation that most subsequent research has supported this observation, albeit with considerable refinement (Carter, Davis, Klin, & Volkmar, 2005; see also Chawarska & Volkmar, 2005, for a review). Although early reports on symptoms of autism in the first year of life relied heavily on parental report (e.g., Dahlgren &

on symptoms of autism in the first year of life relied heavily on parental report (e.g., Dahlgren & Gillberg, 1989; Klin, Volkmar, & Sparrow, 1992) and single case studies (Dawson, Osterling, Meltzoff, & Kuhl, 2000), these reports were later supplemented by analytic studies of home video recordings depicting, for instance, a first birthday party or other family events (e.g., Baranek, 1999; Maestro et al., 2001; Osterling, Dawson, & Munson, 2002; Werner et al., 2000). Studies based on these

et al., 2001; Osterling, Dawson, & Munson, 2002; Werner et al., 2000). Studies based on these approaches have contributed greatly to raising awareness, regardless of possible early symptoms of ASD. However, they suffer a number of important methodological limitations related, for instance, to parental ability to detect and report on the more subtle and contextualized symptoms of ASD (Chawarska, Klin, Paul, & Volkmar, 2007; Stone, Hoffman, Lewis, & Ousley, 1994) as well as to the sensitivity and

Paul, & Volkmar, 2007; Stone, Hoffman, Lewis, & Ousley, 1994) as well as to the sensitivity and specificity of the identified deficits to ASD owing to issues with control groups or the representativeness of the source material (i.e., videotapes) (see also Zwaigenbaum et al., 2007, for a review).

More recently, however, the findings of increased genetic liability for ASD in younger children enabled researchers to study ASD in statu nascendi by following prospectively large cohorts of younger siblings at risk for developing the disorders (Zwiegenbaum et al., 2007). The sibling recurrence rate of autism has been estimated between 3 and 8% (Bailey et al., 1995; Bailey, Phillips, & Rutter, 1996; Ritvo et al., 1989). These numbers may underestimate the true recurrence rate for several

1996; Ritvo et al., 1989). These numbers may underestimate the true recurrence rate for several reasons, including (1) increased prevalence rates related to the employment of more inclusive diagnostic criteria for autism and PDD-NOS since the advent of DSM-IV, and (2) the stoppage phenomenon exemplified by a high number of families avoiding further pregnancies once an offspring is diagnosed with autism (Jones & Szatmari, 1988; Slager, Faroud, Haghighi, Spence, & Hodge, 2001). Increased rates

autism (Jones & Szatmari, 1988; Slager, Faroud, Haghighi, Spence, & Hodge, 2001). Increased rates for nonautistic PDD in siblings (Asperger syndrome, PDD-NOS) have also been reported (Bailey et al., 1995; Le Couteur et al., 1996). Features of a broader autism phenotype (BAP) have been reported in 15–45% of family members (Bailey, Palferman, Heavey, & Le Couteur, 1998; Folstein et al., 1999), with higher rates of both narrow and broad autistic phenotype in male rather than female relatives of

higher rates of both narrow and broad autistic phenotype in male rather than female relatives of individuals with autism (Bolton et al., 1994; Pickles et al., 1995; Piven, Palmer, Jacobi, Childress, & Arndt, 1997). Preliminary findings from ongoing studies on high-risk siblings suggest that 20–25% of younger siblings of children with autism may exhibit developmental impairments in the first or second year of life (Zwaigenbaum et al., 2005), though studies examining the developmental

first or second year of life (Zwaigenbaum et al., 2005), though studies examining the developmental trajectories of younger siblings are clearly needed and are slowly emerging (Landa & Garrett-Mayer, 2006; Yirmiya et al., 2006).

Analysis of videotapes suggests that as compared with typical controls, infants who were later diagnosed with ASD were less likely to look at and seek other people, and they were less likely to smile and vocalize at others in the first 6 months of life (Maestro et al., 2002). In the second half of the first year, infants later diagnosed with ASD might show difficulties in responding when their names were called and look at others less frequently, as compared with typically developing children

were called and look at others less frequently, as compared with typically developing children or infants with developmental delays (Baranek, 1999; Osterling et al., 2002; Werner et al., 2000). However, as a recent prospective study of high-risk infants suggests, limited response to their names at 12 months, although quite specific to infants with ASD as well as high-risk siblings with developmental delays, is by no means universally present in all infants who are later diagnosed with the

delays, is by no means universally present in all infants who are later diagnosed with the disorder (Nadig et al., 2007). Thus, failure to respond to his or her name may be an indicator that a 12-month-old child would benefit from further evaluation, but passing the “name-calling” test does not mean that the child is not at risk of developing ASD. Studies of the presence of unusual sensory behaviors and motor stereotypies in samples of children with ASD, as compared with children with

behaviors and motor stereotypies in samples of children with ASD, as compared with children with developmental delays, yield mixed results. Although some suggest the presence of excessive mouthing and possibly aversion to social touch (Baranek, 1999; Loh et al., 2007; Osterling et al., 2002), others fail to detect similar effects. Furthermore, motor stereotypies have been reported in some samples (Loh et al., 2007; Osterling et al., 2002) but not in others (Baranek, 1999; Werner & Dawson,

(Loh et al., 2007; Osterling et al., 2002) but not in others (Baranek, 1999; Werner & Dawson, 2005).

Presently the vast majority of prospective baby sibling studies report on the expression of the broader autism phenotype that can be detected in infant siblings who are not affected with a full-blown ASD, rather than on children who were actually diagnosed with ASD later on (e.g., Toth, Dawson, Meltzoff, Greenson, & Fein, 2007; Cassel et al., 2007; Merin, Young, Ozonoff, & Rogers, 2007; Gamliel, Yirmiya, & Sigman, 2007). This current trend is related to the fact that owing to a relatively low

Yirmiya, & Sigman, 2007). This current trend is related to the fact that owing to a relatively low recurrence rate among siblings, very large longitudinal samples need to accumulate for certain research questions to be addressed. Nonetheless, the first experimental studies reporting on the presentation of infants with ASD in the first year of life are beginning to emerge. Prospective studies of infant siblings, followed from 6 to 24 or 36 months and identified as having some form of ASD,

of infant siblings, followed from 6 to 24 or 36 months and identified as having some form of ASD, suggest that robust behavioral features of ASD that could be captured through standard assessment instruments such the Autism Observation Scale for Infants (AOSI; Bryson, Zwaigenbaum, McDermott, Rombough, & Brian, 2007) and the Mullen Scales of Early Learning (MSEL; Mullen, 1995) may not emerge until some time after 6 months and before 12 months, with further intensification of their expression

some time after 6 months and before 12 months, with further intensification of their expression occurring between 12 and 24 months (Bryson, Zwaigenbaum, Brian, et al., 2007; Landa & Garrett-Mayer, 2006; Zwaigenbaum et al., 2005). Zwaigenbaum and colleagues (2005) identified several features at 12 months that are likely to differentiate siblings with ASD from those without social disability. Among the features were poor eye contact, limited social interest and smiling, limited use of gestures,

the features were poor eye contact, limited social interest and smiling, limited use of gestures, poor response to name, poor imitation, and delays in receptive and expressive language. These infants also exhibited temperamental abnormalities, including initial passivity in early development followed by the emergence of a tendency for extreme distress reactions by 12 months. Difficulties in disengagement of visual attention were also noted. Studies such as these constitute the first step toward

of visual attention were also noted. Studies such as these constitute the first step toward establishing clear diagnostic criteria for ASD in the first year of life, although extensive studies are needed to establish both sensitivity to and specificity of the identified abnormalities. A complementary approach to identifying behavioral markers of ASD in infancy involves the employment of experimental designs targeting basic perceptual and cognitive processes involved in development of social

designs targeting basic perceptual and cognitive processes involved in development of social interactions and communication. Among these are eye-tracking studies of perception of social and nonsocial stimuli (e.g., Chawarska & Shic, 2007; Klin & Jones, in press; Merin et al., 2007) and speech perception (Nadig et al., 2007). These studies are discussed in greater detail by Klin, Saulnier, Chawarska, and Volkmar (Chapter 6, this volume).

Symptoms of ASD in the Second and Third Years of Life Several factors have contributed to a much larger body of data on autism as it manifests after the first birthday and before age 3. Recent advances in clinical research suggest that in 2- and 3-year-olds, symptoms of autism center on areas of social interaction and communication and are often accompanied by delays in multiple areas of functioning, including motor and nonverbal cognitive development (see Chawarska & Volkmar, 2005, for a

including motor and nonverbal cognitive development (see Chawarska & Volkmar, 2005, for a review; see also Bishop, Luyster, Richler, & Lord, Chapter 2; Chawarska & Bearss, Chapter 3; and Paul, Chapter 4, this volume). In the social domain, the most frequently reported symptoms are diminished eye contact, limited interest in social games and turn-taking exchanges, low frequency of looking referentially at parents, and preference for being alone (Cox et al., 1999; Lord, 1995; Stone, Lee, et al.,

at parents, and preference for being alone (Cox et al., 1999; Lord, 1995; Stone, Lee, et al., 1999). Vocal and motor imitation and symbolic play skills appear delayed as compared with the children’s overall developmental levels (Baron-Cohen, Cox, Baird, Sweettenham, & Nightingale, 1996; Cox et al., 1999). Young children with autism direct their visual attention more frequently toward objects than toward people (Dawson et al., 2004; Swettenham et al., 1998). A limited range of facial expressions

toward people (Dawson et al., 2004; Swettenham et al., 1998). A limited range of facial expressions and infrequent instances of sharing affect (e.g., by smiling and looking at others) have been reported as well (Cox et al., 1999; Lord, 1995; Stone, Lee, et al., 1999). In the area of communication, the most striking differences relate to early emerging social communicative exchanges through nonverbal (e.g., use of gestures or gaze to communicate interest or joint attention) and vocal or verbal

(e.g., use of gestures or gaze to communicate interest or joint attention) and vocal or verbal means. The child’s responsivity to speech in general, and to his or her name in particular, continues to be limited (Baron-Cohen et al., 1996; Cox et al., 1999; DiLavore, Lord, & Rutter, 1995; Klin, 1991; Lord & Pickles, 1996; Paul, Chawarska, Klin, & Volkmar, 2007). Vocalizations may take on an abnormal quality (Sheinkopf, Mundy, Oller, & Steffens, 2000; Wetherby, Yonclas, & Bryan, 1989). Stereotypic

quality (Sheinkopf, Mundy, Oller, & Steffens, 2000; Wetherby, Yonclas, & Bryan, 1989). Stereotypic and repetitive behaviors reach a clinical threshold in the second year in some children (Chawarska, Klin, et al., 2007), and in a vast majority of children by the age of 4 (e.g., Lord, 1995). Adaptive skills are usually delayed beyond what would be expected based on the developmental level (Klin et al., 1992; Stone, Ousley, Hepburn, Hogan, & Brown, 1999). The relatively mild expression of the

et al., 1992; Stone, Ousley, Hepburn, Hogan, & Brown, 1999). The relatively mild expression of the unusual repetitive behaviors (stereotyped movements and mannerisms) and the general category of “resistance to change” behaviors in this age group is of some interest (e.g., Chawarska, Klin, et al., 2007; Loh et al., 2007; Lord, 1995). The absence of clear-cut behaviors in this general category is one of the more general conceptual problems in the application of categorical (DSM-IV or ICD-10)

is one of the more general conceptual problems in the application of categorical (DSM-IV or ICD-10) diagnostic criteria. In Lord’s longitudinal study the absence of such behaviors before age 3 was a frequent reason that a diagnosis of autism could not be made (Lord, 1995; Lord et al., 2006). Although clear precursors of such behaviors may potentially be used as alternatives for this age group, relatively few attempts have been made to identify such precursors (Loh et al., 2007) and to assess

relatively few attempts have been made to identify such precursors (Loh et al., 2007) and to assess their specificity to ASD. However, difficulties in adapting to new situations, interest in visually repetitive phenomena (e.g., ceiling fans), and overattention to the nonsocial environment (focusing on alphabet letters on blocks or small details of play materials) are potential candidates. Furthermore, an increase in the second year, rather than the expected decrease, of some of the repetitive

an increase in the second year, rather than the expected decrease, of some of the repetitive movements observed in the first year (Thelen, 1979) may be a sign of abnormal development in this area (Loh et al., 2007).

IMPLICATIONS FOR DIAGNOSIS AND SCREENING Issues of diagnosis and screening are discussed in detail by Bishop et al. (Chapter 2, this volume) and are only briefly touched upon here. Clearly, by about age 3 (and often even before) the current DSM-IV/ICD-10 categorical approach can be used with little difficulty. Available work does highlight some limitations of their criteria for very young children (Stone, Lee, et al., 1999). An alternative categorical classification (National Center for

children (Stone, Lee, et al., 1999). An alternative categorical classification (National Center for Clinical Infant Programs [NCCIP], 1994) has been proposed, but its utilization in the clinical community has been limited, probably because its underlying conceptualization has been developed outside the body of nosological research in autism. Thus, there is little information on its concurrent validity with DSM-IV and related literature. Because the history of this system precedes the current

with DSM-IV and related literature. Because the history of this system precedes the current wave of nosological efforts related to children under the age of 3 years, it would be critical for the NCCIP (now Zero to Three) system to be properly researched and its clinical and concurrent validity (relative to other systems), reliability, and other psychometric properties to be adequately assessed. More generally, well-documented diagnostic instruments may work well after age 3–4 years or past a

More generally, well-documented diagnostic instruments may work well after age 3–4 years or past a certain developmental level (often around 18 months), but their use is not clearly established for the first years of life. Dimensional assessment instruments have a number of potential advantages—for example, in their approach to developmental change and/or developmental level—and may be of particular use, given the greater potential for change in this age group. Similarly, screening approaches

use, given the greater potential for change in this age group. Similarly, screening approaches (see Bishop et al., Chapter 2, this volume) are particularly important in terms of identification of children in need of services but present their own issues in terms of design and evaluation. Unfortunately, what is critically needed, but not yet available, are methods that rely on biological markers or some other robust, readily measured indicator of risk. Given the lack of such markers,

markers or some other robust, readily measured indicator of risk. Given the lack of such markers, clinician-assigned diagnosis, as provided by experienced clinicians, remains the “gold standard” for diagnosis in infancy (Chawarska, Klin, et al., 2007; Cox et al., 1999; Gillberg et al., 1990; Lord, 1995; Stone, Lee, et al., 1999).

SUMMARY AND CONCLUSIONS: THE SIGNIFICANCE OF EARLY CASE DETECTION The growing body of work on autism in infants is important for several reasons. Available data suggest that with earlier case detection the outcome of autism is gradually improving; for example, more and more individuals are able to live independently and fewer are likely to remain mute and to exhibit comorbid intellectual disability (Howlin, 2005). The recent National Research Council (2001) review of evidence on early

disability (Howlin, 2005). The recent National Research Council (2001) review of evidence on early treatment notes that, despite various limitations, a considerable body of work on the importance of early intervention now exists. In addition to its being important for treatment and long-term outcome, early detection is also important in clarifying the earliest developmental processes, which may be disrupted in autism. Prospective research is critically needed to help us to more fully understand

disrupted in autism. Prospective research is critically needed to help us to more fully understand the basic mechanisms of psychopathology and to clarify how early difficulties become entrained in subsequent development. Somewhat paradoxically, those who work with both higher-functioning older individuals with autism and very young infants are impressed not only by the potential for significant developmental change, but by the severity and continuity of difficulties across time and

developmental change, but by the severity and continuity of difficulties across time and development—for example, in modulation of the human voice in prosody and in the use of eye contact to mediate social interaction (Paul, Augustyn, Klin, & Volkmar, 2005). The ability to observe these early processes without the accompanying overlay of subsequent development will be particularly important. Study of the range of early developmental skills in this population may also result in some clinical

of the range of early developmental skills in this population may also result in some clinical surprises; for examples, there is now a suggestion that for a subgroup of infants, difficulties in affect regulation and temperament may be the more striking initial signs of autism rather than disturbances in social interaction (Bryson, Zwaigenbaum, Brian, et al., 2007). Consistent with Kanner’s (1943/1968) original description, it appears that in many cases infants are born with autism. It is also

original description, it appears that in many cases infants are born with autism. It is also clear that in a variably reported, apparently small number of cases, the child develops reasonably normally for a time before autism appears. Although much work remains to be done, it is possible even now to begin to understand how some of the early manifestations of autism become entrained in subsequent development. Data from this age group may shed important light on perplexing clinical questions—for

development. Data from this age group may shed important light on perplexing clinical questions—for instance, the well-established differences in gender ratio and severity may be apparent before age 3 years (Carter et al., 2007). Careful follow-up studies also emphasize the potential difficulties of early diagnosis (Sutera et al., 2007), further underscoring the importance of biological markers and the study of specific biological and neuropsychological processes for better early diagnosis. To

the study of specific biological and neuropsychological processes for better early diagnosis. To this end, the study of very specific social processes under highly controlled conditions may be particularly important (e.g., Chawarska, Klin, & Volkmar, 2003; Chawarska & Volkmar, 2005; Chawarska & Shic, 2007; Klin, 1992; Klin & Jones, in press; Klin, Jones, Schultz, Volkmar, & Cohen, 2002; Merin et al., 2007; Presmanes et al., 2007). As such processes are identified, siblings can also be studied

al., 2007; Presmanes et al., 2007). As such processes are identified, siblings can also be studied to address potential contributions of these processes to the broader autism phenotype (Cassel et al., 2007; Presmanes, Walden, Stone, & Yoder, 2007; Toth et al., 2007; Gamliel et al., 2007).

ACKNOWLEDGMENTS Preparation of this chapter was supported in part by grants from the National Alliance for Autism Research/Autism Speaks and the National Institute of Mental Health (Grant No. U54 MH676494) to Fred R. Volkmar, Katarzyna Chawarska, and Ami Klin.

Diagnostic Assessment SOMER L. BISHOP RHIANNON LUYSTER JENNIFER RICHLER CATHERINE LORD Autism is a neurodevelopmental disorder characterized by deficits in social reciprocity and communication and by the presence of restricted and repetitive behaviors and/or interests. According to the criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV; American Psychiatric Association, 1994) and the International Classification of Diseases (ICD-10; World Health

Association, 1994) and the International Classification of Diseases (ICD-10; World Health Organization, 1992), in order to receive a diagnosis of autism, a child must have shown abnormalities in social interaction, language as used in social communication, or symbolic/imaginative play before the age of 3 years. If a child does not meet all of the above criteria for autism, he or she may be given a diagnosis of Asperger syndrome (AS) or Pervasive Developmental Disorder-Not Otherwise Specified

a diagnosis of Asperger syndrome (AS) or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). We refer to these three diagnoses together as autism spectrum disorders (ASD). Because there is not yet a biological marker for ASD, a diagnosis of ASD is made on the basis of a behavioral profile, which is characterized by both the absence of typical behaviors as well as the presence of atypical behaviors. Recently, researchers and clinicians have sought to identify ASD earlier and

of atypical behaviors. Recently, researchers and clinicians have sought to identify ASD earlier and earlier, owing to findings that early intervention is associated with improved outcomes (Harris & Handleman, 2000). This is somewhat problematic, however, because whereas the behavioral features of ASD are well established for children in the preschool years and beyond, less is known about symptom presentation in the first 2 years of life (Zwaigenbaum et al., 2005; Mitchell et al., 2006). Indeed,

in the first 2 years of life (Zwaigenbaum et al., 2005; Mitchell et al., 2006). Indeed, DSM-IV criteria were established based on the profile exhibited in early and middle childhood and do not necessarily apply to children under the age of 3. Therefore, professionals should exercise caution when making diagnoses in very young children. Furthermore, any assessment for possible ASD needs to be comprehensive and include a consideration of other disorders of early childhood. Because ASD is a

comprehensive and include a consideration of other disorders of early childhood. Because ASD is a developmental disorder and different symptoms are diagnostic at different points in development, understanding what is developmentally appropriate for children under 3 is an important first step in early identification of the disorder. This chapter addresses issues in the assessment and diagnosis of ASD in infants and toddlers. The first section provides a brief summary of the development of

of ASD in infants and toddlers. The first section provides a brief summary of the development of social, communication, and play behaviors in typically developing young children. Next, we provide guidelines for assessment and differential diagnosis of children with ASD, including the importance of considering social, communication, and play behaviors in the context of a child’s overall developmental functioning. Finally, we review the currently available screening instruments for identifying

functioning. Finally, we review the currently available screening instruments for identifying ASD in infants and toddlers, with special attention given to their appropriateness and limitations for use with children under 3 years of age.

EARLY TYPICAL DEVELOPMENT The impairments that result from ASD are defined in relation to typical development. Reciprocal interaction and communication difficulties involve deficits in behaviors that emerge in typically developing children without explicit teaching and that are adaptive in their social contexts. In the area of restricted and repetitive behaviors and interests (RRBs), impairment refers to the presence of unusual, sometimes maladaptive behaviors that are, at least according to

refers to the presence of unusual, sometimes maladaptive behaviors that are, at least according to common wisdom, not usually seen in typically developing children. Thus, in order to determine if a child is showing signs of ASD, it is crucial to have a clear understanding of what constitutes typical behavior in a child of the same developmental level. As more and more children are being referred for a diagnosis of ASD at very young ages, it has become particularly important to have a

referred for a diagnosis of ASD at very young ages, it has become particularly important to have a comprehensive picture of social and communicative behavior in typically developing infants and toddlers. This understanding can help clinicians and researchers avoid overdiagnosing autism as well as wrongly dismissing real, appropriate concerns about behaviors associated with ASD. A large body of evidence suggests that children come into the world already socially oriented and that their social

evidence suggests that children come into the world already socially oriented and that their social understanding becomes richer and more sophisticated in a relatively short period of time. Newborns prefer looking at faces over nonface patterns (Valenza, Simion, Cassia, & Umilta, 1996) and prefer listening to speech over nonspeech sounds (Vouloumanos & Werker, 2004). Meltzoff and Moore (1989) have shown that newborns can imitate simple human gestures, such as tongue protrusions and head

have shown that newborns can imitate simple human gestures, such as tongue protrusions and head movements, and by just 6 weeks of age they can engage in deferred imitation, emulating others’ facial movements after a 24-hour delay (Meltzoff & Moore, 1994). Children as young as 6 months can distinguish between purposeful and nonpurposeful action (Woodward, 1999), and by 9 months of age they are able to follow and direct the attention of adults to outside entities, a capacity known as joint

able to follow and direct the attention of adults to outside entities, a capacity known as joint attention (Tomasello, 1995). At approximately 12 months of age, infants begin to engage in social referencing by using the emotional reactions of others to determine how to behave (Walden & Ogan, 1988). At approximately 18 months, toddlers can infer an adult’s intended action by watching failed attempts (Meltzoff, 1995). By 24 months of age, children adjust the language they use in conversation

(Meltzoff, 1995). By 24 months of age, children adjust the language they use in conversation based on their understanding of what the listener knows (Tomasello, Farrar, & Dines, 1984).

This progression shows an increasing understanding of others’ intentions in the first 2 years of life. Tomasello (1995) has proposed a developmental trajectory for the understanding of others’ intentions, whereby children progress from following and directing the attention of others without understanding their intentions, to understanding others as intentional agents, to learning that others’ intentions may not always match the situation. This work has recently been expanded to suggest that

intentions may not always match the situation. This work has recently been expanded to suggest that these early developments culminate in the understanding of shared intentions with another individual, which is believed to be a defining feature of human social interaction (Tomasello, Carpenter, Call, Behne, & Moll, 2005). Understanding of others’ intentions is also thought to underlie the ability to learn words. According to this view, early language acquisition represents a form of social

to learn words. According to this view, early language acquisition represents a form of social cognition. In order for a child to learn the referent of a novel word, he or she must infer the referential intent of the speaker, using subtle cues such as the direction of the speaker’s gaze and other contextual clues (Baldwin, 1993). One of the most remarkable aspects of early development is its rapid pace. In a relatively short period of time, children’s understanding of the social world becomes

pace. In a relatively short period of time, children’s understanding of the social world becomes quite sophisticated. Yet it is important to remember that there is a great deal of variability in early trajectories of social and communication development. Fenson et al. (1994) emphasize the importance of going beyond descriptions of the “modal child” in order to understand the range of variability that can be expected in typically developing children. For example, there is a great deal of

that can be expected in typically developing children. For example, there is a great deal of variability in both early receptive language and expressive vocabulary development. As children get older, this variability increases, because children whose initial language is more advanced also show a higher rate of word acquisition. When considering variability in early social and communication development, then, it may be useful to examine not only differences in children’s abilities at a given

then, it may be useful to examine not only differences in children’s abilities at a given point in development, but also differences in the developmental trajectories of these abilities over time.

Marked individual differences have been found in other areas of communication, such as use of gestures, as well as in the development of social cognition. In a comprehensive study of children’s social and communication development from 9 to 15 months of age, Carpenter, Nagell, Tomasello, Butterworth, and Moore (1998) found considerable variability in attention and gaze following, imitation, gesture production, and joint engagement, among other skills. Although the majority of the children in

production, and joint engagement, among other skills. Although the majority of the children in their sample displayed these skills by the age of 12 months, some children acquired these skills earlier than others (e.g., as young as 9 months) and some children had not acquired certain skills by 15 months. Some researchers have argued that differences in child temperament might explain some of the variability in early social and communication development. Dixon and Smith (2000) found that

of the variability in early social and communication development. Dixon and Smith (2000) found that temperament exhibited in early development was related to subsequent language skills, both receptive and expressive. In their sample, children who showed greater adaptability, more positive mood, and greater persistence at 13 months tended to have more productive language at 20 months, and children who had long durations of orientation, smiled and laughed frequently, or were easily soothed at 7

who had long durations of orientation, smiled and laughed frequently, or were easily soothed at 7 months tended to have advanced comprehension at 7 and 10 months of age. Other studies have found similar relationships between children’s early temperament and later language (Slomkowski, Nelson, Dunn, & Plomin, 1992). Dixon and Smith (2000) suggest that the relationship between temperament and language may be mediated by amount of joint engagement. That is, parents and others may be less likely to

may be mediated by amount of joint engagement. That is, parents and others may be less likely to enter into a social exchange with a child who shows negative affect and poor adaptability than they would with a child who shows positive affect. The reduced amount of social interaction may in turn adversely affect the child’s understanding and production of language. This model is partly supported by a finding in the study by Carpenter et al. (1998) that the amount of time mother–infant dyads

by a finding in the study by Carpenter et al. (1998) that the amount of time mother–infant dyads spent in joint engagement was related to the child’s early verbal and nonverbal communication skills.

The fact that there is a wide range of social and communication skills among typically developing young children presents a challenge to those trying to identify “markers” of ASD in children of this age. How does one decide if a toddler has a true impairment in reciprocal social interaction and/or communication that puts him at risk for a diagnosis of ASD, or whether he simply falls on the lower end of the continuum of typical development in these areas? Is a toddler who does not smile at

end of the continuum of typical development in these areas? Is a toddler who does not smile at others very often simply showing less positive affect than the “average” typical child of the same age because of her temperament, or does she have a more fundamental difficulty in interacting with others? It is also important to consider the role that cultural differences play in a child’s social and communication behaviors (see Babad et al., 1983). The child’s social environment, including

and communication behaviors (see Babad et al., 1983). The child’s social environment, including culturally based parenting practices, is likely to influence some of the aspects of infant social communication behaviors. Additional insight into this issue may come from considering “constellations” of deficits, rather than individual impairments. ASD is commonly thought of as involving deficits in several different areas (Siegel, Pliner, Eschler, & Elliott, 1988). It may be that, in order to be

several different areas (Siegel, Pliner, Eschler, & Elliott, 1988). It may be that, in order to be considered “at risk” for ASD, a child should be showing deficits in more than one of these areas. Therefore, when considering a particular social or communicative behavior in a young child, it may be important to consider whether the child is “below average” or “impaired” in a specific behavior, but also whether difficulties in that behavior occur in the context of other impairments. For example,

also whether difficulties in that behavior occur in the context of other impairments. For example, a child who shows delays in using sounds and words but who shows positive affect, good eye contact, and use of early gestures would likely not elicit much concern as a child who, in addition to having delayed expressive language, shows impairments in other areas. Practitioners may also want to consider these issues when conducting evaluations of slightly older children. Despite the minimum onset

these issues when conducting evaluations of slightly older children. Despite the minimum onset requirement presented by DSM-IV—delay or abnormality in social interaction, or in language as used in social communication, or in imaginative play prior to age 3—practitioners may want to require that these types of early atypicalities occur in conjunction with one another in order to establish the onset of ASD.

Even with these distinctions in mind, it can be difficult for clinicians and researchers to determine whether a child who shows two or three developmental difficulties falls somewhere on the autism spectrum, is developmentally delayed but not on the spectrum, or is simply behind relative to the “average” typical child, but still within the range of typical development. PDD-NOS is usually diagnosed in young children who show some impairments characteristic of autism, but in such instances the

in young children who show some impairments characteristic of autism, but in such instances the number of impairments is fewer than that required for a diagnosis of autism, the impairments do not occur across all three areas specified (i.e., social, communication, RRBs), or the impairments are not as severe. This could explain why studies have found that early diagnoses of PDD-NOS are not as stable as diagnoses of autism (Chawarska, Klin, Paul, & Volkmar, 2007). A recent study found that the

as diagnoses of autism (Chawarska, Klin, Paul, & Volkmar, 2007). A recent study found that the majority of children diagnosed with PDD-NOS at age 2 remained on the autism spectrum at age 9. Nevertheless, more than 10% of the children with PDD-NOS diagnoses at 2 years moved to a nonspectrum classification by 5 or 9 years (Lord et al., 2006). Given these criteria, it is possible to see how some young children thought to have “mild autism” might, at older ages, more clearly appear to have

some young children thought to have “mild autism” might, at older ages, more clearly appear to have nonspectrum developmental delays or fall at the lower end of the continuum of typical development. RRBs differ from most social and communication deficits required for a diagnosis of ASD, because they involve the presence of “atypical” behaviors rather than the absence of typical ones. Yet it is important to remember that some RRBs are actually seen in young children with typical development.

important to remember that some RRBs are actually seen in young children with typical development. Thelen (1979) reported motor stereotypies, such as kicking, waving, banging, rocking, and bouncing in normal infants in their first year of life, especially between the ages of 24 and 42 weeks. As toddlers and preschoolers, many typical young children display compulsive-like behaviors, such as insistence on sameness in their routines and/or environment, strong likes and dislikes, a rigid idea of

on sameness in their routines and/or environment, strong likes and dislikes, a rigid idea of how things should look, feel, taste, or smell, and a strict adherence to rituals during times of transition, such as at bedtime. Evans et al. (1997) found evidence for two kinds of compulsive-like behaviors in a substantial portion of young children: “just right” behaviors (e.g., lining objects up or insisting that they be arranged in a precise way) and repetitive behaviors/insistence on sameness (e.g.,

that they be arranged in a precise way) and repetitive behaviors/insistence on sameness (e.g., preferring to have the same schedule every day). It has also been argued that some repetition in object use or exploration (i.e., Piagetian secondary circular reactions) is important for developing cognitive skills, such as problem solving.

It is interesting to note the similarities between these behaviors and those considered to be “restricted and repetitive behaviors and interests” (American Psychiatric Association, 1994) in children with ASD. Many of the behaviors that constitute the category of RRBs are similar to those described in studies of typical children. Factor analyses of RRB scales in ASD have also found evidence for the two “subtypes” of RRBs described above (Cuccaro et al., 2003; Bishop, Richler, & Lord, 2006).

the two “subtypes” of RRBs described above (Cuccaro et al., 2003; Bishop, Richler, & Lord, 2006). Given these similarities, it is important to ask what is different about these behaviors in typically developing children as opposed to children on the autism spectrum, and why their presence at a young age is not necessarily an indicator of later impairment. Part of the answer may lie in the developmental trajectories of these behaviors in typically developing children as compared to those of

trajectories of these behaviors in typically developing children as compared to those of children with ASD. In the study by Evans et al. (1997), children between the ages of 24 and 36 months were found to exhibit the highest frequency and intensity of compulsive-like behaviors; after 36 months, scores tended to decrease steadily and then more steeply, so that mean scores between the ages of 48 and 72 months were significantly lower. This pattern suggests that most typically developing children

72 months were significantly lower. This pattern suggests that most typically developing children tend to “grow out of” these behaviors, although this conclusion should be made with caution, given that the data in this study were cross-sectional. In contrast, longitudinal studies of RRBs in children with ASD have found that many of these behaviors tend to increase in prevalence and severity with time, at least up until the age of 5 and possible until older ages (Moore & Goodson, 2003; Charman

time, at least up until the age of 5 and possible until older ages (Moore & Goodson, 2003; Charman et al., 2005). One of the main differences in these behaviors in typically developing children versus those with ASD could be that, for most typical children, the behaviors tend to be common only within a relatively narrow window of development, in contrast to children with ASD, who exhibit these behaviors for longer periods of time (Thelen, 1979).

This again highlights the importance of considering the differences in constellations of behaviors in young children with typical development as opposed to those with ASD. In the study by Evans et al. (1997), mean scores of typical children on the Childhood Routines Inventory (CRI) were very low relative to the maximum achievable score. Most children exhibited one or two of these behaviors, or if they did exhibit a few, the behaviors were relatively mild. In contrast, studies of RRBs in

or if they did exhibit a few, the behaviors were relatively mild. In contrast, studies of RRBs in children with ASD indicate that the majority of children, even those at young ages, tend to exhibit more than two repetitive behaviors, and that these behaviors often interfere with the functioning of the child or the family (Richler, Bishop, Kleinke, & Lord, 2007). These findings suggest that it is important to consider whether a child who shows one particular compulsive-like behavior (e.g.,

is important to consider whether a child who shows one particular compulsive-like behavior (e.g., lining up toy cars) also shows other similar behaviors (e.g., insisting that objects be placed in specific locations). Similarly, it is important to consider whether the presence of such behaviors occurs in concert with impairments in social interaction and communication. Part of the reason that repetitive behaviors tend not to be as severe in typically developing children may be that these

repetitive behaviors tend not to be as severe in typically developing children may be that these children do not have the added component of impairment in social interaction and communication to contend with. As a result, they are likely to spend more of their time interacting and communicating with others than engaging in repetitive activities. Even when they do engage in repetitive activities, they are likely to involve others in these activities, which makes the activities more social and

they are likely to involve others in these activities, which makes the activities more social and flexible. In contrast, children with ASD often prefer to participate in repetitive activities rather than interact with others, which further deprives them of social stimulation (Rogers & Ozonoff, 2005).

Considering the early pictures of typical development and atypical development in social interaction and communication side by side, it is interesting to consider why the trajectories of typical development begin to diverge from those of the development of children with ASD. Some have argued that most children are born “hard-wired” to be oriented to the social world, responding to social input in their environment, and in turn, receiving more input (see Johnson et al., 2005). It has also been

their environment, and in turn, receiving more input (see Johnson et al., 2005). It has also been suggested that the early plasticity of the brain may provide an opportunity for experience to shape synaptic connections, eliminating those that are not needed and strengthening those that are crucial for higher-order functions, such as social cognition (Courchesne, Carper, & Akshoomoff, 2003). In contrast, some children may be born without the same predisposition to prioritize social input over

contrast, some children may be born without the same predisposition to prioritize social input over nonsocial input (Dawson, Meltzoff, Osterling, Rinaldi, & Brown, 1998; Dawson et al., 2004) or may experience changes in trajectories of social and communication development, such as reaching a developmental plateau (Siperstein & Volkmar, 2004) or experiencing an actual worsening or regression in social and communication skills (Ozonoff, Williams, & Landa, 2005). Thus, for a number of reasons,

social and communication skills (Ozonoff, Williams, & Landa, 2005). Thus, for a number of reasons, children with ASD may not receive the same social input from the environment as typically developing children during this critical period of brain development (Mundy & Neal, 2001). Consequently, the parts of the brain normally involved in social cognition may not be selectively shaped for this role (Johnson et al., 2005). As typically developing children become more socially sophisticated in the

(Johnson et al., 2005). As typically developing children become more socially sophisticated in the first few years of life, the impairments of children with ASD may build on each other and become more apparent.

EARLY ASSESSMENT OF ASD Because of the cumulative effects of early appearing deficits, such as those described above, detection of the symptoms of ASD tends to become easier as children get older. However, as we have come to understand more about early development of ASD, it has become increasingly possible to differentiate children with ASD from typically developing young children. Furthermore, whereas professionals have traditionally been hesitant to make diagnoses of ASD in children under

whereas professionals have traditionally been hesitant to make diagnoses of ASD in children under the age of 3, recent literature suggests that when made by experienced clinicians, diagnoses of toddlers are relatively stable over time. Because different methods (i.e., clinical observation and parent report) provide different types of information, diagnoses are most accurate and stable when based on information obtained from multiple sources (e.g., Lord et al., 2006; Chawarska, Klin, et al.,

on information obtained from multiple sources (e.g., Lord et al., 2006; Chawarska, Klin, et al., 2007). Even for experienced clinicians, diagnosis can be difficult when trying to distinguish between ASD and other early childhood disorders. Psychological diagnoses, such as intellectual disability, expressive and receptive language disorders, anxiety disorders, and Attention-Deficit/ Hyperactivity Disorder (ADHD), as well as genetic disorders, such as fragile-X syndrome, share many features with

Disorder (ADHD), as well as genetic disorders, such as fragile-X syndrome, share many features with ASD. Making diagnostic distinctions in very young children is therefore a difficult process.

Diagnosis of ASD is further complicated when a researcher or clinician is trying to determine whether a child meets the criteria for autism versus another spectrum condition (e.g., PDD-NOS, AS). Childhood Disintegrative Disorder (CDD) and Rett syndrome are quite rare and are less likely to be confused with autism, especially if a thorough medical history is obtained. On the other hand, clinicians often find themselves trying to distinguish between autism and AS or PDD-NOS, in part because of

often find themselves trying to distinguish between autism and AS or PDD-NOS, in part because of poor agreement about the diagnostic criteria of these disorders (Ozonoff, South, & Miller, 2000). DSM-IV provides guidelines for making diagnostic distinctions between these disorders, but these guidelines were written on the basis of studies of substantially older children (Volkmar et al., 1994; Chawarska & Volkmar, 2005). Both CDD and Rett syndrome are characterized by a period of apparently

Chawarska & Volkmar, 2005). Both CDD and Rett syndrome are characterized by a period of apparently normal development followed by a substantial regression. The onset of CDD must occur after 2 years of age, and the child must exhibit loss of previously acquired skills in at least two areas, such as language, social skills, adaptive behavior, play, toileting, or motor skills (American Psychiatric Association, 1994). After the regression, children with CDD must also exhibit impairments in at least

1994). After the regression, children with CDD must also exhibit impairments in at least two of the three domains in autism (i.e., social interaction, communication, restricted and repetitive behaviors/interests). The regression in Rett syndrome, which is a genetic disorder that occurs primarily in girls, occurs between the ages of 5 and 48 months and is characterized by decelerated head growth; loss of previously acquired purposeful hand movements, such as holding utensils or picking up

loss of previously acquired purposeful hand movements, such as holding utensils or picking up objects; the development of stereotyped midline hand movements, such as hand wringing; loss of social engagement; appearance of poorly coordinated gait or trunk movements; and severely impaired language development (American Psychiatric Association, 1994).

Although approximately 20% of children with autism experience a regression in language or social behaviors (Lord, Shulman, & DiLavore, 2004; Volkmar, Chawarska, & Klin, 2005), the regressions in CDD and Rett syndrome are qualitatively distinct from the most common forms of regression in autism. First, whereas the regressions in CDD and Rett syndrome follow a period of typical development, some abnormality in children with autism is most often recognized, in hindsight, in the first year of life

in children with autism is most often recognized, in hindsight, in the first year of life (Osterling & Dawson, 1994), prior to the onset of regression. Second, the regression in autism is characterized by a loss of language and/or social behaviors, without a loss of adaptive or motor skills (Volkmar & Rutter, 1995; Luyster et al., 2005), which are both typically seen in Rett syndrome and CDD. Moreover, the regression in children with autism is almost always before the age of 24 months (Lord et

the regression in children with autism is almost always before the age of 24 months (Lord et al., 2004; Luyster et al., 2005; Ozonoff et al., 2005; Chawarska, Paul, et al., 2007). In addition to early regression, there are other behavioral markers that have been established as indicators of ASD in the first few years of life. Retrospective analyses of videotapes of children in their first year of life have indicated that those who later receive a diagnosis of ASD exhibit poor visual orientation

life have indicated that those who later receive a diagnosis of ASD exhibit poor visual orientation and attention, limited response to name, lack of socially directed looking, excessive mouthing of objects, and aversion to social touch, relative to comparison groups of typically developing children and children with non-ASD developmental delays (Baranek, 1999; Osterling, Dawson, & Munson, 2002).

More recently, prospective studies of infant siblings of children with ASD, a population of children at high risk for developing ASD, have suggested a number of early features that are associated with a later diagnosis of ASD. Using the Autism Observation Scale for Infants (AOSI) (see below), Zwaigenbaum et al. (2005) found that at 12 months of age, children who were later diagnosed with ASD showed evidence of language delay, as well as several behavioral abnormalities, such as difficulties

evidence of language delay, as well as several behavioral abnormalities, such as difficulties with eye contact, visual tracking and attention, social smiling, imitation, social interest and affect. These infants also tended to demonstrate decreased positive affect and were more likely to exhibit extreme distress reactions and to fixate on objects. Using a parent-report measure of early communication skills, the MacArthur–Bates Communicative Development Inventory—Infant Form (Fenson et al.,

skills, the MacArthur–Bates Communicative Development Inventory—Infant Form (Fenson et al., 1993), Mitchell et al. (2006) found that infant siblings who later met criteria for ASD reportedly understood fewer phrases and demonstrated significantly fewer gestures at 12 months of age than typically developing controls or siblings who did not receive ASD diagnoses. These delays were still apparent at 18 months of age, as were reported delays in understanding and use of single words.

Studies comparing very young children with ASD to those with other types of developmental delays have made it increasingly possible for clinicians and researchers to differentiate between ASD and other non-spectrum disorders. However, obtaining agreement between diagnoses of autism, AS, and PDD-NOS has been much more difficult, particularly in young children. Several different definitions for these disorders exist, which has complicated communication between professionals in the field (Ozonoff

disorders exist, which has complicated communication between professionals in the field (Ozonoff et al., 2000; Klin, Pauls, Schultz, & Volkmar, 2005). According to DSM-IV, AS is characterized by both qualitative impairments in social interaction and the presence of RRBs that are identical to those seen in autism. However, unlike in autism, there can be no delay in language, cognitive development, or adaptive behavior (except social skills) in a diagnosis of AS (American Psychiatric Association,

or adaptive behavior (except social skills) in a diagnosis of AS (American Psychiatric Association, 1994). A diagnosis of PDD-NOS is intended for children who exhibit significant impairments in reciprocal social interaction, as well as difficulties in either communication or the presence of RRBs (or subthreshold difficulties in both areas), who do not meet criteria for another ASD. Evidence suggests that diagnoses of PDD-NOS in early preschool are less stable than autism diagnoses (e.g., Stone

that diagnoses of PDD-NOS in early preschool are less stable than autism diagnoses (e.g., Stone et al., 1999; Lord et al., 2006). Clinicians are more reliable when making distinctions in 2-year-olds between ASD and nonspectrum diagnoses than between specific diagnoses on the spectrum, and it is not uncommon for children to have a change in diagnosis within the spectrum (e.g., from a diagnosis of PDD-NOS to autism) (Stone et al., 1999; Lord et al., 2006). What may be most important for very

of PDD-NOS to autism) (Stone et al., 1999; Lord et al., 2006). What may be most important for very young children, therefore, is making a distinction between a spectrum and a nonspectrum diagnosis, because differential diagnoses within the spectrum tend to be less stable (Lord et al., 2006). Thus, the intervention that children receive should be based more on their individual profiles of strengths and weaknesses, rather than on their specific diagnostic classifications.

SCREENING FOR ASD General Issues Our increasing knowledge of early development in children later diagnosed with ASD has facilitated the creation of a number of screeners targeted at identifying young children with ASD. A major challenge associated with the development of these instruments is being able to discriminate children with significant developmental delays from children with less pervasive and often temporary developmental delays. In large part, the ability to do this depends on our

and often temporary developmental delays. In large part, the ability to do this depends on our understanding of what verbal and nonverbal skills cluster together in the first few years of typical development, and the degree to which these skills are impaired in children for whom ASD is a concern. Clarifying these early profiles of development and using them to screen for ASD in young children has both theoretical and practical implications. First, identifying children with ASD in the first few

both theoretical and practical implications. First, identifying children with ASD in the first few years of life allows for the collection of data about early profiles and trajectories of development. Such information is valuable for theoretical accounts of ASD as well as for informing efforts to improve the accuracy of the screening instruments themselves. In addition, earlier detection of ASD permits prompt delivery of intervention services, and research has indicated that intervention is

permits prompt delivery of intervention services, and research has indicated that intervention is more effective if provided earlier (Harris & Handleman, 2000).

Different approaches have been taken in designing screeners, some using caregivers as informants and others using professionals. There are also two levels of screeners, one designed for population-based screening (i.e., level 1 screeners), and the other designed for more targeted screening of children suspected of having a developmental disorder (i.e., level 2 screeners). In general, screening is distinct from diagnostic assessment in that the former is a relatively broad-based approach

is distinct from diagnostic assessment in that the former is a relatively broad-based approach intended to identify children with unrecognized or ambiguous symptoms of developmental disabilities, whereas the latter is most appropriate for children for whom there is already some clear evidence of developmental abnormality. Level 1 screeners typically employ caregiver reports as a means of gathering information. The primary advantage of this approach is that parents and caregivers are most

information. The primary advantage of this approach is that parents and caregivers are most familiar with the skills of the child across a variety of situations, and they may be more accurate than professionals in reporting low-frequency behaviors (such as using another person’s hand as a tool). However, caregivers may have less experience with children and a less refined understanding of the questions on the screener, which could potentially result in either over- or underestimating their

questions on the screener, which could potentially result in either over- or underestimating their child’s skills. There is also a risk of biased reporting (if caregivers already have beliefs about the diagnostic status of their child). Finally, creating a scale that caregivers will interpret as intended can be quite difficult. Level 2 screeners that use the reports of professionals (such as health care workers or psychologists) have a different set of advantages and disadvantages.

as health care workers or psychologists) have a different set of advantages and disadvantages. Professionals may be more highly trained in observing and identifying certain diagnostically meaningful behaviors, and completion of the screeners can be standardized across reporters. However, they spend much less time with the child. As a result, they generally do not have the opportunity to evaluate the child across contexts and are much less likely than caregivers to note low-frequency behaviors.

In evaluating the effectiveness of level 1 and level 2 screeners, it is useful to consider the constructs of sensitivity and specificity. Sensitivity refers to a measure’s ability to accurately “rule in” all individuals with the targeted trait, and specificity refers to its ability to accurately “rule out” all individuals without the targeted trait. In the context of screening for ASD, sensitivity may be more important for level 1 screeners, because high sensitivity can maximize the detection

may be more important for level 1 screeners, because high sensitivity can maximize the detection of children who are showing a behavioral profile suggestive of ASD. Regardless of whether ASD is their final diagnosis or not, these children are likely to be “at risk” for one form of disability or another and will benefit from identification and referral. Thus, even though decreasing specificity and increasing sensitivity results in more false positives, which can be expensive and potentially

and increasing sensitivity results in more false positives, which can be expensive and potentially problematic, it is better to identify these children with developmental complications early on, rather than later or not at all. In contrast, for level 2 screeners and diagnostic measures, specificity is a higher priority, because it is at this point that the measures must be able to discriminate ASD from phenotypically similar conditions, such as language delay or intellectual disability.

Screening Instruments Current measures for screening and diagnosis are considered here in turn, with reference to current research on their advantages and limitations for children under age 3. Population (level 1) and focused (level 2) screening are addressed (see Figure 2.1). The CHecklist for Autism in Toddlers (CHAT; a level 1 screener) was initially introduced in the United Kingdom as a population screening measure for ASD (Baron-Cohen, Allen, & Gillberg, 1992). The CHAT emphasized joint

screening measure for ASD (Baron-Cohen, Allen, & Gillberg, 1992). The CHAT emphasized joint attention and imagination and was administered to children by health nurses, who routinely visit 18-month-olds in their homes in the United Kingdom. During the visit, the parents were also asked a series of questions about their child’s development. Results indicated that most children classified by the CHAT as having autism were, in fact, later diagnosed with the disorder. However, it later became clear

as having autism were, in fact, later diagnosed with the disorder. However, it later became clear that two-thirds of the children who eventually received an ASD diagnosis were missed by the CHAT (Baird et al., 2000). Moreover, because children with suspected developmental disabilities were eliminated even before the screening, the CHAT’s effectiveness in distinguishing between ASD and other developmental disabilities was unclear. The Modified CHecklist for Autism in Toddlers (M-CHAT), a

developmental disabilities was unclear. The Modified CHecklist for Autism in Toddlers (M-CHAT), a modified version of the CHAT (Robins, Fein, Barton, & Green, 2001), was created to address some of these concerns. The M-CHAT was administered to parents of 24-month-old children who were recruited from pediatric practices and special education programs in the United States. In contrast to the CHAT, the M-CHAT is not administered to the child and instead relies on parent report. Like its

the CHAT, the M-CHAT is not administered to the child and instead relies on parent report. Like its predecessor, the M-CHAT successfully identified children with autism at age 2. The M-CHAT was tested on two groups of children, a population sample and a sample from special education programs. More than 90% of the children identified as having autism were already in special education programs (Robins et al., 2001), so the effectiveness of the M-CHAT for use in the general population is not yet

et al., 2001), so the effectiveness of the M-CHAT for use in the general population is not yet clear. Initial reports of sensitivity and specificity were very high (.87 and .99, respectively), but the authors caution that absolute psychometrics for this measure cannot be determined until all follow-up evaluations are completed (Robins et al., 2001; Robins & Dumont-Mathieu, 2006). A larger study of the M-CHAT in a more representative sample is now under way, and the results of this study will be

the M-CHAT in a more representative sample is now under way, and the results of this study will be important in evaluating the effectiveness of the M-CHAT.

FIGURE 2.1. Levels of screening and diagnosis for children with ASD at age 3 or younger.

The Early Screening for Autistic Traits (ESAT; Swinkels et al., 2006) is a level 1 screener questionnaire with a greater emphasis on play and less on joint attention than the previous instruments. Children who earned high scores on the instrument were likely to have developmental problems. However, for children younger than 24 months of age, the ESAT did not successfully distinguish children with ASD from those with non-ASD conditions. In addition, like the CHAT and M-CHAT, it also failed to

ASD from those with non-ASD conditions. In addition, like the CHAT and M-CHAT, it also failed to identify many children who were later diagnosed with ASD (see, e.g., Buitelaar et al., 2000). Despite the measure’s problems with poor sensitivity, the use of the ESAT heightened public awareness and provided easy access to referrals. As a result of these related benefits, early identification increased. The Communication and Symbolic Behavior Scales—Developmental Profile (CSBS-DP; Wetherby &

The Communication and Symbolic Behavior Scales—Developmental Profile (CSBS-DP; Wetherby & Prizant, 2002) is a brief caregiver questionnaire intended to identify children with communication disorders (not specifically ASD) between the ages of 6 and 24 months. If a child screens positively on the questionnaire based on his or her caregiver’s responses, then a direct assessment (the Behavior Sample) and an additional caregiver questionnaire are administered. Although the initial questionnaire is a

and an additional caregiver questionnaire are administered. Although the initial questionnaire is a level 1 screener, a level 2 screener—the Scale of Red Flags (SORF; Wetherby & Woods, 2002) for autism—was developed for use in scoring videotapes of the Behavior Sample. With the SORF, researchers were able to successfully identify most children with language delay as having or not having autism. However, because most of the children observed had screened positively on the CSBS caregiver

However, because most of the children observed had screened positively on the CSBS caregiver questionnaire, there was no way to identify missed cases and determine the measure’s sensitivity.

The Pervasive Developmental Disorders Screening Test (PDDST; Siegel, 1996) also offers a level 1 and a level 2 screener and is intended for children over the age of 18 months and under the age of 6 years. It is a parent report questionnaire and is designed to screen specifically for ASD. It targets areas of first concern frequently reported by parents of children with ASD, such as nonverbal communication, temperament, play, language, and social engagement. Stage 1 of the PDDST (intended for

temperament, play, language, and social engagement. Stage 1 of the PDDST (intended for use in primary care settings) was reported to have a sensitivity of .85 and a specificity of .71 in a clinic-based sample. In a sample of children with ASD and children with other developmental disorders, sensitivity and specificity of the PDDST-Stage 2 (intended for use in developmental disorders clinics) varied according to the cutoff used, ranging from .69 to .88 and .25 to .63, respectively (Siegel, 1996;

according to the cutoff used, ranging from .69 to .88 and .25 to .63, respectively (Siegel, 1996; Siegel & Hayer, 1999). Research on the PDDST is ongoing to provide further details about its psychometric properties and usefulness in different populations. The Screening Test for Autism in Two-Year-Olds (STAT; Stone, Coonrod, & Ousley, 2000) involves a direct assessment and, as a level 2 screener, is intended for children already suspected of having ASD. However, unlike the diagnostic tests

is intended for children already suspected of having ASD. However, unlike the diagnostic tests described below, it is relatively brief. In addition, it is more straightforward to administer and score; consequently, it does not require extensive training on the part of the examiner. In a validation sample of 12 children with autism and 21 children with non-spectrum developmental disorders, the STAT correctly identified 10 (83%) of the children with autism and 18 (86%) of the children with other

correctly identified 10 (83%) of the children with autism and 18 (86%) of the children with other developmental disorders (Stone et al., 2000). The Social Communication Questionnaire (SCQ; Rutter, Bailey, Lord, & Berument, 2003) is a level 2 caregiver questionnaire designed to identify participants with ASD for research purposes. Although the measure was normed on older children and adults, research has indicated that if the cutoff is modified so that fewer endorsed items are required, the SCQ

has indicated that if the cutoff is modified so that fewer endorsed items are required, the SCQ works well for children as young as 3 years old (Corsello et al., 2007). However, because the children had already been referred for services, it is unclear how appropriate the SCQ is for use in the general population.

There are two other well-known scales primarily intended for level 2 screening but which may be mistaken for diagnostic instruments: the Childhood Autism Rating Scale (CARS) and the Gilliam Autism Rating Scale (GARS). The CARS (Schopler, Reichler, & Renner, 1988) is most useful with children beyond the 2-year-old level and up to 4 or 5 years in developmental skills, and it has been shown to have high sensitivity in older children and adults (Sevin, Matson, Coe, Fee, & Sevin, 1991; Eaves &

have high sensitivity in older children and adults (Sevin, Matson, Coe, Fee, & Sevin, 1991; Eaves & Milner, 1993). Studies have yielded mixed results with regard to the utility of the CARS for use with very young children. Lord (1995) reported that the CARS overidentified autism in 2-year-olds with cognitive impairments, whereas Stone and colleagues (1999) reported good agreement with clinical diagnosis at age 2 (82% agreement). Agreement of the CARS and clinical impression is better by age 3

at age 2 (82% agreement). Agreement of the CARS and clinical impression is better by age 3 (Lord, 1995; Stone et al., 1999), and specificity can be improved by raising the CARS cutoff by 2 points (Lord, 1995). The GARS (Gilliam, 1995) is a behavioral checklist that was developed to screen for autism. However, the measure was not designed for or normed on children under 3 years of age, and thus its usefulness for a young population is unknown. One study (South et al., 2002) employed the GARS in

usefulness for a young population is unknown. One study (South et al., 2002) employed the GARS in a sample of 119 preschool and school-age children with autism. Overall, the GARS underdiagnosed autism, failing to accurately classify more than half of the sample. Until revisions are made, the appropriateness of the GARS for children under 3 is limited.

EARLY DIAGNOSIS OF ASD Once a child has been identified as being at risk for ASD, he or she should be referred to a psychologist, psychiatrist, or developmental pediatrician who specializes in early diagnosis of developmental disabilities. To aid clinicians in making accurate diagnoses, it is essential that a diagnostic assessment be multidimensional and multidisciplinary (see Figure 2.2). This includes gathering information from different sources and assessing a child’s behavior across a

includes gathering information from different sources and assessing a child’s behavior across a variety of contexts. Research has indicated that diagnoses of 2-year-olds were significantly more stable when confirmed across two or three sources (i.e., standardized parent interview, direct child observation, and clinician’s best estimate diagnosis) as opposed to just one (Lord et al., 2006). Several instruments have been designed to aid professionals in gathering information needed to make a

instruments have been designed to aid professionals in gathering information needed to make a diagnosis of ASD. (For a more comprehensive discussion of practice parameters and diagnostic instruments, see Filipek, Accardo, & Ashwal, 2000; Klinger & Renner, 2000; Lord & Corsello, 2005; and Bishop & Lord, 2006.) Standardized parent interviews and questionnaires can be useful in eliciting information from parents about their child’s behavior. In contrast to the traditional open-ended interview,

from parents about their child’s behavior. In contrast to the traditional open-ended interview, semistructured interviews allow for a more comprehensive assessment of communication, social, and play behaviors associated with ASD and other developmental disorders. The most widely used and well-established semistructured interview that is designed to diagnose ASD is the Autism Diagnostic Interview—Revised (ADI-R; Lord, Rutter, & Le Couteur, 1994).

FIGURE 2.2. Assessing young children with suspected ASD. Medical Examination • Rule out sensory impairment (check hearing and vision). • Conduct genetic testing if indicated based on dysmorphology or family history.
• Conduct neurological exam. Parent Interview • Obtain thorough developmental history (attainment and/ or loss of motor, speech, self-help milestones).

• Administer semistructured interview to gather information about social and communication development, play, restricted and repetitive behaviors, and adaptive skills.
Child Observation • Create context in which to observe child’s social-communication behaviors, play, and repetitive behaviors (with both parent and examiner).
• Consult parents and teachers about whether behaviors observed during assessment were consistent with child’s behavior in other settings.

Developmental and Language Testing • Assess verbal (expressive and receptive) and nonverbal abilities. • Gather information about receptive and expressive language abilities. • Evaluate gross and fine motor skills.  The ADI-R provides quantifiable scores related to severity of symptoms in the areas of communication, reciprocal social interaction, and restricted and repetitive behaviors, as well as separate algorithms for verbal and nonverbal children. In order to meet criteria for a diagnosis

as separate algorithms for verbal and nonverbal children. In order to meet criteria for a diagnosis of autism, the child must meet cutoffs in Communication, Reciprocal Social Interaction, Restricted and Repetitive Behaviors and Interests, and Age of Onset. In children over the age of 3, these cutoffs have been found to clearly differentiate between children with autism and those with other disorders (Lord et al., 1994). The validity of this instrument for children under the age of 3 has not

(Lord et al., 1994). The validity of this instrument for children under the age of 3 has not been established. Therefore, a “Toddler” version of the ADI-R is undergoing development and being used in some investigations. It includes 32 additional questions and codes specifically relevant to onset of difficulties in the early years (C. Lord, personal communication, August, 2006). Because this modified instrument is not yet available for general use, professionals may decide to use the published

instrument is not yet available for general use, professionals may decide to use the published version of the ADI-R but should use caution when interpreting the scores for children under the age of 3. In particular, some studies have reported low sensitivity of the ADI-R for populations of young children because many children do not meet cutoffs in the Restricted, Repetitive and Stereotyped Patterns of Behavior Domain (Ventola et al., 2006; Chawarska, Klin, et al., 2007). Although the majority

of Behavior Domain (Ventola et al., 2006; Chawarska, Klin, et al., 2007). Although the majority of 2-year-olds with ASD exhibit RRBs (Richler et al., 2007), some of the RRB items that are currently included in the ADI-R algorithm (e.g., compulsions and rituals) may be less prevalent in very young children with ASD.

The Diagnostic Interview for Social and Communication Disorders (DISCO; Wing, Leekam, Libby, Gould, & Larcombe, 2002) is another semistructured interview designed to aid in the diagnosis of ASD. Whereas the ADI-R is a diagnostic measure of ASD, the DISCO includes questions about a wider range of difficulties and can be used to compile information necessary to diagnose other developmental and psychiatric disorders. The Development, Diagnostic and Dimensional Interview (3di; Skuse et al., 2004)

disorders. The Development, Diagnostic and Dimensional Interview (3di; Skuse et al., 2004) is a computer-based standardized interview intended to assess autism severity, as well as symptoms of comorbid conditions, such as ADHD. Although reliability and validity estimates of the 3di were high, the original validation sample of children with ASD consisted mainly of school-age children with relatively mild symptoms. Thus, the utility of the 3di for use in young children or those with more severe

mild symptoms. Thus, the utility of the 3di for use in young children or those with more severe symptoms of ASD is less well established. Information obtained through parent report is an important part of any child assessment, but direct clinical observation of the child is also required in order to make an accurate diagnosis. Observations in which the clinician simply observes the child in an unstructured context do not always elicit behaviors associated with a diagnosis of ASD. Therefore,

unstructured context do not always elicit behaviors associated with a diagnosis of ASD. Therefore, administering measures such as the Autism Diagnostic Observation Schedule—Generic (ADOS-G; Lord et al., 2000) and the Autism Observation Scale for Infants (AOSI; Bryson, Zwaigenbaum, McDermott, Rombough, & Brian, 2007) provides opportunities for the clinician to observe social, communication, and play behaviors in standardized, semi-structured contexts.

The ADOS-G is organized into four modules that correspond to various levels of language skills, and each module is composed of a standard series of tasks designed to elicit information in the areas of communication, reciprocal social behavior, and restricted and repetitive behaviors. Module 1 is intended for children who are nonverbal or who have single-word speech, which generally makes it most appropriate for use in very young children suspected of having ASD. Module 2 is designed for

most appropriate for use in very young children suspected of having ASD. Module 2 is designed for children with phrase speech, so it may also be employed in assessing highly verbal 2- and 3-year-old children with suspected ASD. Modules 3 and 4 are less relevant for the present discussion, as they are intended for children with complex sentences (i.e., sentences with two or more clauses). As with the ADI-R, a toddler version of the ADOS-G is also currently under development. In addition, new

the ADI-R, a toddler version of the ADOS-G is also currently under development. In addition, new algorithms have been developed that use the existing items of the ADOS-G to improve the sensitivity and specificity of the algorithms, especially in populations that can be difficult to classify (e.g., very young children) (see Gotham, Risi, Pickles, & Lord, 2007). Separate algorithms have been developed for children in Module 1 who use words meaningfully and spontaneously during the session and

for children in Module 1 who use words meaningfully and spontaneously during the session and those who do not, and separate modules have been developed for children under and over age 5 years who receive Module 2. These modifications have resulted in increased specificity for autism and better sensitivity and specificity for nonautism ASD in most modules. The AOSI is intended to elicit the same types of information as the ADOS-G, but it is specifically designed for infants under 18 months of

types of information as the ADOS-G, but it is specifically designed for infants under 18 months of age. Thus, in addition to play-based activities similar to those in the ADOS-G, the AOSI also includes some tasks, such as eye tracking and attention shifts, that are intended to detect very early markers of ASD. As discussed previously, initial studies using the AOSI have suggested that siblings who are later diagnosed with ASD show differences in social and communication behaviors as early as 12

are later diagnosed with ASD show differences in social and communication behaviors as early as 12 months (Zwaigenbaum et al., 2005). These play-based assessment tools help the clinician to structure the assessment context such that the child is given multiple opportunities to communicate and engage in social interactions with the examiner and parent. However, both the ADOS-G and the AOSI require extensive training to ensure standardized administration procedures and coding reliability.

A number of prospective studies have suggested that children can be accurately diagnosed with ASD as young as 24 months when using standard instruments such as the ADI-R and the ADOS-G. However, although these measures produce reliable information about very young children, their diagnostic thresholds should be carefully applied to children who have nonverbal mental ages below certain cutoffs (15 months on the ADOS-G or 18 months on the ADI-R). Research has suggested that using the ADI-R and

months on the ADOS-G or 18 months on the ADI-R). Research has suggested that using the ADI-R and ADOS-G in this population results in a high rate of misdiagnosis for children who do not have ASD but are at very low developmental levels. Therefore, as described above, researchers are currently in the process of modifying these instruments to improve their appropriateness for use with very young children. The use of these instruments with certain special populations is also not well established,

The use of these instruments with certain special populations is also not well established, as they have not been validated for use in children with severe sensory impairments (e.g., congenital blindness, profound hearing impairment) or motor difficulties (e.g., children who are not walking).

Because the selection of appropriate diagnostic instruments depends in part on the child’s developmental level and associated medical characteristics, it is essential to obtain a thorough medical and developmental history. This information is needed in order to make accurate interpretations about the child’s behavior. For example, in a child who has delayed motor milestones, such as sitting upright or walking, it is necessary to assess for general developmental delay and motor problems before

or walking, it is necessary to assess for general developmental delay and motor problems before interpreting behaviors, such as lack of babbling or poor eye contact, that may be more indicative of ASD. An adaptive behavior measure, such as the Vineland Adaptive Behavior Scales (VABS; Sparrow, Balla, & Cicchetti, 1984), can be helpful in providing estimates of a child’s general developmental level. Some researchers even suggest that children with ASD follow a particular profile on measures of

Some researchers even suggest that children with ASD follow a particular profile on measures of adaptive behavior, which could be used for diagnostic purposes (Carter et al., 1998; Paul et al., 2004), but this has not yet been examined in very young children with ASD. Researchers are beginning to examine whether profiles on developmental tests, such as the Mullen Scales of Early Learning (MSEL; Mullen, 1995), can be used to differentiate between young children with and without ASD (Landa &

Mullen, 1995), can be used to differentiate between young children with and without ASD (Landa & Garrett-Mayer, 2006).

Directly assessing a child’s developmental level is another important component of a diagnostic evaluation for ASD. Social, communication, and play behaviors cannot be accurately assessed without first knowing what is developmentally appropriate for an individual child. A toddler with moderate to severe intellectual disability who is functioning at a 1-year-old level would not be expected to communicate or interact socially at the same level as a 2-year-old with average developmental or

to communicate or interact socially at the same level as a 2-year-old with average developmental or cognitive skills. Similarly, a toddler with a language disorder would not be expected to verbally communicate as proficiently as a toddler without language delays. Therefore, incorporating developmental and language testing into the assessment battery is required in order for a clinician to interpret a child’s behavior in the context of his or her general developmental level (see Chawarska &

a child’s behavior in the context of his or her general developmental level (see Chawarska & Bearss, Chapter 3, this volume for further discussion). Because individuals on the autism spectrum often exhibit significant discrepancies between their verbal and nonverbal IQs (Joseph, Tager-Flusberg, & Lord, 2002), tests that do not rely too heavily on the use of language, such as the MSEL (Mullen, 1995), and that assess nonverbal skills separately from verbal skills, such as the Differential Ability

and that assess nonverbal skills separately from verbal skills, such as the Differential Ability Scales (DAS; Elliott, 1990), are ideal for testing children with suspected ASD or communication disorders. Assessing receptive and expressive language abilities separately is also important and can be accomplished through the use of measures such as the Sequenced Inventory of Communication Development (Hedrick, Prather, & Tobin, 1999), the Preschool Language Scale, fourth edition (PLS-4; Zimmerman,

(Hedrick, Prather, & Tobin, 1999), the Preschool Language Scale, fourth edition (PLS-4; Zimmerman, Steiner, & Pond, 2002) and the Reynell Developmental Language Scales (Reynell & Gruber, 1978) (see Paul, Chapter 4, this volume, for further discussion).

CONCLUSION There is an accumulating body of evidence to suggest that by the age of 2 years, it is possible to distinguish children with ASD from typically developing infants and those with nonspectrum developmental delays. Furthermore, longitudinal studies suggest that diagnoses of ASD are relatively stable over time. However, differentiating ASD from other kinds of developmental delays requires information from multiple sources, as well as systematic observation of the child by an experienced

information from multiple sources, as well as systematic observation of the child by an experienced clinician. Research has suggested that obtaining an accurate diagnosis of ASD early in life has important theoretical and practical implications. The earlier we are able to identify the symptoms of ASD, the closer we will come to understanding the etiology of the disorder on a genetic and neurobiological level. In addition, gathering information about the earliest indicators of ASD may provide

level. In addition, gathering information about the earliest indicators of ASD may provide insight into the core symptoms and primary deficits of the disorder. Early identification is also a crucial first step in obtaining appropriate intervention services. This is particularly important, given recent findings that earlier intervention is associated with improved outcomes.

ACKNOWLEDGMENTS The authorship of this chapter is alphabetical. Each author contributed equally to the writing of the chapter. This work was supported by Grant Nos. R01MH066496 from the National Institute of Mental Health and HD 35482-01 from the National Institute of Child Health and Human Development to Catherine Lord. Somer L. Bishop’s work was also supported in part by National Institute on Alcohol Abuse and Alcoholism Training Grant No. T32 AA 07477 to Robert Zucker, and Rhiannon

on Alcohol Abuse and Alcoholism Training Grant No. T32 AA 07477 to Robert Zucker, and Rhiannon Luyster’s work by National Research Service Award No. F31MH73210-02 from the National Institute of Mental Health.

The pathogenic factors responsible for autism spectrum disorders (ASD) affect multiple areas of functioning, producing a significant overlap between clinical presentation of young children with ASD and those with other developmental problems. Approximately 25% of children seen in a primary care setting exhibit some form of developmental delay, with speech deficits as the most common concern raised by parents of children between the ages of 1 and 5 (Filipek et al., 1999). Other developmental

by parents of children between the ages of 1 and 5 (Filipek et al., 1999). Other developmental concerns frequently reported by parents include problems with social-emotional development, adaptive behaviors (e.g., sleep or feeding problems), cognitive delays, motor skills delays, behavioral concerns (e.g., impulsivity, aggression, hyperactivity, self-stimulatory behaviors) or anxiety (Gilliam & Mayes, 2000, 2004). Moreover, owing to factors that are not fully understood, there is considerable

Mayes, 2000, 2004). Moreover, owing to factors that are not fully understood, there is considerable interindividual variability of clinical presentation among young children with ASD, complicated further by notable intraindividual variation in the level of functioning in specific domains. In addition, the developmental trajectories in children with ASD vary greatly. Some children experience accelerated rates of progress over time, whereas others experience deceleration of their skill

accelerated rates of progress over time, whereas others experience deceleration of their skill acquisition over time, resulting in significant changes in standard test scores from one assessment to another. With such a high prevalence of developmental delays both transient and enduring among young children, as well as considerable heterogeneity of the syndrome expression, discerning toddlers with ASD from those with other developmental delays can be challenging and requires careful

with ASD from those with other developmental delays can be challenging and requires careful consideration of a child’s functioning in multiple areas of development (Klin, Chawarska, Rubin, & Volkmar, 2004; Lord & Risi, 2000; see also Bishop, Luyster, Richler, & Lord, Chapter 2, and Paul, Chapter 4, this volume). This chapter reviews procedures that constitute essential components of a comprehensive developmental evaluation for young children suspected of having ASD. The assessment battery

developmental evaluation for young children suspected of having ASD. The assessment battery typically consists of standardized direct measures of development, standard interview procedures with parents and other caretakers, and unstructured clinical observations. This multisource, multimethod approach is necessary for obtaining the most reliable and valid appraisal of the child’s levels of functioning and is essential for the diagnostic considerations and educational planning. This chapter

and is essential for the diagnostic considerations and educational planning. This chapter contains descriptions of several comprehensive measures of development that can be utilized for children in their first years of life, addresses challenges associated with assessment of young children with ASD and provides a review of the existing literature on early cognitive development of children with ASD.

CORE AREAS OF DEVELOPMENT According to the widely accepted Multidomain Developmental Assessment Model, development is an interactively unfolding, continuous process that occurs in several distinct but interrelated domains (Gesell, 1948; Mullen, 1995; Piaget, 1954; Uzgiris & Hunt, 1975). Typically identified domains are (1) nonverbal cognition (e.g., visual–spatial skills, memory, discrimination and categorization skills), (2) motor skills (fine and gross), (3) verbal cognition and

and categorization skills), (2) motor skills (fine and gross), (3) verbal cognition and communication (including receptive and expressive language skills), (4) adaptive functioning (daily living skills), and (5) personal–social skills (social competence, emotional regulation) (Gilliam & Mayes, 2000, 2004). The goal of the developmental assessment is to achieve an understanding of the child’s level of functioning across a variety of domains as well as to determine how intraindividual

level of functioning across a variety of domains as well as to determine how intraindividual discrepancies in skill acquisition may affect the child’s overall level of functioning and well-being (Gilliam & Mayes, 2004). Toward this end, a thorough developmental assessment typically involves the administration of highly integrated and overlapping procedures, allowing the examiner to gain the information necessary for a diagnosis and for determining the child’s profile of strengths and deficits

necessary for a diagnosis and for determining the child’s profile of strengths and deficits in the areas of interest (Klin, Chawarska, Rubin, et al., 2004). In the assessment of a young child suspected of having an ASD, appraisal of the child’s abilities in the areas of verbal and nonverbal development, as well as adaptive skills, provides a basis for clinical interpretation of specific social and communicative skills ascertained through both standard assessment and clinical observation (Klin,

communicative skills ascertained through both standard assessment and clinical observation (Klin, Chawarska, Rubin, et al., 2004; Sparrow, Carter, Racusin, & Morris, 1995; see also Bishop et al., Chapter 2, this volume).

COMPONENTS OF THE DEVELOPMENTAL ASSESSMENT Developmental History A clinical interview, targeting the child’s medical and developmental history, onset and progression of symptoms, and family factors that may affect the child’s current presentation as well as access to treatment, is central to a comprehensive developmental evaluation. Interviews are typically conducted with parents, though input of other caregivers and medical professionals involved in the child’s care may provide relevant

of other caregivers and medical professionals involved in the child’s care may provide relevant information about the child’s functioning. The information gathered generally includes family structure and the child’s medical history, including information regarding pregnancy, delivery, postnatal course, traumatic events, presence of neurological and genetic abnormalities, sensory impairments, allergies, and so forth. An appreciation of the relevant environmental factors having to do with family

and so forth. An appreciation of the relevant environmental factors having to do with family history (e.g., birth of a sibling, separation, parental illness) or exposures (e.g., to alcohol, illicit drugs, medications, or heavy metals such as lead) is critical for diagnostic purposes as well. Furthermore, documenting the ages of attainment of the major developmental milestones, as well as the ages and circumstances of the onset of parental concerns, is crucial to an understanding of the

the ages and circumstances of the onset of parental concerns, is crucial to an understanding of the processes that may be involved in the child’s presenting symptoms (Chawarska, Paul, et al., 2007). Certain parental concerns regarding the early disruption of the developmental process, such as a slow-down, failure to progress (plateau), or loss of skills (regression), are of particular importance. Recent studies suggest that almost 90% of parents notice first concerns by the child’s second

Recent studies suggest that almost 90% of parents notice first concerns by the child’s second birthday (Chawarska, Paul, et al., 2007; De Giacomo & Fombonne, 1998). Children who are later diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) rarely trigger parental concerns in the first year of life; in contrast, approximately 30% of parents whose children were later diagnosed with autism report the first concerns prior to or around the first birthday (Chawarska,

diagnosed with autism report the first concerns prior to or around the first birthday (Chawarska, Paul, et al., 2007). Approximately 25–30% of parents of children with ASD report the loss of some skills between 18 and 24 months; this phenomenon is much more frequently reported in toddlers with autism than in those with PDD-NOS (Chawarska, Paul, et al., 2007). It should be noted that reports of loss of language skills or social interests during a certain developmental period do not preclude the

of language skills or social interests during a certain developmental period do not preclude the presence of developmental delays manifesting earlier in the child’s development (Luyster et al., 2005; Siperstein & Volkmar, 2004). Thus, the “pre-regression” period of development needs to be carefully documented as well. Parents of toddlers with autism or PDD-NOS tend to be initially concerned about their children’s limited responsivity to language, delays in speech, and limited social interests.

their children’s limited responsivity to language, delays in speech, and limited social interests. The frequency of other concerns appears to differ, depending on the child’s specific spectrum diagnosis. In children diagnosed later with autism, concerns regarding delays in attainment of motor milestones or the presence of unusual sensory interests are more prevalent than in those later diagnosed with PDD-NOS. Conversely, parents of toddlers diagnosed with PDD-NOS report more concerns related to

PDD-NOS. Conversely, parents of toddlers diagnosed with PDD-NOS report more concerns related to regulatory functions involved in feeding, sleeping, and the overall activity level, as compared with parents of toddlers with autism (Chawarska, Paul, et al., 2007). It is not clear whether the latter finding is due to an actual higher prevalence of these problems in children diagnosed with PDD-NOS, or whether these perhaps milder difficulties are overshadowed by more severe problems experienced in

whether these perhaps milder difficulties are overshadowed by more severe problems experienced in toddlers with autism. A skillfully conducted interview also provides information regarding parents’ perception of the child’s strengths and difficulties, as well as the parents’ fears associated with the process of the assessment and ideas about what the child’s symptoms may signify (Gilliam & Mayes, 2004). It is crucial for the clinicians involved in the case to fully appreciate parental ideations

2004). It is crucial for the clinicians involved in the case to fully appreciate parental ideations regarding the etiology of the observed symptoms. These can range from genetic (e.g., related to having another child with ASD), neurological (e.g., linked to a complicated perinatal course or brain structure abnormalities), environmental exposures (e.g., to specific agents such as gluten or mercury), to specific life events such as the birth of another sibling, child care arrangements, or other

to specific life events such as the birth of another sibling, child care arrangements, or other factors associated with family functioning. These ideas can be enduring and have an impact on the parents’ ability to cope with the diagnosis, as well as on the selection of and subsequent adherence to treatment (Levy, Mandell, Merhar, Ittenbach, & Pinto-Martin, 2003; see also Smith & Wick, Chapter 9, this volume). Information regarding the extent of the social support network within the family and

this volume). Information regarding the extent of the social support network within the family and broader community that is available to the parents is also essential for assisting in treatment planning for the child.

Developmental Assessment Parent-report developmental measures are often employed by professionals as screening devices aimed at clarifying whether children with suspected developmental delays require further testing, or as an aid in validating and contextualizing the results of direct standardized testing (Filipek et al., 1999). Among the scales with the strongest psychometric properties are the Ages and Stages Questionnaires, second edition (ASQ; Bricker & Squires, 1999), the Brigance Screens

Ages and Stages Questionnaires, second edition (ASQ; Bricker & Squires, 1999), the Brigance Screens (Brigance, 1986; Glascoe, 1996), and the Child Development Inventories (CDIs; Ireton, 1992; Ireton & Glascoe, 1995; see Gilliam & Mayes, 2004, for review). For diagnostic reasons and treatment planning purposes, the developmental assessment of young children presenting for a differential diagnosis of an ASD requires a direct assessment approach. The reason for such an approach is not only the

of an ASD requires a direct assessment approach. The reason for such an approach is not only the possible limitations of a parental report with regard to early development, but also the need for a detailed and systematic observation of the child’s behavior in response to standard probes. Furthermore, although a parental report typically reflects behaviors that are likely to occur in less structured environments, such as the home, the structured form of the assessment procedures resembles a

environments, such as the home, the structured form of the assessment procedures resembles a format more typically encountered in the context of a therapy session. The aim of the developmental assessment is not only to determine whether the child is meeting the expected developmental milestones in the targeted domains, but also to observe the child’s problem-solving strategies in action so as to elucidate a host of attentional, motivational, and cognitive factors that are likely to affect his

elucidate a host of attentional, motivational, and cognitive factors that are likely to affect his or her performance and influence the child’s amenability to treatment. Interactive testing also allows for documenting low-frequency and less severe symptoms that are likely to be missed by parents and can be elicited through selected behavioral probes. Two of the most widely used developmental scales with very young children are the Bayley Scales of Infant and Toddler Development, Third Edition

with very young children are the Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III; Bayley, 2006) and the Mullen Scales of Early Learning (Mullen Scales; Mullen, 1995). The Bayley-III and Mullen Scales are performance-based scales that assess a child’s development in several domains as they occur in the context of direct interaction and goal-oriented activities. Both measures have been designed to meet federal and state guidelines for early childhood assessment (e.g.,

have been designed to meet federal and state guidelines for early childhood assessment (e.g., Individuals with Disabilities Education Improvement Act of 2004) in order to determine whether a child is developing normally or may have a qualified developmental delay.

The Bayley-III has been designed to assess the developmental functioning of infants between 1 and 42 months of age. It consists of five scales: the Cognitive, Language, Motor, Social-Emotional, and Adaptive Behaviors scales. Bayley-III normative data were collected in 2004 and based on a U.S. sample of 1,700 children stratified on key demographic variables (see Bayley, 2006, for more details regarding the validity and reliability of the revised test). Of the five scales, only three are

regarding the validity and reliability of the revised test). Of the five scales, only three are administered directly to the child: the Cognitive, Language, and Motor scales. The primary goal of the Bayley-III Cognitive Scale is to assess information-processing skills, including habituation, memory, speed of processing, novelty preference, problem solving, and number concepts. The Language Scale consists of the Receptive and Expressive Communication subtests. The Receptive Communication subtest

of the Receptive and Expressive Communication subtests. The Receptive Communication subtest assesses responsiveness to sounds as well as the ability to comprehend and respond appropriately to words and requests. The Expressive Communication subtest captures the ability to vocalize (e.g., cooing, babbling, consonant and vowel production) as well as to imitate sounds and words. For older children, the focus turns to assessing the use of one-word approximations and naming pictures of objects and

the focus turns to assessing the use of one-word approximations and naming pictures of objects and actions, as well as the ability to communicate needs, respond to questions, and produce multiple-word sentences. The Motor Scale consists of the Fine and Gross Motor subtests, which focus on the child’s movement, sensory integration, perceptual–motor integration, and basic milestones of prehension and locomotion. The two remaining scales, the Social-Emotional and Adaptive Behavior scales are in

and locomotion. The two remaining scales, the Social-Emotional and Adaptive Behavior scales are in parent questionnaire format and inquire about day-to-day observations of the child’s behavior. The Social-Emotional Scale is based on the Social-Emotional Growth Chart (Greenspan, 2004), which identifies various stages of social-emotional development for children from birth to 42 months of age, including self-regulation, affective expression, and so forth. The Adaptive Behavior Scale, based on the

self-regulation, affective expression, and so forth. The Adaptive Behavior Scale, based on the Adaptive Behavior Assessment System, Second Edition (ABAS-II; Harrison & Oakland, 2003), is designed to evaluate the attainment of practical, everyday skills required for children to function and meet environmental demands. Examples of these demands include the ability to effectively and independently take care of oneself (e.g., eating, dressing, safety skills) and the ability to interact with others

care of oneself (e.g., eating, dressing, safety skills) and the ability to interact with others (e.g., peer interactions).

The second most widely used standardized and direct measure of early development is the Mullen Scales of Early Learning (Mullen, 1995). The Mullen Scales is an individually administered multidomain measure of cognitive functioning for children from birth through 68 months. Like the newly revised Bayley-III Scales, the Mullen Scales were developed on the basis of the theory that child intelligence is most accurately conceptualized as a network of interrelated but functionally distinct

is most accurately conceptualized as a network of interrelated but functionally distinct developmental skills (Mullen, 1995). The scale structure differs somewhat from that advanced in the Bayley-III. Cognitive functioning is assessed on the Mullen Scales using four core scales (Visual Reception, Receptive Language, Expressive Language, and Fine Motor). Further, a Gross Motor scale covering skills between birth and 33 months was also included because of the central role that motor control and

between birth and 33 months was also included because of the central role that motor control and mobility play in the development of skills relevant to the four cognitive domains of the Mullen Scales. Normative data were based on a sample of 1,849 children from the U.S. population (see Mullen, 1995, for details on reliability and validity). The primary targets of the Visual Reception scale are nonverbal visual discrimination, categorization, and visual memory skills. The scale minimizes the

nonverbal visual discrimination, categorization, and visual memory skills. The scale minimizes the role of language in terms of instructions and response modality, with most responses involving simple manipulation(s) of objects (e.g., searching, sorting, or matching) or pointing to or touching pictures to indicate choice. The Fine Motor scale provides a measure of visual–motor planning and control. The primary ability areas covered are unilateral and bilateral manipulation of objects and

control. The primary ability areas covered are unilateral and bilateral manipulation of objects and writing readiness, with a considerable emphasis on the ability to imitate actions modeled by the examiner. Whereas the Visual Reception and Fine Motor scales place little emphasis on the understanding of language or the ability to vocalize or verbalize in order to complete the tasks, the two language scales of the Mullen Scales focus on these abilities. The Receptive Language scale emphasizes the

scales of the Mullen Scales focus on these abilities. The Receptive Language scale emphasizes the child’s auditory comprehension and memory. As in the Bayley-III, tasks probe for responsiveness to sounds and the ability to follow simple adult-driven instructions with, and without, gestural prompting. For younger children, probes target overall responsivity to speech and nonspeech sounds, response to name, understanding of communicative gestures, and so forth. For older children, tasks require

to name, understanding of communicative gestures, and so forth. For older children, tasks require following two- and three-step directions and understanding verbal concepts (e.g., position, size, length, color, and shape). Minimal verbal output is required of the child; pointing or touching is sufficient for most items, except for general knowledge questions, which require one- to three-word responses. The Expressive Language scale evaluates the child’s spontaneous use of language. In young

The Expressive Language scale evaluates the child’s spontaneous use of language. In young children, the focus is primarily on the ability to spontaneously produce vocalizations and words. For older children, demands for language production increase, with tasks involving naming pictures, repeating numbers and phrases, and answering vocabulary and practical reasoning questions.

Adaptive Skills The term adaptive skills refers to a set of conceptual, social, and practical skills that are acquired and enable people to function in everyday situations (American Association on Mental Retardation [AAMR], 2002). Adaptive skills are typically age related, defined by expectations or standards of other people, modifiable, and defined by typical performance (Sattler & Hoge, 2006). The importance of an assessment of adaptive skills is emphasized by the AAMR (2002). Legal and

The importance of an assessment of adaptive skills is emphasized by the AAMR (2002). Legal and professional standards have been outlined regarding the development of adaptive functioning, and these standards are taken into account by a number of special education and disability classification systems (e.g., the Individuals with Disabilities Education Improvement Act of 2004 [IDEA] and DSM-IV). During infancy and early childhood, expected adaptive behavior skills include the appropriate use of

infancy and early childhood, expected adaptive behavior skills include the appropriate use of expressive and receptive language, the ability to interact with others, the emergence of social reasoning and social comprehension, basic self-care such as dressing and bathing, and participation in basic household chores. The inclusion of the assessment of adaptive functioning in the battery for young children is crucial, considering that one of the characteristic features of ASD is the observed

children is crucial, considering that one of the characteristic features of ASD is the observed discrepancy, both in children and in adults, between the levels of cognitive functioning and the ability to translate these skills into real-world functioning (Klin et al., 2007; Saulnier & Klin, 2007).

One of the most widely used and comprehensive measures of adaptive behaviors is the recently revised Vineland Adaptive Behavior Scales, second edition (Vineland-II; Sparrow, Ciccetti, & Balla, 2005). The Vineland-II is appropriate for ages birth through age 90. The Vineland-II has four forms: Survey Interview Form, Parent/Caregiver Rating Form, Expanded Interview Form, and Teacher Rating Form. The Survey and Expanded Interview Forms are clinician-administered semistructured interviews, and the

Survey and Expanded Interview Forms are clinician-administered semistructured interviews, and the Parent/Caregiver and Teacher Rating Forms are questionnaires designed to capture the adaptive behavior of the child in the home or school setting, respectively. The Survey and Caregiver Rating Forms contain eleven subdomains grouped into four adaptive behavior domains: Communication, Daily Living Skills, Socialization, and Motor Skills. These versions also include a Maladaptive Behavior Domain that

Socialization, and Motor Skills. These versions also include a Maladaptive Behavior Domain that measures undesirable behaviors that may interfere with a child’s adaptive behavior. Normative scores as well as age-equivalent scores are provided for each of the subdomains and domains, allowing a detailed analysis of a child’s individual profile of strengths and weaknesses. The recent revision resulted in an increased item density in the birth–3 years age range, thus enhancing the scales’ validity

in an increased item density in the birth–3 years age range, thus enhancing the scales’ validity and reliability in this population. Finally, the revised version includes supplementary norms for children with autism ages 3–16 (Sparrow et al., 2005). A nationally representative sample of 3,695 individuals from birth through 90 years of age provided normative data (see Sparrow et al., 2005, for details on validity and reliability).

CHALLENGES IN TESTING YOUNG CHILDREN WITH ASD Due to specific deficits in social attention and motivation, nonverbal communication, and imitation, as well as the presence of self-stimulatory behaviors, the administration of standardized tests to young children with ASD can be challenging, though the types of difficulties vary widely from child to child (Akshoomoff, 2006; Koegel, Koegel, & Smith, 1997; National Research Council, 2001). For some toddlers with ASD, the highly structured and

1997; National Research Council, 2001). For some toddlers with ASD, the highly structured and well-defined context of a developmental test plays to their strengths, which may include good response to novelty and an interest in visual discrimination and perceptual matching skills. Thus, these toddlers may have little difficulty in completing a developmental test. In other cases, the extent of difficulties a child experiences during an assessment may raise a question as to whether the testing is

a child experiences during an assessment may raise a question as to whether the testing is capturing the child’s test-taking difficulties rather than his or her cognitive disability (see, e.g., Neisworth & Bagnato, 2004). Thus, the testing of young children with ASD requires not only extensive knowledge of typical and atypical development in general, but also familiarity with strategies that can be employed to enhance the children’s attention and motivation without compromising the standardized

employed to enhance the children’s attention and motivation without compromising the standardized test administration procedures. As an inherent part of their disability, young children with autism exhibit decreased orienting to social stimuli, such as faces (Dawson, Meltzoff, Osterling, Rinaldi, & Brown, 1998; Klin, Jones, Schultz, Volkmar, & Cohen, 2002; Volkmar & Mayes, 1990), as well as to human speech and gestures (Adamson, McArthur, Markov, Dunbar, & Bakeman, 2001; McArthur & Adamson,

human speech and gestures (Adamson, McArthur, Markov, Dunbar, & Bakeman, 2001; McArthur & Adamson, 1996; Mundy & Burnette, 2005; Paul, Chawarska, Fowler, Cicchetti, & Volkmar, 2007; Wetherby et al., 2004). This limited ability to respond to social cues, limited motivation to master and “show off” new skills, and difficulty in regulating attention often leads to a significant amount of the assessment time spent “on break,” out of the chair (Chawarska, Klin, Paul, & Volkmar, 2007) or whining

time spent “on break,” out of the chair (Chawarska, Klin, Paul, & Volkmar, 2007) or whining (Akshoomoff, 2006). Infants and toddlers with ASD do not typically monitor the attention of others (e.g., have difficulties looking at pictures or objects that others look at, touch, or point to) (Charman et al., 2001; Chawarska, Klin, et al., 2007; Cox et al., 1999; Wetherby et al., 2004), which reflects their inherent difficulty in responding to bids for joint attention (Tomasello, 1995). Consequently,

inherent difficulty in responding to bids for joint attention (Tomasello, 1995). Consequently, these children have difficulty in completing probes whereby the examiner attempts to redirect a child’s attention to an object or a picture, in order to, for example, examine his or her language skills. Furthermore, the completion of a number of tasks on developmental tests requires some level of motor imitation (e.g., building block structures, drawing following a model) and the use of gestures

imitation (e.g., building block structures, drawing following a model) and the use of gestures (e.g., pointing, giving, showing). These skills typically are impaired in young children with ASD (Rogers, Hepburn, Stackhouse, & Wehner, 2003).

Even when taking into account these obstacles related to both age and type of disability, standardized assessments of young children with ASD are necessary, and there are no “untestable” children. Problems with testing usually stem from the selection of an inappropriate assessment instrument, insufficient time allotted to the assessment, or the limited experience of a clinician (Ozonoff, Goodlin-Jones, & Solomon, 2005). Moreover, the difficulties experienced by a child during standardized

& Solomon, 2005). Moreover, the difficulties experienced by a child during standardized assessment are not simply barriers, but constitute a vital source of clinical information relevant to diagnosis and treatment planning. Considering that for each individual toddler, different factors may influence his or her ability to participate in testing, it is necessary to obtain information about such factors through direct observation and parent interview prior to the testing session (Koegel et al.,

through direct observation and parent interview prior to the testing session (Koegel et al., 1997). Unstructured behavioral observations (e.g., during an interaction with the parent or solitary play) provide an opportunity to gather information about the child’s interests, predominant mode of object exploration, ability to attend to and monitor behaviors of others, ability to initiate social and communicative exchanges, and ability to regulate emotions. An opportunity to determine the presence

communicative exchanges, and ability to regulate emotions. An opportunity to determine the presence and intensity of self-stimulatory behaviors and motor mannerisms is also likely to aid in the assessment process by providing clues regarding environmental modifications that may facilitate the child’s participation in the testing procedures. Furthermore, a brief interview with a parent may provide additional information regarding specific aspects of the testing situation that are likely to

additional information regarding specific aspects of the testing situation that are likely to interfere with test administration (e.g., presence of mirrors, background noises such as air-conditioning, or specific objects of strong attachment such as balls or spoons, that are likely to consume the child’s entire attention). Parents can also identify a list of possible reinforcers that are likely to enhance the child’s attention to and compliance with the task demands. Owing to a child’s lack of

enhance the child’s attention to and compliance with the task demands. Owing to a child’s lack of intrinsic social orientation and motivation to engage in interactions, standard methods of encouraging performance (i.e., verbal praise and affective cues such as smiling) may not be effective for maintaining attention and on-task behaviors. Thus, other forms of reinforcement may be more useful. The choice of reinforcer is often idiosyncratic. An opportunity to momentarily hold a preferred toy upon

of reinforcer is often idiosyncratic. An opportunity to momentarily hold a preferred toy upon completion of a task (e.g., an object of a strong attachment), repeat a preferred activity (e.g., dropping blocks into a container or lining up cars), gain access to a preferred physical routine (e.g., “row, row, row your boat” or tickle game), or have a small snack (e.g., a sip of juice) may provide additional motivational support and facilitate completion of the test. For some children, encouragement

motivational support and facilitate completion of the test. For some children, encouragement strategies such as applause, cheering, and touching may seem overwhelming or aversive and actually contribute to their difficulty in completing the test. For other children, high affect and physical contact (e.g., tickling) may prove very effective in maintaining their optimal level of arousal and attention. Furthermore, the use of specific phrases (e.g., “first . . . then”) or visual supports (e.g.,

Furthermore, the use of specific phrases (e.g., “first . . . then”) or visual supports (e.g., picture schedules) may provide the child with a certain degree of predictability and create expectation of a reward, which in turn may help to maintain an alert and engaged state. It should be noted that these strategies usually work with toddlers who have had experience with structured intervention programs and have acquired the cognitive skills necessary for grasping and benefiting from such

programs and have acquired the cognitive skills necessary for grasping and benefiting from such contingencies. Adopting a fast pace, with one task or trial swiftly following another in a play-like manner, and avoiding superfluous breaks in between tasks helps young children with ASD to remain engaged and may prevent them from drifting into off-task behaviors.

Physical prompting such as gentle touching, tapping, and redirecting can also be used as needed to promote on-task behavior. Furthermore, a vast majority of children with ASD in this age range have very limited attention to speech and difficulty in understanding language (Chawarska, Klin, et al., 2007; Wetherby et al., 2004). Thus, instructions often have to be simplified and, whenever possible, accompanied by multiple nonverbal (e.g., gestural), physical (e.g., tapping on table to attract

accompanied by multiple nonverbal (e.g., gestural), physical (e.g., tapping on table to attract attention, or moving testing materials into the child’s visual field), and affective cues. Despite these efforts, the examiner may still encounter instances when the child refuses to attempt completion of a task. Although fatigue or noncompliance can play a role and needs to be ruled out before the test results are deemed valid, studies of neuropsychological task performance among preschoolers

test results are deemed valid, studies of neuropsychological task performance among preschoolers suggest that test refusals typically reflect poor skills in a given area or an attempt to avoid failure. Higher rates of refusal on cognitive tasks are often predictive of lower scores on cognitive tests later in development (Mantynen, Poikkeus, Ahonen, Aro, & Korkman, 2001).

THE ROLE OF PARENTS IN STRUCTURED ASSESSMENT Parents play an important role in the developmental and diagnostic assessment process. Parental presence may help the child adjust to the new situation and reassure the child throughout the testing. Incidental parent–child interactions provide essential information to the clinician regarding the child’s spontaneous functional social and communication skills. Parents can also provide information necessary for judging the typicality of behaviors

skills. Parents can also provide information necessary for judging the typicality of behaviors observed during the standardized testing. Finally, their involvement can be crucial in revealing contextualized skills, which may become apparent only with a specific interactive partner or with use of specific prompts. Although these aspects of the child’s performance rarely find their way into the standard scoring procedures, they provide rich clinical information regarding the child’s learning and

scoring procedures, they provide rich clinical information regarding the child’s learning and affective style and the ability to generalize skills across contexts. Although parental involvement in the assessment is important for the child’s success and the clinician’s overall impressions, participation in an assessment of a child suspected of having a developmental disorder can be very stressful for parents. Parental stress may stem from the fact that many delays and abnormalities often become

for parents. Parental stress may stem from the fact that many delays and abnormalities often become painfully apparent in the process (see Bailey, Chapter 11, this volume; Gilliam & Mayes, 2004). Briefing parents on the nature of the tests can help alleviate some stress. Explaining that in order to fully appreciate the child’s developmental skills, tasks that seem easy as well as difficult will be administered, and thus, because of the nature of the test, several failures are expected. Toddlers

administered, and thus, because of the nature of the test, several failures are expected. Toddlers in general can be quite self-directed; their moods change quickly and so do their levels of cooperation. This is particularly true of toddlers with developmental disabilities. One of the chief concerns of parents entering a diagnostic process with their toddler is whether the examiners will be able to obtain a representative sample of their child’s behavior and, consequently, whether their

able to obtain a representative sample of their child’s behavior and, consequently, whether their conclusions will be valid. It is absolutely essential to reassure parents that special care will be taken to obtain the child’s optimal performance and that their input regarding whether the behaviors observed during testing are representative of those seen on a daily basis will play an important role in the diagnostic process. The formation of an alliance with the parents at the beginning of the

in the diagnostic process. The formation of an alliance with the parents at the beginning of the assessment process can facilitate discussion regarding specific test results, their implications for the diagnosis, and the strategies that will need to be adopted to remedy the documented problems. Parents who are convinced as to the validity of the assessment are more likely to follow up on the recommendations, become active members of the therapeutic team, and advocate more effectively on behalf

become active members of the therapeutic team, and advocate more effectively on behalf of their children (see Bishop et al., Chapter 2; Wetherby & Woods, Chapter 7; and Bailey, Chapter 11, this volume).

INTERPRETATION AND REPORTING OF THE DEVELOPMENTAL FINDINGS Reporting the developmental findings in infants and toddlers with ASD usually involves synthesizing the medical and developmental history, reviewing behavioral observations throughout the course of testing, describing the results of individual tests in terms of the child’s capacities in different functional areas (e.g., motor, cognitive, language, and social skills), and integrating these findings with the parental report regarding the

language, and social skills), and integrating these findings with the parental report regarding the child’s typical behaviors and repertoire of adaptive skills (Gilliam & Mayes, 2004; Filipek et al., 1999; Klin, Chawarska, Rubin, et al., 2004; National Research Council, 2001). The primary purpose of documenting the child’s clinical presentation is to communicate to parents and professionals, in the most accessible and precise manner possible, the information necessary for designing a treatment

most accessible and precise manner possible, the information necessary for designing a treatment plan and for monitoring the child’s rate of progress over time as a function of treatment and maturation. It is extremely important that the summary place emphasis not only on the child’s delays and abnormalities, but also on his or her unique strengths, relative to peers and to the child’s other areas of functioning (e.g., relative strength in visual discrimination skills, marked curiosity and

areas of functioning (e.g., relative strength in visual discrimination skills, marked curiosity and ability to learn means–ends contingencies, or the ability to handle novel situations and transitions), as they are highly consequential for designing effective individualized treatment plans. In the interpretation of the child’s profile of verbal, nonverbal, motor, and adaptive skills, it is often necessary to consider the limitations inherent to each of the assessment instruments. For instance,

necessary to consider the limitations inherent to each of the assessment instruments. For instance, although a young child may score in the average range on the formal testing of receptive and expressive language, these scores may not be reflective of the child’s functional communication skills—that is, the ability to use language to share ideas and make requests. In fact, dissociation between the ability to produce speech and to use it functionally is one of the core features of communication

ability to produce speech and to use it functionally is one of the core features of communication disorder in ASD. Therefore, supplementing the standardized developmental assessment with an appraisal of the levels of functional verbal and nonverbal communication usually constitutes an integral part of a developmental assessment (see Paul, Chapter 4, this volume).

DEVELOPMENTAL SKILLS OF YOUNG CHILDREN WITH ASD Early observations (Kanner, 1943/1968) and more recent experimental studies (Charman et al., 1997; Cox et al., 1999; Dawson & Adams, 1984; Dawson, Meltzoff, Osterling, & Rinaldi, 1998; Dawson et al., 2002; Mundy, Sigman, & Kasari, 1990; Mundy, Sigman, Ungerer, & Sherman, 1986; Sigman & Ungerer, 1981, 1984) suggest that in the first years of life, the development of children with autism is characterized by significant intraindividual scatter. In

the development of children with autism is characterized by significant intraindividual scatter. In older children, the scatter may be reflected, for instance, in a split between verbal and nonverbal skills, greater delays in adaptive than cognitive functioning, and selective impairments in executive functioning, nonverbal communication, pragmatics of language, and social interactions (Ehlers et al., 1997; Freeman, Del’Homme, Guthrie, & Zhang, 1999; Joseph, Tager-Flusberg, & Lord, 2002; Klin,

al., 1997; Freeman, Del’Homme, Guthrie, & Zhang, 1999; Joseph, Tager-Flusberg, & Lord, 2002; Klin, Volkmar, & Sparrow, 1992; Klin, Volkmar, Sparrow, Cicchetti, & Rourke, 1995; Saulnier & Klin, 2007; Volkmar et al., 1994). Several recent studies provide direct insights into the developmental functioning of children with ASD in the first 3 years of life. The evidence suggests that a considerable proportion of infants and toddlers with ASD experience significant delays in one or more areas. For

proportion of infants and toddlers with ASD experience significant delays in one or more areas. For instance, Akshoomoff (2006) examined developmental skills in a small group of young (mean age 30 months) children with ASD and noted that almost 75% of toddlers experienced very significant delays in at least one of the areas tapped by the Mullen Scales. The delays in the area of verbal functioning are often much more severe than those in the nonverbal domain (Akshoomoff, 2006; Carter et al.,

are often much more severe than those in the nonverbal domain (Akshoomoff, 2006; Carter et al., 2007; Charman, Baron-Cohen, et al., 2003; Charman et al., 1997; Eaves & Ho, 2004; Landa & Garrett-Mayer, 2006; Wetherby et al., 2004). However, this type of verbal–nonverbal discrepancy has also been noted in children with other developmental disabilities, and thus, in and of itself, does not appear to be syndrome-specific (Eaves & Ho, 2004; Landa & Garrett-Mayer, 2006). The extent of cognitive

to be syndrome-specific (Eaves & Ho, 2004; Landa & Garrett-Mayer, 2006). The extent of cognitive delays appears to be associated with the degree of autistic psychopathology even in very young children. Chawarska (2007) report that although less than 20% of infants diagnosed with autism prior to the second birthday had significant delays (2 SD below the mean) in nonverbal functioning on the Mullen Scales, almost 70% had significant delays in expressive and receptive language skills (Chawarska,

Scales, almost 70% had significant delays in expressive and receptive language skills (Chawarska, 2007). In comparison, those later diagnosed with PDD-NOS tended to have relatively spared nonverbal skills; still, more than 40% received verbal scores in the very low range. Furthermore, studies on older children with ASD document the presence of a significant discrepancy between receptive and expressive language on standardized tests (Charman, Drew, Baird, & Baird, 2003; Joseph et al., 2002; Lord

language on standardized tests (Charman, Drew, Baird, & Baird, 2003; Joseph et al., 2002; Lord & Paul, 1997). Recent studies suggest that a similar pattern can be observed in toddlers with ASD (Paul, Chawarska, Klin, & Volkmar, 2006; see also Paul, Chapter 4, this volume). These findings are not surprising, as early receptive language skills encompass general responsivity to speech, orientation to name and other high-frequency words imbued with affective content (e.g., “no,” “mama”), as well as

name and other high-frequency words imbued with affective content (e.g., “no,” “mama”), as well as response to social smile and conventional gestures. These particular skills have been found to be deficient in infants and toddlers with autism (Baranek, 1999; Baron-Cohen, Cox, Baird, Swettenham, & Nighingale, 1996; Lord, 1995; Mundy, Sigman, & Kasari, 1994; Osterling, Dawson, & Munson, 2002; Stone, Ousley, Yoder, Hogan, & Hepburn, 1997). At the same time, these children often are capable of

Ousley, Yoder, Hogan, & Hepburn, 1997). At the same time, these children often are capable of producing a range of consonant sounds as well as single words (Charman, Drew, et al., 2003; Paul et al., 2006; see also Paul, Chapter 4, this volume), which is reflected in the expressive language scores, even though these vocalizations may be only rarely used communicatively.

Stability and Change in the Levels of Functioning in the First Years Several longitudinal studies provide insight into the developmental trajectories of young children with ASD. As compared with typical peers and children with other developmental difficulties, children with ASD may show a relatively slow rate of development that becomes particularly noticeable early in the second year of life (Landa & Garrett-Mayer, 2006). Landa and Garret-Mayer (2006) followed a large group of infants at 6,

& Garrett-Mayer, 2006). Landa and Garret-Mayer (2006) followed a large group of infants at 6, 14, and 24 months of age. A majority of the infants belonged to a high-risk group, as defined by having an older sibling with an ASD, and the remaining group was considered low-risk because of a family history negative for ASD. At 24 months of age, some of the infants were diagnosed with ASD or language delay and a majority of infants were deemed unaffected. Although there were no significant

language delay and a majority of infants were deemed unaffected. Although there were no significant differences between the ASD and control groups in performance on the Mullen Scales at 6 months, differences began to emerge at 14 months. Infants with ASD had lower raw scores in the verbal and motor domains but not in the nonverbal cognitive domain as compared with unaffected infants. A comparison with infants with language delays revealed that infants with ASD had significantly greater delays

with infants with language delays revealed that infants with ASD had significantly greater delays in the receptive language and fine motor domains, but not in the expressive language or nonverbal domains. As time progressed, the gap between the ASD and language-delayed groups, as well as the unaffected groups, widened further owing to the slow rate of progress in the ASD group. There also appear to be differences in the rate of development among infants with various subtypes of ASD. Differences

be differences in the rate of development among infants with various subtypes of ASD. Differences in cognitive functioning between autism and PDD-NOS groups are usually apparent in older children; however, in toddlers these differences are somewhat less pronounced (Chawarska, Klin, et al., 2007; Lord et al., 2006). In one study (Chawarska, Klin, et al, 2007) a group of infants diagnosed with an ASD prior to their second birthday was followed until the age of 3–4 years, at which point some of

ASD prior to their second birthday was followed until the age of 3–4 years, at which point some of them received a diagnosis of autism, and others PDD-NOS. Although prior to the second birthday, toddlers in the two diagnostic groups performed comparably on a developmental test, by the follow-up assessment the differences in developmental levels between the two diagnostic groups became apparent. By the age of 3 years, toddlers diagnosed with PDD-NOS had higher verbal and nonverbal scores on the

the age of 3 years, toddlers diagnosed with PDD-NOS had higher verbal and nonverbal scores on the Mullen Scales than their peers with autism. The trend leading to divergent outcomes in terms of IQ and adaptive skills continues as children grow older, so that when evaluated at the age of 9 years, children with PDD-NOS show consistently higher levels of verbal, nonverbal, and adaptive functioning as compared with their peers with autism, even though their initial levels of functioning at the age

compared with their peers with autism, even though their initial levels of functioning at the age of 2 were rather similar (Lord et al., 2006).

Exclusive focus on changes at the level of group means can mask the presence of significant individual variability in the early developmental trajectories of children with ASD (Charman et al., 2005; Chawarska, 2007; Eaves & Ho, 2004; Klin, Chawarska, Paul, et al., 2004). The period between the ages of 2 and 4 years appears to be particularly notorious for limited stability of cognitive skills. Although some suggest that the limited predictive value of developmental tests administered prior to

some suggest that the limited predictive value of developmental tests administered prior to the age of 3 may be due to the nature of a specific measure, similar results have been reported using instruments such as the Griffiths Scales (Charman et al., 2005), the Mullen Scales (Chawarska, 2007), and the Bayley Scales (Eaves & Ho, 2004; Yang, Huang, Schaller, Wang, & Tsai, 2003). Charman and colleagues (2005) documented that a correlation between verbal and nonverbal cognitive scores at 2 and 3

(2005) documented that a correlation between verbal and nonverbal cognitive scores at 2 and 3 years was only moderate and that the correlation between 2 and 7 years scores was close to zero. The scores began to stabilize after the age of 3 years and were moderately predictive of the scores at the age of 7 years. Several other studies documented specific change patterns in the levels of cognitive functioning within the first 3–4 years of life. For instance, Eaves and Ho (2004) reported that in a

within the first 3–4 years of life. For instance, Eaves and Ho (2004) reported that in a group of toddlers with ASD evaluated at the age of 2 and followed up approximately 2 years later, 20% of the children declined dramatically in standard verbal and nonverbal scores, and approximately 30% showed significant gains in verbal scores. The remaining 50% of the children showed less dramatic changes in either direction. Another study of a relatively large cohort of children diagnosed with ASD in the

either direction. Another study of a relatively large cohort of children diagnosed with ASD in the second year and followed into the third to fourth year suggested that the individual change patterns depend on both the area of functioning and the extent of autistic pathology (Chawarska, 2007). When assessed prior to the second birthday, only 30% of toddlers with autism had verbal scores in the average to below average range as measured by the Mullen Scales. When their verbal skills were

the average to below average range as measured by the Mullen Scales. When their verbal skills were evaluated 1–2 years later, 20% of the children maintained their average to below average scores and an additional 30% improved their verbal skills, reaching the average to below average range. However, the remaining 50% of the toddlers with autism tested very poorly at the age of 3–4: Forty percent maintained their very low scores and almost 10% showed a very slow rate of skill acquisition,

maintained their very low scores and almost 10% showed a very slow rate of skill acquisition, leading to a decline in standard scores. As far as nonverbal skills were concerned, even though a majority of infants (75%) with autism tested within the average to below average range at their first assessment, at follow-up this rate dropped to approximately 50%. In contrast, toddlers with PDD-NOS showed much more encouraging individual skill acquisition patterns. Although at the first visit verbal

much more encouraging individual skill acquisition patterns. Although at the first visit verbal skills were significantly delayed in approximately 45% of children, at follow-up all toddlers with PDD-NOS had verbal scores in the average to below average range, with 55% maintaining their relatively good scores and 45% making significant improvements. A similar pattern was noted in the nonverbal domain for this diagnostic group. These observations suggest that the rates of progress between the

domain for this diagnostic group. These observations suggest that the rates of progress between the second and third years of life are highly variable. The short-term outcomes in terms of verbal and nonverbal skills in toddlers with autism is relatively good in about 50% of cases, with the remaining toddlers evidencing either maintenance of very low scores or a decline in standard scores by the early preschool age. Toddlers with PDD-NOS typically show a relatively good rate of progress,

the early preschool age. Toddlers with PDD-NOS typically show a relatively good rate of progress, reflected either in the maintenance of average to below average scores or in gains in standard scores in both verbal and nonverbal domains. Extending such prospective studies into adolescence can allow the examination of long-term outcomes in infants diagnosed early with ASD and can provide crucial information regarding predictors of outcome as well as moderating and mediating factors.

ADAPTIVE LEVELS OF FUNCTIONING OF YOUNG CHILDREN WITH ASD For most children, adaptive behavior skills that are learned in one setting are readily generalized to other situations or environments. The application of such skills across contexts, or skill generalization, presents a significant challenge for children with ASD. A number of studies (Bolte & Poustka, 2002; Gillham, Carter, Volkmar, & Sparrow, 2003; Freeman, Ritvo, Yokota, Childs, & Pollard, 1988; Klin et al., 2007; Saulnier & Klin,

Sparrow, 2003; Freeman, Ritvo, Yokota, Childs, & Pollard, 1988; Klin et al., 2007; Saulnier & Klin, 2007; Stone, Ousley, Hepburn, Hogan, & Brown, 1999; Volkmar, Carter, Sparrow, & Cicchetti, 1993) have documented a characteristic pattern of adaptive skills in children with autism. Many children with autism exhibit adaptive behavior scores that are almost 1 SD lower than what would be expected for their intellectual level (Carter et al., 1998; Klin et al., 2007; Saulnier & Klin, 2007; Williams

their intellectual level (Carter et al., 1998; Klin et al., 2007; Saulnier & Klin, 2007; Williams et al., 2006). This discrepancy exists even for children with below average cognitive functioning and within the restricted skill range of young children, so that some children are failing to achieve even elemental skills that are otherwise normally acquired in the first months of life (Klin et al., 1992). The reasons for this cognitive–adaptive functioning gap may differ, depending on the specific

The reasons for this cognitive–adaptive functioning gap may differ, depending on the specific domain. Difficulties in socialization and communication constitute core deficits in autism, so it is not surprising that they typically fall below the child’s cognitive levels. For children with autism, daily living skills such as practicing self-care (e.g., getting dressed) and following household routines may be directly affected by noncompliance (Kraijer, 2000). Determining a child’s current

routines may be directly affected by noncompliance (Kraijer, 2000). Determining a child’s current adaptive functioning is vital for subsequent programming development, as it should focus on minimizing the disparity between what the child should be able to do (based on cognitive functioning) and what he or she actually does on a daily basis (as illustrated by the child’s adaptive skill set). Currently, there are only a few peer-reviewed reports focused on Vineland profiles for preschool-age

there are only a few peer-reviewed reports focused on Vineland profiles for preschool-age children with autism. Most studies include preschool-age children as part of a larger sample, thus limiting the ability to comment on the characteristics of Vineland profiles specifically within preschoolers. For example, Carter and colleagues (1998) developed supplementary normative data on the Vineland for individuals with autism, but categorized their normative data based on the children under 10 years

individuals with autism, but categorized their normative data based on the children under 10 years of age versus children 10 years or older. Carpentieri and Morgan (1996) compared the adaptive and intellectual functioning of autistic and nonautistic children with a sample that included preschool age children, but the mean age of the entire sample was 8. Nonetheless, although still limited, the evidence suggests that children with autism under the age of 3 years begin to demonstrate a

the evidence suggests that children with autism under the age of 3 years begin to demonstrate a characteristic profile of deficits in adaptive skills seen in older children (Stone et al., 1999). Stone and colleagues compared adaptive skills in 30 toddlers with autism with 30 children with global delays or language impairments. Toddlers with autism had significantly lower scores in the Socialization and Communication domains of the Vineland and greater adaptive skills versus mental age

and Communication domains of the Vineland and greater adaptive skills versus mental age discrepancies than their nonautistic peers. Although there is evidence from both longitudinal (Freeman et al., 1999) and cross-sectional studies (Klin, et al., 2007) suggesting that children with ASD acquire adaptive skills over time, information on the rate of skill acquisition is relatively limited. When standard rather than age-equivalent scores are considered, significant declines over time are typically

rather than age-equivalent scores are considered, significant declines over time are typically reported. For instance, Szatmari, Bryson, Boyle, Streiner, and Duku (2003) documented a decline in Vineland Socialization standard scores and relatively stable scores in the Communication domain in a sample seen initially at 4–6 years and followed at 12–14 years. The decline in standard scores in the Vineland Socialization and Communication domains, but not in the Daily Living Skills domain, has been

Socialization and Communication domains, but not in the Daily Living Skills domain, has been reported recently in two independent cross-sectional samples of 7- to 18-year-old high-functioning children with ASD (Klin et al., 2007). Thus, although children with ASD continue to acquire new adaptive skills, their rate of progress tends to be slow, leading to a widening of the gap in adaptive functioning as compared with typical peers. Both early language and nonverbal skills have been found to

as compared with typical peers. Both early language and nonverbal skills have been found to predict outcomes as captured by the Vineland Communication and Socialization domains (Szatmari et al., 2003; Saulnier & Klin, 2007). Considering the importance of acquiring adaptive skills for the overall quality of life for children with ASD, future studies should evaluate not only the developmental trajectories of children with ASD in regard to these skills, but also factors that affect rates of

trajectories of children with ASD in regard to these skills, but also factors that affect rates of progress besides initial IQ and extent of the autistic disability (McGovern & Sigman, 2005).

THE ROLE OF DEVELOPMENTAL ASSESSMENT IN DIAGNOSTIC CONSIDERATIONS The assessment of cognitive and adaptive skills constitutes an integral element of diagnostic assessment (American Psychiatric Association, 2000; see also Bishop et al., Chapter 2, this volume). Interpreting results of the diagnostic measures within the child’s specific developmental context represent a cornerstone of best practices in the early diagnosis of developmental disorders. At present, the responsibility for integrating

in the early diagnosis of developmental disorders. At present, the responsibility for integrating information from multiple sources and weighing their relative significance with regard to diagnosis falls to experienced clinicians. It is hoped that the growing numbers of prospective studies of children identified as having ASD in the second and third years of life will result in identification of performance profiles involving multiple areas of functioning that are specific to various subtypes

performance profiles involving multiple areas of functioning that are specific to various subtypes within ASD and will allow for differentiating them from toddlers with other developmental disabilities. This knowledge, in turn, can inform and enrich the diagnostic process. Preliminary results of a prospective study on early diagnosis of ASD highlight the utility of such an approach (Chawarska, Klin, & Volkmar, 2003). Simultaneous consideration of the child’s level of verbal and nonverbal skills

& Volkmar, 2003). Simultaneous consideration of the child’s level of verbal and nonverbal skills along with the levels of dysfunction in the areas of socialization, communication, play, and stereotyped behaviors, greatly enhanced the diagnostic classification procedure allowing for more accurate differentiation of toddlers with autism, PDD-NOS, global developmental delay, and specific language disorders. Identifying dimensions relevant for differential diagnosis of ASD in early development, as

Identifying dimensions relevant for differential diagnosis of ASD in early development, as well as unique performance profiles characteristic of various subtypes of ASD, would greatly advance the field of early diagnosis, and further work on this important topic is necessary.

CONCLUSIONS Developmental assessment of infants and toddlers with developmental disabilities is a complex and multileveled process. It results typically in establishing a child’s levels of verbal, nonverbal, exploration, adaptive, and motor skills, as well as ascertaining the role of arousal, attention, affect regulation, and motivational factors that might have an impact on the child’s learning style and the level of adaptive functioning. Furthermore, documenting the possible impact of

style and the level of adaptive functioning. Furthermore, documenting the possible impact of biological and environmental factors, including family circumstances and access to services, provides complementary information necessary for the interpretation of test findings and designing an intervention plan. Although data on early developmental trajectories of young children with ASD are still limited, a coherent picture is beginning to emerge. A vast majority of infants and toddlers with ASD

a coherent picture is beginning to emerge. A vast majority of infants and toddlers with ASD experience significant delays in at least one key area of development. It is likely that their developmental trajectories in verbal and nonverbal domains do not begin to diverge markedly from those with other developmental difficulties until the second year of life. The magnitude of the delay is often much greater in the verbal than in the nonverbal domain. Furthermore, very young children with autism

greater in the verbal than in the nonverbal domain. Furthermore, very young children with autism appear to have more profound delays in the ability to respond to and understand language than in the ability to produce vocalizations and speech sounds. The rate of progress in the first 3–4 years of life among children with ASD is highly variable, with a considerable proportion of toddlers either making very significant gains or experiencing a slowdown in the rate of skill acquisition within a 1-

very significant gains or experiencing a slowdown in the rate of skill acquisition within a 1- to 2-year period. Thus, the early scores on developmental tests in toddlers with ASD are not very good predictors of the cognitive levels observed in the early school years. The individual trajectories begin to stabilize after the age of 4, at which time cognitive scores become more predictive of later developmental functioning. The differences in the levels of verbal and nonverbal functioning between

functioning. The differences in the levels of verbal and nonverbal functioning between toddlers with autism and those with PDD-NOS are relatively minor early in development; nonetheless, toddlers with PDD-NOS show, in general, a better rate of progress and are more likely to achieve scores in the normative range than their peers with autism by early preschool age. Changes in cognitive functioning are, in most cases, accompanied by the acquisition of adaptive skills necessary for functioning in

are, in most cases, accompanied by the acquisition of adaptive skills necessary for functioning in day-to-day situations. However, the acquisition rates of adaptive skills lag behind those observed in the verbal and nonverbal cognitive domains, emphasizing the necessity of including adaptive skills training into the early intervention program. The upcoming several years will bring to light a fascinating body of evidence regarding early developmental trajectories of children with ASD, as the

body of evidence regarding early developmental trajectories of children with ASD, as the currently ongoing prospective studies of younger siblings of children with ASD reach their conclusions. Particularly important will be further clarification regarding the areas of cognitive development that are the most relevant for diagnostic, prognostic, and treatment purposes, possibly with greater differentiation into specific skills related to attention, learning, memory, concept development,

differentiation into specific skills related to attention, learning, memory, concept development, imitation, and exploration. The identification of specific performance profiles linked to specific developmental disorders as they are expressed at various early stages of development can lead to early and more accurate diagnosis and earlier implementation of the most appropriate intervention strategies for a given disorder.

Communication deficits are one of the core symptoms of autism spectrum disorders (ASD). Therefore, tracing the development of communication in this syndrome is central to understanding its early course and trajectory of impairment. Although the terms language and communication are sometimes used synonymously, it is important in this context to be aware that deficits in the ability to communicate are evident prior to the acquisition of language in very young children with ASD. Although children

are evident prior to the acquisition of language in very young children with ASD. Although children with ASD are frequently delayed in their acquisition of first words and in their use of words and sentences to express needs and interact with others, this delay is foreshadowed by early-appearing deficits in the use of gaze, gestures, and vocalizations to accomplish the same goals, as well as in the tendency to orient and listen to speech. In this chapter, the early communication of infants and

tendency to orient and listen to speech. In this chapter, the early communication of infants and toddlers with typical development is outlined and contrasted with what is known about this sequence in ASD. In addition, communication development is discussed in three areas: preverbal development, understanding of spoken language, and first use of words and word combinations.

PREVERBAL COMMUNICATIVE DEVELOPMENT Early Perceptual Propensities Although, of course, young infants do not understand the literal meaning of language addressed to them, it does appear that newborns begin life with attentional preferences for human, linguistic interaction and with a set of social behaviors that can elicit this stimulation. These abilities appear, because of their emergence so soon after birth, to be innately programmed and, as such, provide a great deal of economy in the task

after birth, to be innately programmed and, as such, provide a great deal of economy in the task of mastering language. Certain propensities present from the first days of life include a preference for sounds in the frequency range of the human voice (Hutt, Hutt, Lenard, Bernuth, & Jewerff, 1968), for speech over other rhythmic or musical sounds (Butterfield & Siperstein, 1974), and for child-directed over adult-directed speech (Fernald, 1983; Cooper & Aslin, 1994; Moon, Pennton-Cooper, &

over adult-directed speech (Fernald, 1983; Cooper & Aslin, 1994; Moon, Pennton-Cooper, & Fifer, 1993; Pegg, Werker, & McLeod, 1992). Newborns look for the source of a voice they hear, register pleasure with facial expression when they identify the source, and remain quiet, inhibiting their movements, until the voice ceases (Owens, 2000). They do not show this kind of recognition when a nonhuman auditory stimulus is heard. Three-day-old infants are able to recognize their own mothers’ voices, as

stimulus is heard. Three-day-old infants are able to recognize their own mothers’ voices, as opposed to the voices of other women (Hepper, Scott, & Shahidulla, 1993), probably as a result of prenatal experience with the mother’s voice heard through the amniotic sac (Jusczyk, 1999b). Newborns are also attracted to and prefer to look at faces (Kagan & Lewis, 1965). Parents, conveniently, interpret this preference as a sign of willingness to interact. The newborn appears, then, to be biologically

this preference as a sign of willingness to interact. The newborn appears, then, to be biologically organized to attract language input and tune in to the linguistic environment. There is evidence that speech perception begins at a very early age and may, in fact, be biologically determined in human infants (Eimas, 1975). For example, infants only weeks old are able to discriminate among a variety of speech sounds, including /pa/ versus /ba/, /ta/ versus /da/, /ba/ versus /ga/, to name a few

of speech sounds, including /pa/ versus /ba/, /ta/ versus /da/, /ba/ versus /ga/, to name a few (Aslin & Smith, 1988; Eimas, Siqueland, Jusczyk, & Vigorito, 1971; Graham, Bashir, & Stark, 1999), and make these distinctions along the same categorical boundaries as adults do. These distinctions are likely to be part of the human auditory system, as Werker and Tees (1984) found that infants in English-speaking environments were able to distinguish sounds that are not used in English, but are in

environments were able to distinguish sounds that are not used in English, but are in Hindi. By 1 year of age, though, this ability to discriminate sounds not heard in the native language had all but disappeared. These findings suggest that the infant does have some “built-in” capacity to make discriminations among sounds that are important in speech, but that this ability is modified with experience. Rather than learning to make these distinctions from the language that he or she hears,

experience. Rather than learning to make these distinctions from the language that he or she hears, though, it seems that the infant comes to the task of language with some discriminations “preset.” Depending on what particular distinctions are used by the ambient language, some of these innately programmed distinctions are maintained by the child’s experience, whereas others are extinguished. The acceleration of this process toward the end of the first year may also signal a shift in focus for

acceleration of this process toward the end of the first year may also signal a shift in focus for the language learner, from sound discrimination to the mapping of sound to meaning (Werker & Tees, 1999).

Children also acquire a range of differentiated responses to the sounds of language throughout their first year. By 4 months of age, they respond to different tones of voice; by 6 months, they show evidence of selective listening (choosing to respond to some sounds and ignore others). In the latter half of the first year, babies inhibit their behavior if told “no” in a loud, sharp voice, but they do the same if they hear “yes” spoken in the same tone (Spitz, 1957). Their response at this

they do the same if they hear “yes” spoken in the same tone (Spitz, 1957). Their response at this stage, then, is not to a specific lexical item, but to an emotional tone in the speech. Young babies also appear to be able to coordinate acoustic information about speech with visual information about oral posture. Kuhl and Meltzoff (1988) showed that infants looked for a significantly longer time at the picture of the face whose oral gesture corresponded to the vowel the 6-month-old babies were

at the picture of the face whose oral gesture corresponded to the vowel the 6-month-old babies were hearing at the time (retracted lips for /i/; open lips for /a/). This surprising finding suggests a very early ability to integrate visual and auditory cues in perceiving speech and would seem to provide children with an excellent foundation for learning the articulatory movements associated with the speech sounds they will eventually learn to produce. Although children do not understand words

the speech sounds they will eventually learn to produce. Although children do not understand words per se until near the end of the first year, they appear to begin to develop the bases for the grammatical and semantic categories, with which these words will be associated, much earlier. Infants are able to use acoustic and phonological cues to distinguish words based on grammatical class. Shi, Werker, and Morgan (1999) showed that infants presented with lists of lexical (content; e.g., dog,

Werker, and Morgan (1999) showed that infants presented with lists of lexical (content; e.g., dog, shoe) and grammatical (function; e.g., the) words could detect a switch to a word from a different category, although they were not sensitive to changes within the same grammatical category. Colombo and associates (Colombo, O’Brien, Mitchell, Roberts, & Horowitz, 1987) showed babies 6–7 months of age slides of various kinds of birds until the children habituated to these stimuli and reduced their

slides of various kinds of birds until the children habituated to these stimuli and reduced their visual fixation time. These researchers then showed two new slides simultaneously, one of a parakeet and one of a horse, for example. Babies reliably looked longer at the horse, suggesting that it was more novel to them than the parakeet, which they had also not seen before. Thus, it appears that the children included the parakeet in the category they had formed for the objects viewed previously

children included the parakeet in the category they had formed for the objects viewed previously (i.e., birds). These findings suggest that even at this early age, babies are able to organize their perceptions into conceptual categories that eventually can be mapped onto words. Infants also appear to have specialized abilities that facilitate the task of segmenting words from the ongoing stream of speech. Saffran, Aslin, and Newport (1996) showed that by 8 months of age, infants are able to

of speech. Saffran, Aslin, and Newport (1996) showed that by 8 months of age, infants are able to recognize word-like sound units from an ongoing acoustic field, based on expectations they have developed for the likelihood that certain sounds will appear together. Moreover, they accomplish this task, using nonsense syllables presented by examiners, after only 2 minutes of exposure. Jusczyk, Houston, and Newsome (1999) also reported that infants at 7–10 months of age can use stress patterns in a

and Newsome (1999) also reported that infants at 7–10 months of age can use stress patterns in a similar way to recognize word-like elements within an acoustic stream. When presented, for example, with a series of syllables that have a strong–weak syllable pattern (hamster), they show preferences for listening to new combinations that have the same pattern and are more likely to react to strong–weak patterns as if they were words, than to weak–strong patterns (giraffe). As they develop,

patterns as if they were words, than to weak–strong patterns (giraffe). As they develop, children acquire increasingly sophisticated means of locating word boundaries in fluent speech. By 11 months of age, children’s sensitivity to word boundaries depends on multiple sources of information, including the order of sounds in the word, the stress pattern in the word, and the way in which individual sounds are pronounced (Jusczyk, 1999a; Myers et al., 1996). This ability to use a variety of

sounds are pronounced (Jusczyk, 1999a; Myers et al., 1996). This ability to use a variety of acoustic cues to segment words from a speech stream by relying on probabilities of sound structure abstracted from a relatively small amount of listening experience helps to explain how children learn to pick out words from the many sounds they hear in their environments. Infants also appear to be sensitive to auditory information that is associated with syntactic boundaries. Hirsh-Pasek and associates

to auditory information that is associated with syntactic boundaries. Hirsh-Pasek and associates (Hirsh-Pasek et al., 1987) showed that babies of this age preferred to look toward a speaker that played sentences containing pauses at clause or phrase boundaries (Cinderella lived in a great big house/but it was sort of dark/ because she had a mean . . . ), as opposed to sentences with pauses in the middle of a clause (Cinderella lived in a great big house but it was/ sort of dark because she

the middle of a clause (Cinderella lived in a great big house but it was/ sort of dark because she had/a mean . . . ). These results suggest that babies as young as 7 months can detect syntactic boundaries, an ability that would greatly economize the amount of information they ultimately need to acquire in order to understand sentences. Recent studies (Kuhl, Coffey-Corina, Padden, & Dawson, 2005; Tsao, Liu, & Kuhl, 2004; Werner, Dawson, Osterling, & Dino, 2000) have shown that these

2005; Tsao, Liu, & Kuhl, 2004; Werner, Dawson, Osterling, & Dino, 2000) have shown that these early-developing speech perception capacities, and particularly the ability to “tune in” to sounds that are relevant for learning the ambient language, are related to outcomes in vocabulary size and sentence complexity at age 2.

Perceptual Capacity in Infants with ASD What about children with ASD? Do they demonstrate the early perceptual capacities that help them “tune in” to the relevant stimuli in the ambient language and use this experience to break into the language code? It seems reasonable to hypothesize that one source of the pervasive difficulty in language learning evidenced by children with ASD may be a reduced amount of relevant language experience caused by diminished attention to and preference for native

amount of relevant language experience caused by diminished attention to and preference for native language sound patterns during infancy. Many parents of children with ASD report that these babies sometimes seemed deaf and did not respond to voices or their names, and retrospective studies of videotapes of infants who turn out to have ASD support the observations that these children show poorer responses to their own names than do peers (Osterling & Dawson, 1994; Werner et al., 2000). Although

to their own names than do peers (Osterling & Dawson, 1994; Werner et al., 2000). Although few studies have investigated early auditory perception in infants who turn out to have autism, one case study (Dawson, Osterling, Meltzoff, & Kuhl, 2000) found some difficulty in the ability to discriminate consonants, though not vowels, at the end of the first year of life in a child found later to have ASD. Data on toddlers with ASD also suggest that there is a reduced preference for child-directed

ASD. Data on toddlers with ASD also suggest that there is a reduced preference for child-directed speech, and that this reduction is related to measures of understanding language (Paul, Chawarska, Klin, & Volkmar, 2007), as well as to measures of understanding language a year later (Paul, Chawarska, Fowler, Cicchetti, & Volkmar, 2007). Older children with autism have also been shown to have a reduced preference for child-directed speech (Klin, 1992). Just as studies of visual preferences show a

preference for child-directed speech (Klin, 1992). Just as studies of visual preferences show a reduced preference for social stimuli in young children with autism (Klin, 2003), these early studies suggest something analogous may be going on in the auditory realm, and these failures to orient to important visual and auditory information in the first year of life could have cascading consequences for later development.

Infant Sound Production Crying is the newborn’s principal form of vocal behavior. Beginning in the first month after birth, the infant masters the ability to produce cries that differentiate among affective states. Pain versus hunger cries are differentiated within the first week of life (Graham et al., 1983). Other noncry vocalizations also emerge early in life. Contentment vocalizations can be distinguished from distress sounds in typically developing children within the first month (Ricks &

distinguished from distress sounds in typically developing children within the first month (Ricks & Wing, 1975). The quality of infant vocalizations changes drastically throughout the first year of life. Stark (1979) has presented a framework for describing infant vocal behavior, which appears in Table 4.1. According to this framework, the infant from birth to 2 months of age produces primarily reflexive cries and other vegetative sounds. Although the newborn’s cries have a profound effect on

reflexive cries and other vegetative sounds. Although the newborn’s cries have a profound effect on the adults who hear them, the infant is not using the crying in any intentional way to attract the adults’ notice. Rather, the cry is an instinctual response to an internal state such as hunger, cold, or boredom. Vegetative sounds such as burps, coughs, and sneezes are also reflexive, but adults respond to these noises as if they were communicative, as well. This willingness on the part of an

respond to these noises as if they were communicative, as well. This willingness on the part of an adult to attribute intentionality to the infant’s early reflexive sound production may be one of the ways in which infants are “taught” to use sound to communicate. As the baby grows, the head and neck anatomy changes, resulting in a greater diversity of sounds that can be produced and a more speech-like resonance associated with vocalization. Between 2 and 5 months of age, babies begin two

speech-like resonance associated with vocalization. Between 2 and 5 months of age, babies begin two behaviors that are important for the development of speech and communication. One is the pleasant, somewhat speech-like sound that babies produce primarily in response to social interactions, known as cooing, or “comfort” sounds. The name arises from the “oo”-like quality of most of the vowels heard during this type of vocalizing and from the fact that most of the consonants produced sound like

during this type of vocalizing and from the fact that most of the consonants produced sound like /k/ and /g/. Again, the reasons for the “coo” quality of these vocalizations are anatomic. As the baby lies in a prone or semiprone position, gravity operates most strongly on the relatively large posterior portion of the tongue, pulling it back toward the roof of the mouth. This oral posture produces the consonants we recognize as /g/ and /k/, as well as the vowel we recognize as “oo.” A second new

the consonants we recognize as /g/ and /k/, as well as the vowel we recognize as “oo.” A second new vocal behavior in this stage is the infant’s laugh, which emerges at about the same time as cooing. Usually accompanied by a social smile, infant laughing is produced in response to an interaction the infant perceives as pleasurable, very often because it is a known routine whose components are predictable. Thus, a baby may laugh when the mother plays “peek-a-boo” for him or her or when she

predictable. Thus, a baby may laugh when the mother plays “peek-a-boo” for him or her or when she assumes a posture as if ready to tickle the baby. Crying becomes less frequent during this period of increasingly diverse and speech-like vocalization.

| Stage | Age range   | Vocalization types                  | |-------|-------------|-------------------------------------| | I     | 0–2 months  | Reflexive cries and vegetative sounds | | II    | 2–5 months  | Cooing and laughing                 | | III   | 4–8 months  | Vocal play and beginning babbling   | | IV    | 6–9 months  | Reduplicated babbling               | | V     | 9–18 months | Jargon babbling                     |  The next stage of vocal development begins at about 4 months

Jargon babbling                     |  The next stage of vocal development begins at about 4 months of age and extends to about 8 months. Stark refers to this period as “vocal play.” In this phase the infant begins to pronounce what sound like single syllables with vowel-like and consonant-like components. Although not approximations of words and not meant to convey any referential meaning, these early forms of babbling continue the infant’s progress toward increasingly speech-like sounds. The

early forms of babbling continue the infant’s progress toward increasingly speech-like sounds. The consonants produced tend to be made more toward the front of the mouth than were those used for cooing, including sounds such as /b/, /p/, and /m/. At the next stage, infants use vocal play as a means of responding to or initiating contact with adults, so that proto-“conversations” can take place in which parent and infant babble back and forth to each other. Babies also engage in vocal play when

which parent and infant babble back and forth to each other. Babies also engage in vocal play when alone, and this play may function as a means for the infant to “practice” the new sounds. There is also evidence that vocal learning begins to be shaped in the middle of the first year by imitation of sound patterns in the ambient language. Kuhl and Meltzoff (1996) presented audio and video recordings of three vowel sounds to infants at 12 and 20 weeks and analyzed their vocalizations. By 20

of three vowel sounds to infants at 12 and 20 weeks and analyzed their vocalizations. By 20 weeks, infants were able to imitate specific vowels with appropriate relative format frequencies. Moreover, Kuhl and Meltzoff (1996) showed that providing infants with enhanced opportunities to imitate sounds increased their production of speech-like vocalizations. In general, vocal imitation appears to be an important means by which typically developing children move toward speech. Infants begin

to be an important means by which typically developing children move toward speech. Infants begin attempting to imitate others’ productions in back-and-forth babbling games during the vocal play period and continue to use imitation, first of sounds and intonation contours, and later of words, throughout the second year of life. Stark (1979) reported that a new form of vocal behavior, which she referred to as “reduplicated babbling,” appears in the second half of the first year of life. This

referred to as “reduplicated babbling,” appears in the second half of the first year of life. This type of vocalization includes consonant–vowel combinations, such as /bababa/ or /nanana/, in which the same syllable is repeated over and over. Consonants most likely to appear include /b/, /p/, /t/, /d/, /m/, /n/, and the glide y. Like vocal play, reduplicated babbling occurs both when the baby is alone and as a form of interaction. Oller and associates (Oller, Eilers, Neal, & Cobo-Lewis, 1998)

alone and as a form of interaction. Oller and associates (Oller, Eilers, Neal, & Cobo-Lewis, 1998) report that this form of vocalization, which they refer to as “canonical babble,” is an important milestone of communication development. Their research suggests that children who do not develop canonical babbling by 10 months of age are at risk for later language disorders. Toward the end of the first year of life, many babies begin to use “vocables,” or phonetically consistent forms. These are

year of life, many babies begin to use “vocables,” or phonetically consistent forms. These are productions that are unique to the child in that they do not closely resemble any adult word, but are used reliably in certain situations. For example, Carter (1979) reported that one child consistently used an /m/ sound along with reaching to indicate that he wanted something. These early consistent forms are sometimes referred to as “protowords.”

Preverbal Production in Infants with ASD Again, there is a paucity of direct data on the development of vocal productions of infants who go on to have ASD. Most of the literature on vocalization in ASD describes vocal production in children who remain at prelinguistic levels of communication into the preschool years, rather than in children during the first year of life. Ricks and Wing (1975), for example, showed that adults had trouble distinguishing the meaning of the cries of their

for example, showed that adults had trouble distinguishing the meaning of the cries of their preverbal preschoolers with ASD, although they could correctly interpret typical children’s cries. Wetherby, Yonclas, and Bryan (1989), in a study of three prelinguistic preschoolers with ASD, found few well-formed syllables and many atypical vocalizations, such as growling and tongue clicking. Sheinkopf, Mundy, Oller, and Steffens (2000) reported on a group of preschool age-children with language

Mundy, Oller, and Steffens (2000) reported on a group of preschool age-children with language levels at 15 months and found a similar rate of production of atypical sounds, although they did find that well-formed syllables were also produced. Wetherby et al. (2004) reported that atypical intonation in prelinguistic vocalizations was a significant discriminator of toddlers with ASD from those with either typical development or other developmental disabilities. Heilmann, Ullstadius, Dahlgren, and

either typical development or other developmental disabilities. Heilmann, Ullstadius, Dahlgren, and Gillberg (1992) showed that preschoolers with ASD were less likely than peers matched for mental age to imitate adult vocal productions. Similarly, Rogers, Hepburn, Stackhouse, and Wehner (2003) found that 2-year-olds with autism were significantly more impaired in overall imitation abilities, as well as in oral–facial imitation, as compared with age mates with other developmental disabilities.

well as in oral–facial imitation, as compared with age mates with other developmental disabilities. Thus, although echolalia is a behavior commonly attributed to speakers with ASD, at the very early stages of communication, when echoing is a typical and useful strategy for learning speech, children with ASD are less likely than other toddlers to copy the speech they hear. Despite the suggestions of the findings cited here, the trajectory of early vocal development from the first weeks to the

of the findings cited here, the trajectory of early vocal development from the first weeks to the end of the first year of life has not yet been studied in infants who go on the show ASD.

Prelinguistic Interaction and Communication Infants’ early vocalizations appear to constitute proto-conversations with parents (Bateson, 1975). Other early forms of interaction include making eye contact with the parents (at about 1 month of age), smiling and laughing in response to speech (at 2 months), and vocalizing in response to sounds (at 4 months). These very early patterns of back-and-forth activity lay the basis for many later developing forms of reciprocity, including participation

activity lay the basis for many later developing forms of reciprocity, including participation in interactive games, such as “pat-a-cake,” and eventually in turn taking in conversation. Babies may also begin to imitate some of the parent’s intonation patterns (Trevarthen, 1979), and by 3 months of age show more vocal responsiveness to their mothers than to other adults. As a baby gains better motor coordination, more formal interactions occur, such as pat-a-cake or peek-a-boo games, waving

motor coordination, more formal interactions occur, such as pat-a-cake or peek-a-boo games, waving bye-bye, or “following” conversations by looking first at one person and then another. Babies use gaze extensively to regulate interactions. They look at the parent when they are interested in interacting and avert their gaze when they become tired or overstimulated (Stern, 1977). Likewise, babies are sensitive to changes in parental gaze during interactions. Infants as young as 14 weeks smile

are sensitive to changes in parental gaze during interactions. Infants as young as 14 weeks smile significantly more when an adult’s gaze is directed toward them than during periods of averted gaze (Hains & Muir, 1996). It seems likely that, from very early on, typically developing babies are sensitive to gaze as a signal of initiation and termination of social interaction. Babies can also follow their parents’ gaze to attend to an object they look and/or point at, and appear to do so reliably

their parents’ gaze to attend to an object they look and/or point at, and appear to do so reliably by 1 year of age (Moore & Corkum, 1998; Morissette, Ricard, & Decarie, 1995). They also begin to direct the parents’ attention by looking at objects themselves. Parents then follow the infant’s line of regard and look at what the baby looks at. Frequently, parents comment on this object of the baby’s gaze. These interactions, in which the parent and child share focus on an object, have been called

gaze. These interactions, in which the parent and child share focus on an object, have been called “joint attention routines” (Bruner, 1977) and are thought to be very important in laying the foundation for the basic topic–comment structure of language in which one speaker directs the other’s attention to a focus of interest, on which the conversation then elaborates. Several studies (e.g., Baldwin, 1995; Brookes & Meltzoff, 2005) have shown that infants’ ability to engage in joint attention is

1995; Brookes & Meltzoff, 2005) have shown that infants’ ability to engage in joint attention is related to their later language development. At about 8 months of age, babies begin to develop the representational and intentional skills that allow them to hold goals in mind long enough to pursue them through action. Cognitive development at this time also supports the ability to understand actions as a means to an end, and babies begin to use communication as a means to the outcomes—in gaining

as a means to an end, and babies begin to use communication as a means to the outcomes—in gaining parental attention or the acquisition of objects—that they desire. Such communicative acts generally become manifest at the same time other forms of intentional behavior emerge—about 8–10 months of age. Communication at this stage is expressed primarily with gestures, such as holding an object up for the mother to view, or pointing. Acredolo and Goodwyn (1988) reported that the communicative use of

the mother to view, or pointing. Acredolo and Goodwyn (1988) reported that the communicative use of symbolic gestures, often invented by the child, is quite common during the last half of the first year of life. They found that some children as young as 11 months of age used relatively stable gestures that resembled manual signs to stand for objects or actions for the purpose of communication, without having been taught any gestural system. For example, a child may bounce up and down to

without having been taught any gestural system. For example, a child may bounce up and down to indicate “rabbit” or press on the eyes to indicate “sun.” Often these gestures are accompanied by a look at the parent to see that he or she is attending. Capone and McGregor (2004) report that early use of gestures is a significant predictor of language acquisition in both typical and atypical development. Bates (1976) categorized early intentional behaviors into two broad types based on their

Bates (1976) categorized early intentional behaviors into two broad types based on their communicative function: protoimperatives and protodeclaratives. Protoimperative speech acts are those in which the child attempts to get the listener to do something for him or her, or to stop doing something, and appear to evolve into linguistic imperatives or commands. Protoimperative speech acts include requests for objects, which the child can indicate by pointing or reaching. Requests for actions,

requests for objects, which the child can indicate by pointing or reaching. Requests for actions, which the child can convey by miming some part of a familiar ritual, also fall into this category. For example, a child may climb on the mother’s lap and touch his nose to indicate that he wants his mother to play the “body-part-naming game” that is frequently a part of interactive routines at this stage. Protests or rejections also occur, in which the child communicates, by pushing away or turning

Protests or rejections also occur, in which the child communicates, by pushing away or turning away, the desire to turn down some object or activity the mother is attempting to offer. Protodeclarative speech acts direct the mother’s attention to an object of the child’s interest; the child points to it, holds it up, shows, or gives it to accomplish this act. These acts are thought to lay the basis for the later use of referential language. Protodeclarative speech acts are thought to evolve out

for the later use of referential language. Protodeclarative speech acts are thought to evolve out of the earlier-established joint attentional routines that appear to be very important for later language development. As babies begin to evidence intentional communication, parents “up the ante” (Bruner & Garton, 1978), requiring a more sophisticated form of response in order for it to “count” as the child’s turn. Whereas we saw earlier that parents accepted any child behavior, such as a burp or a

child’s turn. Whereas we saw earlier that parents accepted any child behavior, such as a burp or a cough, as a communicative act, when true intentionality does develop, they begin to require the child to do something more intentional in order to fulfill a turn. The child is now expected to imitate the parent, produce a conventional gesture, and eventually to vocalize. In this way, the baby’s communication is “shaped” into language.

Prelinguistic Communication in Infants with ASD Studies of early communication in children with ASD reveal that their rates of communicative expression are lower and that they are less likely to engage people visually or direct their acts to the communication partners with gaze (Stone, Ounsley, Yoder, Hogan, & Hepburn, 1997; Wetherby, Cain, Yonclas, & Walker, 1988). A failure to develop the ability to follow others’ gaze and to use gaze to direct others and share attention to objects is one of

to follow others’ gaze and to use gaze to direct others and share attention to objects is one of the most frequent findings in studies of young children with ASD (Stone et al., 1997; Wetherby et al., 2004; see Mundy & Burnette, 2005, for review), and these joint attention behaviors have been found to have a strong predictive relationship to language development in children with ASD (Charman, Drew, Baird, & Baird, 2003; Rogers et al., 2003; Sigman & Ruskin, 1999; Wetherby et al., 2004), as they

Baird, & Baird, 2003; Rogers et al., 2003; Sigman & Ruskin, 1999; Wetherby et al., 2004), as they do in children with typical development. Studies of early gestural expression in young children with ASD show this to be another area of significant difference. Toddlers with ASD have been shown to fail either to respond to communicative gestures of others, or to use conventional gestures, especially pointing, as a means of communication. These children often employ gestures that appear to use

pointing, as a means of communication. These children often employ gestures that appear to use another as a tool, such as grabbing an adult’s hand and moving it toward a desired object, and fail to pair these gestures with gaze directed to the adult. However, 2-year-olds with ASD were not shown to differ from peers with intellectual disability in their production of reaching, giving, or touching objects (Stone et al., 1997). When they do communicate, children with ASD have been shown in several

(Stone et al., 1997). When they do communicate, children with ASD have been shown in several studies (Curcio, 1978; Dawson, Meltzoff, Osterling, Rinaldi, & Brown, 1998; Mundy, Sigman, & Kasari, 1994; Sigman, Mundy, Sherman, & Ungerer, 1986; Wetherby et al., 2004) to be able to express wants and needs with a variety of means, including their atypical gestures, with a frequency similar to that seen in typical peers. However, their communicative acts are disproportionately proto-imperative.

seen in typical peers. However, their communicative acts are disproportionately proto-imperative. Children with ASD frequently request objects and actions, as well as reject and protest proffered objects and activities. They differ from children with typical development, however, in producing a greatly reduced frequency of the proto-declarative acts that emerge from early joint attentional interactions. Thus, delays in the development of language that are so common in young children with ASD

Thus, delays in the development of language that are so common in young children with ASD are forecast by significant deficits in the development of prelinguistic communication skills that allow typical children to make the transition to conventional language.

UNDERSTANDING LANGUAGE Although parents often act as if they believe their child understands language almost from the first day of life, true lexical comprehension does not emerge until somewhat later. By 6 months, typically developing children respond to their names and to “no” (Spitz, 1957). By 8 months, a few words associated with games such as “pat-a-cake” or “so big” are recognized. Infants gradually become more active responders to these routines (Bruner, 1977). This early comprehension

gradually become more active responders to these routines (Bruner, 1977). This early comprehension is contextually bound, however. If the baby is used to playing pat-a-cake on the changing table but is told to clap hands in the bathtub, the child will probably not comply. By 12 months, merely saying the words (“Let’s play pat-a-cake!” or “Show me your nose”) often elicits a spontaneous action from the child such as clapping or touching the nose (Chapman, 2000). At this age, children also show

the child such as clapping or touching the nose (Chapman, 2000). At this age, children also show clear evidence of understanding some words or even simple phrases, responding appropriately to specific words outside the context of routine games (Huttenlocher, 1974; Tomasello & Kruger, 1992). Parents often believe that their toddlers understand everything they hear; however, studies of early language comprehension in highly structured settings have suggested that young children do not understand

comprehension in highly structured settings have suggested that young children do not understand many more words than they are able to say (Bloom, 1993; Chapman, 2000). When parents are asked to report the kinds of words and instructions that their young children are able to understand, they typically give much higher estimates than is observed during formal testing. Using a standard questionnaire (Fenson et al., 1993), parents estimated that their 8-month-olds understood an average of 6

(Fenson et al., 1993), parents estimated that their 8-month-olds understood an average of 6 phrases and about 20 words, increasing to an average of 23 phrases and 169 words by 16 months. Comprehension in ordinary situations may be achieved by a variety of nonlinguistic strategies that allow children to respond to what their parents say, when in fact they are responding to what their parents do or what they know about the way things usually happen. Chapman (1978) pointed out that this

do or what they know about the way things usually happen. Chapman (1978) pointed out that this contextually bound comprehension often leads parents to believe that babies at 8–12 months understand much more of language than they actually do. Chapman described a set of strategies for comprehension that are frequently used by infants of this age to comply with parental requests and that give the parent the impression the child is actually understanding language. These are summarized in Table 4.2.

the impression the child is actually understanding language. These are summarized in Table 4.2. Few parents truly test their children’s language comprehension by asking them to do things completely out of context (e.g., asking a child to go get Mommy’s keys from the bedroom during a family meal), and this “conspiracy” between the parent, who asks the child to do things he or she was likely to do anyway, and the child, who marshals information from several sources in order to interact

to do anyway, and the child, who marshals information from several sources in order to interact cooperatively with the parent, results in children’s having many opportunities to hear words that match the actions they are performing—and thus to learn more language—as well as to engage in social interactions that are rewarding for both parties. Children in the second year of life do acquire knowledge of a large number of word meanings, with the average receptive vocabulary size at 50 words by 15

of a large number of word meanings, with the average receptive vocabulary size at 50 words by 15 months, and in the hundreds by the second birthday (Fenson et al., 1993). Ability to understand word combinations is limited to one or two words per utterance, but the strategies outlined above allow the child to engage successfully with adults who choose their instructions judiciously to match the child’s predilections.

Language Comprehension in ASD One of the most frequently reported early signs of ASD in the first year of life is a reduced tendency to respond to others’ speech, particularly to the child’s own name, and this observation is consistent in the second and third years as well (Lord, 1995; Osterling & Dawson, 1994). Gosse, Paul, and Chawarska (2006) reported that 2-year-olds with ASD differed from peers with typical or delayed development in the number of words and phrases parents reported they

peers with typical or delayed development in the number of words and phrases parents reported they understood; however, they differed significantly from mental-age (MA)-matched children with other developmental disorders only in the ability to respond to common phrases, such as “come here.” These findings suggest that toddlers with ASD may be as able as mental-age mates to form associations between objects and their verbal labels, but are less able than children without ASD to make the

between objects and their verbal labels, but are less able than children without ASD to make the contextually appropriate responses that children with typical development use as strategies to “fool” parents into believing they have high levels of understanding. In fact, formal testing of children with ASD at this age finds scores on language comprehension that were as low as those seen in expressive language (DiLavore, Lord, & Rutter, 1995; Paul, Chawarska, Klin, et al., 2007), both of which

language (DiLavore, Lord, & Rutter, 1995; Paul, Chawarska, Klin, et al., 2007), both of which are significantly delayed relative to both chronological and mental age. Moreover, an aberrant pattern of higher expressive than receptive test performance was seen in some toddlers with ASD, a pattern very rarely observed in children with typical development or in those with other developmental disabilities (Paul, Chawarska, Klin, et al., 2007). Part of the reason for this finding may be that these

(Paul, Chawarska, Klin, et al., 2007). Part of the reason for this finding may be that these children showed a reduced tendency, relative to same-age peers, to attend to child-directed speech when tested in a laboratory situation (Nadig, Ozonoff, Singh, Young, & Rogers, 2006; Paul, Chawarska, Fowler, et al., 2007). Thus, toddlers with ASD may be less inherently interested in speech than are typical peers, spend less time actively listening to it, and thus have less experience with making sense

peers, spend less time actively listening to it, and thus have less experience with making sense of speech in the context of ongoing events. This reduction in experience may be one of the reasons for the slow growth of receptive vocabulary seen in these children, which in turn may help to account for the protracted course of language development typical of this population, even in children with relatively strong nonverbal cognition.

| Age          | Comprehension ability                                                     | Comprehension strategy                                              | Example                                                                                                                                 |

|--------------|---------------------------------------------------------------------------|---------------------------------------------------------------------|-----------------------------------------------------------------------------------------------------------------------------------------|

| 8–12 months  | Understands a few single words in routine contexts                          | • Looks at objects mother looks at<br>• Acts on objects noticed<br>• Imitates ongoing action | • Baby looks at ball Mom is looking at when she says, “Get the ball! Throw it to Mommy!”<br>• Baby moves toward ball Mom is looking at.<br>• Baby imitates Mom’s gesture for throwing ball. |

| 12–18 months | Understands single words outside of routine but still requires some contextual support | • Locates objects mentioned<br>• Gives evidence of notice<br>• Does what you usually do | • Baby finds ball among toys on floor when she says, “Get the ball! Throw it to Mommy!”<br>• Baby picks up ball.<br>• Baby throws ball.           |

| 18–24 months | Understands words for absent objects, some two-term combinations          | • Puts objects in containers, on surfaces<br>• Acts on objects in the way mentioned (child as agent) | • Baby puts ball in cup when Mom says, “Put the ball in the cup!”<br>• Baby pushes ball when Mom says, “Make the dolly push the ball!”      |

*Note. Data from Chapman (1978).*  FIRST WORDS The conventional use of language begins at about 12 months in typical development, when toddlers usually say their first recognizable words. This development is closely related to the acquisition of the consonant sounds used in a language (Stoel-Gammon, 2003). Research in the area of sound development has shown that between 12 and 24 months of age, typical children produce most of the consonant sounds of their language and are beginning to produce

children produce most of the consonant sounds of their language and are beginning to produce a range of syllable structures to support the production of words (Stoel-Gammon, 2002). Typical children say their first words at 12–15 months of age. During the 12- to 18-month period, there is a gradual increase in both receptive and expressive vocabulary. The words children learn in this period name objects and people, usually those on which the child acts (e.g., daddy, mommy, cookie, ball) and

objects and people, usually those on which the child acts (e.g., daddy, mommy, cookie, ball) and describe relationships between objects (e.g., all gone, more) (Fenson et al., 1993). Children also learn social words to be used in rituals such as greetings. Much like early gestures, first words are often used to express ideas such as appearance (“Uh-oh”), disappearance (“All gone”) and recurrence (“More”), related to the child’s developing notions of object permanence (Bloom & Lahey, 1978; Gopnik

related to the child’s developing notions of object permanence (Bloom & Lahey, 1978; Gopnik & Meltzoff, 1987). By the age of 18 months, expressive vocabulary size typically reaches an average of about 50–100 words (Fenson et al., 1994; Nelson, 1973) and the “word explosion” begins. This period may be punctuated by many requests from children for adults to label things in the world around them, and words are now learned very quickly, often after only a single exposure without any explicit

and words are now learned very quickly, often after only a single exposure without any explicit instruction. This stage marks an important turning point, as children are no longer learning via association; instead, they understand the referential nature of words (Nazzi & Bertoncini, 2003) and are able now to use words to get new information about the world (Halliday, 1975). By 16–19 months infants are able to use nonverbal cues, such as an adult’s eye gaze, to make quite fine distinctions

are able to use nonverbal cues, such as an adult’s eye gaze, to make quite fine distinctions between an object that an adult is naming and another object that happens to be present (Baldwin, 1991; Fernald, Marchman, Hurtado, & Zangl, 2006), suggesting that they can now understand the intentions of others within language contexts. Similar findings for learning words to describe actions have been reported for 2-year-olds (Tomasello & Kruger, 1992). Between 18 and 24 months, typical children begin

for 2-year-olds (Tomasello & Kruger, 1992). Between 18 and 24 months, typical children begin combining words to form two-word “telegraphic” utterances (Brown, 1973) encoding a small set of meanings. Children talk about objects by naming them and by discussing their locations or attributes, who owns them, and who is doing things to them. They also talk about other people, their actions, their locations, their own actions on objects, and so forth. Objects, people, actions, and their

their locations, their own actions on objects, and so forth. Objects, people, actions, and their interrelationships preoccupy the typically developing young child. Thus, early language development, from gestures to single words to beginning sentences, is in many ways a remarkably organized process that reflects both how young children think about the world (e.g., recognition of the coming and going of things and people) and what is important to them (e.g., things that they can act on,

and going of things and people) and what is important to them (e.g., things that they can act on, interesting events such as going outside or wiping up a spill). Individual differences exist among typically developing children, but language development follows a generally consistent pattern, with forms being acquired and put to use in order interact more elaborately with others.

Early Language in Children with ASD Children with ASD, as we have seen, produce fewer vocalizations and do less vocal imitation than peers with typical development. They also produce a narrower range of consonant sounds than their age mates (Schoen, Paul, Chawarska, Klin, & Volkmar, 2004). Given the close relationship between sound and word production in early language development, it should not be surprising that children with ASD, who have fewer sounds available to them, produce fewer words

be surprising that children with ASD, who have fewer sounds available to them, produce fewer words than typically developing peers. Parents’ most pressing concerns in the second year of life for children with ASD are typically in the area of speech. Acquisition of first words is usually delayed. Paul, Chawarska, Klin, et al. (2007), for example, reported that 36% of children with ASD over the age of 2 still had no expressive language. Parents may also become concerned at this time because the

of 2 still had no expressive language. Parents may also become concerned at this time because the child has learned a few words but has never gone farther, or has lost the early words acquired. About 20% of children who are later included on the autism spectrum are reported to experience a regression in skills, usually a loss of the ability to say words, during their second year (Chawarska et al., 2007; Hoshino et al., 1987; Kobayashi, 1993; Kurita, 1985; Lord, Shulman, & DiLavore, 2004; Rogers

2007; Hoshino et al., 1987; Kobayashi, 1993; Kurita, 1985; Lord, Shulman, & DiLavore, 2004; Rogers & DiLalla, 1990; Tuchman & Rapin, 1997). Even when children begin acquiring words, expressive vocabulary size tends to lag about 6 months behind nonverbal mental age for toddlers on the ASD spectrum with both average and delayed nonverbal cognitive development (Paul, Chawarska, Klin, et al., 2007). Children with ASD are also delayed in making the transition from single words to multiword speech.

Children with ASD are also delayed in making the transition from single words to multiword speech. Paul, Chawarska, Klin, et al. (2007) reported that even children who had begun using single words and who had, on average, more than 100 words in their expressive vocabularies, were not routinely combining words by 28 months of age, even though typically developing children with this expressive vocabulary size do use multiword utterances (Fenson et al., 1993). Children in this sample who were not

size do use multiword utterances (Fenson et al., 1993). Children in this sample who were not speaking at age 2 but had acquired some speech by age 4 were just beginning to combine words in their utterances at the latter age. Moreover, throughout the second and third years of life, children with ASD continued to show the deficits in use of gaze, imitation, joint attention, conventional gestures, attention to speech and faces, and interest in sharing interests and feelings that characterized

attention to speech and faces, and interest in sharing interests and feelings that characterized their earlier development (see Chawarska & Volkmar, 2005, and Mundy & Burnette, 2005, for reviews). Although some children do make significant progress in language during this period, acquiring a large number of words and scoring within their mental-age-appropriate range on expressive and receptive language testing ( Paul, Chawarska, Klin, et al., 2007), their communication remains problematic. They

testing ( Paul, Chawarska, Klin, et al., 2007), their communication remains problematic. They use echolalia excessively, their speech is often self-directed, repetitive, and without communicative function, oddities of prosody may begin to appear, and the content of their language is impoverished and insufficient to sustain age-appropriate conversation or play (Tager-Flusberg, Paul, & Lord, 2005). Although the achievement of functional language use continues to be associated with better outcomes

Although the achievement of functional language use continues to be associated with better outcomes for children with ASD (Howlin, Goode, Hutton, & Rutter, 2004), and a larger proportion of children than previously reported are currently acquiring some language during the preschool period (Paul, Chawarska, Klin, et al., 2007; Rogers, 2006) perhaps as a response to earlier identification and intervention, the acquisition of spoken language does not erase the more fundamental deficits in

intervention, the acquisition of spoken language does not erase the more fundamental deficits in communication that characterize the autism spectrum.

ASSESSING EARLY COMMUNICATION IN ASD As we have seen, communicative behaviors are significantly impaired in very young children with ASD. At the prelinguistic level of communication, impairments are prominent in the following areas:
*   Depressed rate of preverbal communicative acts (Wetherby, Prizant, & Hutchinson, 1998; Wetherby et al., 2004).
*   Delayed development of pointing gestures, in terms of both use and responsiveness (Dawson et al., 1998).

*   Use of nonconventional means of communicating, such as pulling a person by the hand instead of pointing or looking (Stone et al., 1997).
*   Reduced responsiveness to speech and to (children’s) hearing their names called (Mundy & Stella, 2000; Nadig et al., 2006; Osterling & Dawson, 1994; Paul, Chawarska, Fowler, et al., 2007).

*   Restricted range of communicative behaviors, limited primarily to regulatory functions (getting people to do or not do things), with very limited use of communication for social interaction or to comment or establish joint attention (Mundy & Stella, 2000; Wetherby et al., 2004).

*   Atypical preverbal vocalizations (Sheinkopf et al., 2000). *   Deficits in pretend and imaginative play (Rogers, 2005). *   Limited ability to imitate (Heilmann et al., 1992; Rogers et al., 2003). In order to identify patterns of communication consistent with a diagnosis of ASD in children under 3, assessment at this stage focuses on these areas. Standard early communication assessments can be used to, first, substantiate the presence of a significant delay in communication development.

be used to, first, substantiate the presence of a significant delay in communication development. Both direct observation and parent report measures are valuable at this stage, inasmuch as very young children may not be able to demonstrate their full repertoires of behaviors in a brief, unfamiliar setting. As a result, parent report measures provide an important check on the observations made during the clinical evaluation. Instruments like those listed in Table 4.3 can be used for this phase

the clinical evaluation. Instruments like those listed in Table 4.3 can be used for this phase of assessment. Following the establishment of a significant delay by means of standard measures like those shown in Table 4.3, the communication evaluation of infants and toddlers suspected of ASD can focus more sharply on the areas known to be particularly impaired in these syndromes. These areas, as we have discussed, include rate of communication (verbal or nonverbal), use of communicative gaze and

have discussed, include rate of communication (verbal or nonverbal), use of communicative gaze and gestures, quality of vocalization, responsiveness to speech and gestures, range of communicative functions expressed (whether restricted to regulatory functions or including social interaction and joint attentional functions), and use of play schemes. Although standard assessments can be used to demonstrate a significant delay in communicative functioning, they do not provide the information

demonstrate a significant delay in communicative functioning, they do not provide the information necessary to differentiate children with ASD from children with other kinds of developmental difficulties. To make this distinction, it is necessary to employ naturalistic interactions that maximize the child’s opportunity for demonstrating his or her most typical interaction style, and that tap the aspects of social interaction that are most likely to be impaired in ASD. Several instruments have

aspects of social interaction that are most likely to be impaired in ASD. Several instruments have been developed to structure play-like interactions that allow the sampling and assessment of these preverbal communicative behaviors. These instruments include:

*   Communication and Symbolic Behavior Scales (CSBS; Wetherby & Prizant, 2003).
*   Early Scale of Communication and Socialization (Mundy et al., 2003). *   Communication Intention Inventory (Paul, 2007). *   Prelinguistic Communication Assessment (Stone, 1997). *   Autism Diagnostic Observation Schedule–Generic, Module 1 (Lord et al., 2000).

These scales use a variety of techniques, such as communicative “temptations,” to elicit the target behaviors, then compare the rate of production of these behaviors in children with suspected autism to the rates seen in similar elicitation conditions with typically developing children. By observing a child in these structured play settings and noting the child’s responses to the proffered activities, an evaluator can discern the communicative patterns that are typical of children with autism.

| Assessment instrument                                       | Age range    | Area(s) assessed                                          | Assessment method                      |
|-------------------------------------------------------------|--------------|-----------------------------------------------------------|----------------------------------------|

| Clinical Linguistic and Auditory Milestone Scale (Capute et al., 1986) | 0–36 months  | Expressive/receptive language                             | Observational scale                    |
| Communicative Development Inventory–III (Fenson et al., 2006) | 8–36 months  | Expressive/receptive vocabulary, gestures, play, early sentences | Parent report                          |

| Early Language Milestone Scale (Coplan, 1993)                | 0–36 months  | Expressive/receptive language                             | Pass/fail screening                    |
| Initial Communication Processes Scale (Schery & Wilcoxen, 1982) | 0–36 months  | Preverbal and verbal communication                        | Observational scale                    |

| Language Development Survey (Rescorla, 1989)                 | 12–36 months | Expressive vocabulary                                     | Parent report                          |
| Mullen Scales of Early Learning                              | 0–5 years    | Expressive/receptive language                             | Standardized test                      |

| Preschool Language Scale–4 (Zimmerman et al., 2002)          | 0–7 years    | Expressive/receptive language                             | Standardized test                      |
| Receptive-Expressive Emergent Language Scale (Bzoch, League, & Brown, 2003) | 0–36 months  | Expressive/receptive language                             | Parent report                          |

| Reynell Developmental Language Scale (Reynell & Gruber, 1990) | 0–7 years    | Expressive/receptive language                             | Standardized test                      |
| Rosetti Infant Toddler Language Scale–2nd Ed. (Rosetti, 2001) | 0–36 months  | Preverbal and verbal communication                        | Criterion-referenced measure           |

| Vineland Adaptive Behavior Scale–II (Sparrow, Cicchetti, & Balla, 2005) | 0–18 years   | Expressive/receptive/ written language                    | Caregiver report/ structured interview |
 This information, combined with scores on the standard communication measures, can be used to document deficits in the key areas of social communicative functioning that characterize the autism spectrum in the period before age 3. These assessments can then be used to document:

*   That even when “tempted” to communicate, the child initiates communication infrequently (less than one act/minute [Chapman, 2000]).
*   That the child does not spontaneously point or use other conventional gestures, and/or shows a low level of response to the conventional gestures of others.
*   That the child uses unconventional gestures, such as pulling a person by the hand.

*   That the child uses unconventional gestures, such as pulling a person by the hand.
*   That the child shows inconsistent orientation to speech and name. *   An imbalance between frequency of protoimperative and protodeclarative communicative productions.
*   That even when tempted to show and share, with the availability of interesting objects, the child does not seek to engage others in his or her interests or enjoyment.

*   That the child shows deficits in functional and pretend play, even when these schemes are modeled directly.
*   The use of atypical vocalizations, such as a high prevalence of squeaks, squeals, and growls.
*   Unusual features such as atypical vocal and intonational behavior, echoing, and stereotyped phrases, when speech is present.

Not all the instruments listed earlier provide specific contexts for observing all of these behaviors. Thus, clinicians may need to supplement the standard elicitation contexts provided by these measures with additional informal probes in order to have an opportunity to observe the full spectrum of behaviors associated with early communication in ASD. The results of these observations, in combination with more formal assessments of language and communication on standard instruments, can serve

with more formal assessments of language and communication on standard instruments, can serve both to document the presence of deficits in social communication and to provide information on areas of communicative strengths and needs that can serve as a basis for developing a therapeutic program to address these deficits.

SUMMARY AND IMPLICATIONS Although there are few direct empirical data on the development of autism in the earliest months of life, the information that is available suggests that children with this condition show very early-occurring deficits, relative to typical peers, in several areas that are likely to impact the development of both language and communication. These include reduced preferences for faces and voices and subsequent reduced responses to speech and people; failure to use gaze to

for faces and voices and subsequent reduced responses to speech and people; failure to use gaze to regulate interaction through mutual gaze and engagement in joint attention routines; poor imitation of both gestures and sounds, with concomitant reductions in the use of conventional gestures (especially pointing) and the development of the sound-making skills necessary for expressive language acquisition; a range of early communicative acts restricted primarily to requesting and protesting; and

a range of early communicative acts restricted primarily to requesting and protesting; and reduced interest in back-and-forth activities that lay the basis for conversation. Communicative deficits do not disappear with development, and they impact the acquisition of conventional language. Significant delays are present at each of the important transitions in early language development: the emergence of first preverbal communicative acts, the production of single words, the development of

emergence of first preverbal communicative acts, the production of single words, the development of knowledge or word meaning, the vocabulary “spurt,” and the acquisition of multiword utterances. But even when these milestones are achieved, the language of children with ASD continues to function in the context of restricted social motivation and interpersonal connection. For clinicians who address the needs of very young children with ASD, the necessity of assessing and managing not only

address the needs of very young children with ASD, the necessity of assessing and managing not only conventional language, but its foundations in communication, is paramount. Nonspeaking children suspected of autism should be evaluated for the frequency, range, and functions of their preverbal communicative acts, and their means of communication documented. Children with limited communicative intentions need to experience intensive, rewarding opportunities for engaging in joint attention, using

need to experience intensive, rewarding opportunities for engaging in joint attention, using and responding to gestures, and imitating vocal productions as a foundation for language acquisition. Once speech emerges, its use must be carefully guided and organized, so that its communicative value is constantly stressed and reinforced. Teaching speech outside the context of communication is unlikely to result in optimal social functioning. For researchers, the task of finding earlier identifiers

to result in optimal social functioning. For researchers, the task of finding earlier identifiers that differentiate children with ASD from those with other developmental disorders remains. It is unlikely that one marker, such as gaze preference, speech perception, or imitative ability, will be sufficient, but perhaps a combination of these markers may be shown to be discriminative. Ongoing research with children at risk for autism because of its presence in an older sibling will undoubtedly

with children at risk for autism because of its presence in an older sibling will undoubtedly contribute to this effort. However, identifying ASD earlier in life will not be helpful unless effective intervention strategies that are practicable at the earliest phases of development can be found. Here an in-depth understanding of the ways in which typical children integrate the multiple strands of development that enable successful social communication will be crucial. Thus, a major challenge to

development that enable successful social communication will be crucial. Thus, a major challenge to clinical researchers in the next decade will be the development and empirical validation of methods to “teach” children with ASD to do what comes entirely naturally to other children: to listen to speech, to look at people, to imitate what others do. Such methods will most likely involve placing artificial contingencies, such as reinforcement, on the engagement in these behaviors that typical

artificial contingencies, such as reinforcement, on the engagement in these behaviors that typical children find rewarding for their own sake. But evidence from early intervention research in disorders more easily recognized in the first year of life (Guralnick, 1998) suggests that intensifying developmentally appropriate experiences and engaging families in early intervention can have significant and long-lasting effects in ameliorating the level of impairment for children with developmental

and long-lasting effects in ameliorating the level of impairment for children with developmental disorders. Similar outcomes for young children with ASD may be on the horizon.

Understanding, Assessing, and Treating Sensory–Motor Issues GRACE T. BARANEK LINN WAKEFORD FABIAN J. DAVID  In addition to the defining social and communicative features of autism, many young children with this disorder demonstrate differences in sen- sory processing and motor performance that may impact upon social par- ticipation and daily routines. Questions about the sensory–motor features of autism continue to intrigue scientists, practitioners, and families of children with autism

of autism continue to intrigue scientists, practitioners, and families of children with autism inasmuch as they have implications for delineating specific autism phenotypes, making intervention choices, and directing research endeavors. This chapter addresses the relevance of sensory– motor processes to understanding the development of children with autism during the first 3 years of life, and implications of sensory–motor dysfunctions for development, social participation, and engagement in

implications of sensory–motor dysfunctions for development, social participation, and engagement in daily activities. A review of current research findings and theoretical information, as well as a summary of assessments and interventions tar- geting sensory–motor issues, are presented. Case vignettes and excerpts from interviews are provided to illustrate specific concepts or serve as examples.  LITERATURE REVIEW  Development of Sensory–Motor Systems Very little is known about sensory–motor

LITERATURE REVIEW  Development of Sensory–Motor Systems Very little is known about sensory–motor functions in children with autism during infancy, because early development is often characterized in hindsight after a clinical diagnosis of autism is made during the pre- school years for the majority of these children. A knowledge of typical developmental processes is key to understanding where difficulties may arise. Many sensory–motor functions are established at birth but continue to rapidly

may arise. Many sensory–motor functions are established at birth but continue to rapidly develop and reorganize throughout the early childhood years—a process that is dependent on continued and meaningful experiences in naturally complex physical and social environments. Full-term healthy babies are born with the capacity to react to sensory stimuli such as voices and touch, can visually focus on high contrasts in close proximity, and manifest a variety of motor reflexes such as sucking,

on high contrasts in close proximity, and manifest a variety of motor reflexes such as sucking, grasping, and startle. At birth, some sensory systems (e.g., touch, movement sensation) are more developed than others (e.g., smell, hearing, vision). Sensory differ- entiation and integration processes occur across all sensory systems throughout infant development, but are dependent on continued sensory input and experiences (Lewkowicz, 2002). Early developmental theories viewed sensory–motor

sensory input and experiences (Lewkowicz, 2002). Early developmental theories viewed sensory–motor development as a linear process that proceeded invariantly across children (Gesell & Thomp- son, 1943). This conceptualization led to practices of assessing the integrity of the sensory–motor systems solely through attainment of developmental motor milestones or hardwired neurological reflexes. Although a subgroup of children with autism are reported to have delays in acquisition of early motor

a subgroup of children with autism are reported to have delays in acquisition of early motor milestones (e.g., sitting, first steps) (Johnson, Siddons, Frith, & Mor- ton, 1992) and motor delays may progressively increase with age (Ohta, Nagai, Hara, & Sasaki, 1987), the majority of these children reach motor milestones within normal ranges. Although such milestones provide impor- tant developmental records, sensory–motor development is much more complex than a series of hardwired behaviors to

records, sensory–motor development is much more complex than a series of hardwired behaviors to check off a list. Sensory–motor systems provide a necessary foundation for percep- tion and action, as well as many important cognitive and social processes throughout life (Thelen & Smith, 1994). Adequate sensory modulation is needed to maintain appropriate physiological arousal for self-maintenance (e.g., eating, sleeping), to foster development of self-regulatory behaviors (e.g., sucking to

(e.g., eating, sleeping), to foster development of self-regulatory behaviors (e.g., sucking to pacify, self-talk during challenging tasks), and to support motivational systems to engage in meaningful activities (e.g., play prefer- ences) (Dunn, 1997; Parham & Ecker, 2002). Multisensory integration processes are critical to retrieving perceptions of objects and events as well as to ideation and execution of most human actions, also known as praxis (Ayres, 1985; Fogassi & Gallese, 2004). For

execution of most human actions, also known as praxis (Ayres, 1985; Fogassi & Gallese, 2004). For example, the process of a young child learning to button his shirt depends on adequate neural integration of separate sensory modalities, including visual, tactile, and proprioceptive information. Multisensory stimuli that are temporally and/or spatially congruent (i.e., separate stimuli occur in close proximity, simultaneously in time, and/or are similar in context) enhance neural activity and

close proximity, simultaneously in time, and/or are similar in context) enhance neural activity and reaction times during cognitive or motor tasks. Successful completion of a complex task, such as buttoning, for example, also requires motor control and planning. Specifically, feedforward motor sys- tems plan movement based on prior experience, thus dictating the most efficient grasp and bimanual patterns for the child beginning to button his shirt, whereas feedback motor systems adjust for

patterns for the child beginning to button his shirt, whereas feedback motor systems adjust for subtle errors in coor- dination based on incoming sensory information, such as the child feel- ing that he missed the buttonhole and needs to try again. Furthermore, multisensory integration processes continually shape a child’s view of his or her world by allowing perception of objects, people, and events as integrated wholes and not just as separate sensory modali- ties (Lewkowicz, 2002; Wallace,

as integrated wholes and not just as separate sensory modali- ties (Lewkowicz, 2002; Wallace, 2004). For instance, the perception of an object such as an apple cannot be reduced solely to its separate visual (red color), tactile (smooth skin), gustatory (sweet taste) and auditory (crunchy sound) features, although all of these attributes play an important role in the gestalt perceptual experience and inform potential actions (e.g., pick the apple; eat the apple). Research with children with

and inform potential actions (e.g., pick the apple; eat the apple). Research with children with autism has identi- fied difficulties with being able to formulate gestalt perceptions, some- times referred to as weak central coherence (Happe, 1994). Some chil- dren with autism are quite adept at parsing objects or events into component features (e.g., reproducing block designs by shape or color), but less able to arrive at the overall contextual meaning (e.g., deciphering the pattern in the

but less able to arrive at the overall contextual meaning (e.g., deciphering the pattern in the design), a process that is at least partially dependent on adequate multisensory integration. Sensory–perceptual functions and executive functions for control of

action appear to be separate but interrelated functions, made possible by numerous reciprocal connections in the parietal and frontal regions of the brain, as well as through interconnections with lower-order structures in the brainstem, nerves, and muscles (Fogassi & Gallese, 2004). Neuro- logical processes enabling the retrieval of representations of objects, indi- viduals, or actions greatly benefit from information arriving through different and multiple sensory modalities and parallel

benefit from information arriving through different and multiple sensory modalities and parallel streams of process- ing information. For example, a preschool-age child can speculate that another person is dribbling a basketball just by hearing the sound of the ball bouncing against the pavement, without actually seeing the person bouncing the ball. Research confirming the existence of “mirror neurons” reinforces this point, as specific regions of the brain (e.g., Broca’s area [Brodmann’s 44

neurons” reinforces this point, as specific regions of the brain (e.g., Broca’s area [Brodmann’s 44 and 45] and inferior parietal cortex) may activate not only during our own manual actions with objects, but in just watching other people perform intentional manual actions with objects (Rizzolatti & Craighero, 2004). Thus, multisensory integration is a process that helps to support a child’s ability to understand human action and intention, or “theory of mind”—a function that may be more

ability to understand human action and intention, or “theory of mind”—a function that may be more difficult for young chil- dren with autism (Happe & Frith, 1995; Baron-Cohen, 2000). Theoretically, disruptions in the integrity of the sensory–motor sys- tems at any point in development may result in distorted perceptions of events or contribute to a narrower action repertoire. Sensory–motor learning processes are especially critical early in development when the nervous system is most malleable

processes are especially critical early in development when the nervous system is most malleable and much neuronal pruning takes place to make cognitive processing more efficient. In infancy, excessive neu- ral connections between various sensory-specific regions are gradually pruned over the course of development and replaced by experience- dependent connections from repeated and meaningful sensory–motor experiences. Interestingly, head circumference (and presumably brain vol- ume) of many

experiences. Interestingly, head circumference (and presumably brain vol- ume) of many children later diagnosed with autism is of normal size at birth, but increases dramatically during the first 3 years of life (Hazlett et al., 2005; Lainhart et al., 1997; Redcay & Courchesne, 2005). These find- ings implicate deficits in the neural pruning process and resultant func- tional connectivity very early in the development of children with autism. The cause of this abnormality and the extent to

early in the development of children with autism. The cause of this abnormality and the extent to which specific sensory– motor or cognitive experiences can alter neurological functions and early developmental trajectories is unknown. Although dividing sensory and motor processes into mutually exclusive

entities is naive from a neurological perspective, much of the autism liter- ature separates studies of “sensory features” (or sensory processing dis- ruptions) from those of “motor features” (or movement disorders) (cf. Baranek, Parham, & Bodfish, 2005). Thus, for the sake of clarity, our review of these studies is similarly divided into the two sections that fol- low.  Sensory Features Although unusual sensory features are not thought to be universal in autism (Dawson & Watling, 2000), they

unusual sensory features are not thought to be universal in autism (Dawson & Watling, 2000), they appear to be highly prevalent, early emerging, and contributory to differential diagnosis and interven- tion planning (Dawson & Watling, 2000; Baranek et al., 2005). Research conducted with preschoolers with autism confirms higher rates of some sensory features in autism, as compared with both typically developing children (Kientz & Dunn, 1997; Watling, Deitz, & White, 2001) and chil- dren with

developing children (Kientz & Dunn, 1997; Watling, Deitz, & White, 2001) and chil- dren with other developmental disabilities (Baranek, David, Poe, Stone, & Watson, 2006; Rogers, Hepburn, & Wehner, 2003). Traditionally, these studies used parent-report instruments, which have some inherent subjec- tive bias, but good ecological validity. Rogers, Hepburn, and Wehner (2003) used the Short Sensory Profile and demonstrated that tactile sensi- tivity, taste/smell sensitivity, and underreactivity

Profile and demonstrated that tactile sensi- tivity, taste/smell sensitivity, and underreactivity were most often en- dorsed by parents of children of ages 26–41 months with autism. Baranek et al. (2005) utilized the Sensory Experiences Questionnaire (SEQ) and concluded that approximately 69% of a preschool-age sample of children with autism showed significantly increased levels of sensory features. Two patterns (not mutually exclusive) were identified, with 56% of the sample showing

features. Two patterns (not mutually exclusive) were identified, with 56% of the sample showing hyperresponsiveness and 63% showing hyporesponsiveness to sensory experiences. Approximately 38% of this autism sample evidenced high levels of both patterns, which was much less likely (~2%) in children with other developmental disabilities. A few studies have presented clinical chart reviews with similar find- ings. For example, Greenspan and Wieder (1997) reviewed medical records of 200 clinical

find- ings. For example, Greenspan and Wieder (1997) reviewed medical records of 200 clinical cases of preschoolers with autism and reported similar patterns of hyperresponsiveness, hyporesponsiveness, and mixed patterns. Psychophysiological findings from older children with autism and related developmental disorders support these behavioral findings (e.g., McAlonan et al., 2002; Hirstein, Iversen, & Ramachandran, 2001). However, some studies measuring sensory gating have failed to show

Iversen, & Ramachandran, 2001). However, some studies measuring sensory gating have failed to show autism-specific deficits (Tecchio et al., 2003; Frankland et al., 2004; Kemner, Oranje, Verbaten, & Van Engeland, 2002). In contrast, there is very little information available from observational studies of very young children with autism. Although not universal, unusual sensory features are recounted by many parents of children with autism early in development. In some cases, sensory symptoms as

by many parents of children with autism early in development. In some cases, sensory symptoms as recollected by parents, accompanied or pre- ceded the emergence of social-communicative features of autism. “When he was around 7 months of age I started taking my child to a play group and noticed that he didn’t like to be put down in the grass. He would get upset at the grass touching his body . . . he would visibly tense up. If I lowered him into a sandbox he would lift his feet and legs up as

. he would visibly tense up. If I lowered him into a sandbox he would lift his feet and legs up as long as he could to keep the sand from touching him, take a break, then do it again.”—Interview with a parent of a young child with autism, Sensory Experiences Project (SEP), University of North Carolina–Chapel Hill Such idiosyncratic observations have been endorsed by many parents in sys- tematic parent-report studies (e.g., Ohta et al., 1987; Hoshino et al., 1982; Ornitz & Ritvo, 1968), as well

studies (e.g., Ohta et al., 1987; Hoshino et al., 1982; Ornitz & Ritvo, 1968), as well as through observation of behaviors in retro- spective video analyses of home movies of 8- to 12-month-old infants later diagnosed with autism (e.g., Baranek, 1999a; Adrien et al., 1993; Werner, Dawson, Osterling, & Dinno, 2000). Symptoms have included lack of orient- ing to auditory and visual stimuli, excessive mouthing of objects, and gaze and social touch aversions, to name a few. Recent research on

mouthing of objects, and gaze and social touch aversions, to name a few. Recent research on high-risk sam- ples of infant siblings of children with autism also confirm the presence of unusual sensory features such as difficulties with visual tracking and disen- gagement of visual attention, and sensory-oriented object manipulations by 12–18 months of age (Wetherby et al., 2004; Zwaigenbaum et al., 2005). Pro- spective longitudinal studies on sensory features are nonexistent. Cross- sectional

2005). Pro- spective longitudinal studies on sensory features are nonexistent. Cross- sectional studies demonstrate mixed findings with respect to whether sen- sory symptoms increase (Talay-Ongan & Wood, 2000), decrease (Baranek, Foster, & Berkson, 1997; Baranek et al., 2006), or do not change (Rogers, Hepburn, & Wehner, 2003) with developmental maturation. Utilizing the Sensory Processing Assessment for Young Children (SPA; Baranek, 1999c) researchers found that younger or cognitively delayed

for Young Children (SPA; Baranek, 1999c) researchers found that younger or cognitively delayed children, regardless of their diagnoses, evidenced greater avoidance and adverse reaction to sen- sory experiences than older and more developmentally mature children (Baranek, Boyd, Poe, David, & Watson, 2007). Thus, some sensory features may not be specific to autism, but may still have significant implications for intervention, especially when the level of experienced distress impacts upon family

for intervention, especially when the level of experienced distress impacts upon family members’ ability to care for their child or participate in community activities.  A variety of conceptual frameworks discuss the likelihood that altered sensory thresholds may decrease/increase sensitivity to specific sensory experiences and constrict optimal engagement in play, envi- ronmental exploration, and social interaction that form the basis for further learning opportunities (Dunn, 1997; Baranek,

and social interaction that form the basis for further learning opportunities (Dunn, 1997; Baranek, Reinhartsen, & Wannamaker, 2001; Miller, Reisman, McIntosh, & Simon, 2001). Anec- dotally, many young children with autism are reported to have difficulties in tolerating specific sensory experiences such as noisy environments, messy materials, or physical affection (Grandin, 1996; Smith, Roux, Naidoo, & Venter, 2005; Watling et al., 2001). “She hates for me to clean her ears, and that can be

Naidoo, & Venter, 2005; Watling et al., 2001). “She hates for me to clean her ears, and that can be just with a Q-tip or washing her ears. I mean she really pulls at the washcloth. She throws the Q-tips away or hides the Q-tips. I’ve even tried giving her the washcloth and letting her clean her own ears. She just really hates for anything to be around her ears. Even if I wait until she’s been asleep for hours and try to go wash her ears, she’ll still wake up. And she gets really upset, I mean

for hours and try to go wash her ears, she’ll still wake up. And she gets really upset, I mean to the point where she can be in tears. . . . I ask her if it’s painful and she says ‘no.’ She says it doesn’t hurt, ‘It feels funny’ is the way she would answer, ‘It feels funny.’ ”—Interview with a parent of a young child with autism, SEP, University of North Carolina–Chapel Hill Although less obvious, many children with autism have difficulties in sufficiently responding to salient sensory stimuli,

many children with autism have difficulties in sufficiently responding to salient sensory stimuli, as evidenced by hypo- sensitivity to pain, delay in orienting to name, or lack of attention to novel visual events (Baranek et al., 2006). In rarer cases, sensory input may be atypically combined across modalities, as in the case of synesthesia, or altered to form an idiosyncratic perception of an event (Cytowic, 2002; Jones, Quigney, & Huws, 2003). It is possible that neurological matura- tion as

(Cytowic, 2002; Jones, Quigney, & Huws, 2003). It is possible that neurological matura- tion as well as learned self-regulatory strategies and environmental adap- tations may play a role in helping to modulate such hyper- and hypo- responsive reactions over time. The ability of parents or other caregivers to adapt to a child’s sensory features can impact the number, type, or quality of shared social experiences, both good and bad. For example, “good” sensory experiences for the child also lead

experiences, both good and bad. For example, “good” sensory experiences for the child also lead to feelings of content- ment for the parents: “A good experience is usually when he is playing outside on the swing set. He is more relaxed, happy. The motion of it relaxes him. Oh, it is great—I love it when he is outside . . . he has so much fun!”—Interview with a parent of young child with autism, SEP, University of North Carolina–Chapel Hill whereas “bad” sensory experiences cause distress and

SEP, University of North Carolina–Chapel Hill whereas “bad” sensory experiences cause distress and lead to avoidance and constraints on family routines. In some cases these experiences may be interpreted as behavioral inflexibility, inasmuch as the young child with autism strives to make his or her sensory experience more predict- able. “Vacuum, loud noises . . . she covers her ears. . . . It’s like she wants to get away from it. I don’t run the vacuum cleaner when she’s around, that’s for

like she wants to get away from it. I don’t run the vacuum cleaner when she’s around, that’s for sure! I use the broom. She likes to play with it when it is not on. . . . Her dad has loud music on when we come home, but I make him turn it down before we come in the door because I know it would set her off.”—Interview with a parent of young child with autism; SEP, University of North Carolina–Chapel Hill  Motor Features Now we turn our attention to the nature of motor features, including vol-

Hill  Motor Features Now we turn our attention to the nature of motor features, including vol- untary and involuntary movement disorders, in young children with autism. Although some children with autism have motor skills that appear relatively stronger than their social and communication skills (Stone, Ous- ley, Hepburn, Hogan, & Brown, 1999), subtle motor difficulties are fre- quently noted in children with autism as compared with typical reference norms (Ghaziuddin & Butler, 1998; Manjiviona

with autism as compared with typical reference norms (Ghaziuddin & Butler, 1998; Manjiviona & Prior, 1995). Spe- cifically, Manjiviona and Prior reported that 50–67% of high-functioning children with autism in their sample had significant gross and fine motor impairments on a standardized test. On the contrary, Rogers, Hepburn, and Wehner (2003) did not find significant differences in standardized measures of general fine and gross motor skills of toddlers with autism relative to

in standardized measures of general fine and gross motor skills of toddlers with autism relative to mental-age-matched controls. Motor abnormalities may interfere with adaptive tasks such as but- toning and writing, as well as social-communicative functions, such as speech articulation, gesturing, and eye gaze coordination (Gilotty, Kenworthy, Sirian, Black, & Wagner, 2002; Leary & Hill, 1996; Takarae, Minshew, Luna, Krisky, & Sweeney, 2004). Motor issues may be inter- twined with the core

Takarae, Minshew, Luna, Krisky, & Sweeney, 2004). Motor issues may be inter- twined with the core features of autism and have implications for early development of intersubjectivity and communicative intent (Rogers & Pennington, 1991; Hobson & Lee, 1999). For example, interpersonal syn- chrony of bodies, facial expressions, eye movements, voices, and move- ments is important to emotional expression and social exchanges.  Case Vignette Charlie is a verbal, high-functioning boy with autism.

and social exchanges.  Case Vignette Charlie is a verbal, high-functioning boy with autism. Charlie’s gait pattern is unusual—he walks on his toes with a little extra “bounce” in his step. Articulation errors make his speech somewhat harder to understand out of context. Charlie drools a bit, particularly during mealtimes, and has difficulty chewing textured foods and sucking through a straw. During music class, Charlie’s hand motions seem a little out of sync with the accompanying song lyrics.

music class, Charlie’s hand motions seem a little out of sync with the accompanying song lyrics. Art activities are avoided as he struggles with the use of tools for drawing and cutting. A variety of subtle motor abnormalities may be present in children with autism (Leary & Hill, 1996; Sweeney, Takarae, Macmillan, Luna, & Minshew, 2004; Rinehart, Bradshaw, Brereton, & Tonge, 2001; Schmitz, Martineau, Barthelemy, & Assaiante, 2003; Mari, Castiello, Marks, Marraffa, & Prior, 2003), with

Martineau, Barthelemy, & Assaiante, 2003; Mari, Castiello, Marks, Marraffa, & Prior, 2003), with prevalence estimates ranging as high as 85– 90% (Miyahara et al., 1997; Wing, 1981), at least in older samples of chil- dren. Clinical observations often report specific difficulties in praxis and smooth coordination of movements (DeMyer, Barton, & Norton, 1972; Trecker, 2001), but empirical studies with very young children are lacking. Praxis requires ideation, planning, and execution of skills in

very young children are lacking. Praxis requires ideation, planning, and execution of skills in novel ways (Ayres, 1985) and may impact a child’s ability to use tools, imitate human actions, and play sports, for example. Motor planning and coordination between various components of a motor task are essential for efficient movement. Greenspan and Wieder (1997) reported that in 100% of the cases reviewed in their study, the children manifested some difficulties with motor planning/sequencing,

reviewed in their study, the children manifested some difficulties with motor planning/sequencing, with 48% demonstrating severe diffi- culties in this area. DeMyer and colleagues (1972) found that children with autism had strengths in repetitive gross motor skills such as stair climbing, but had difficulties in complex skills requiring imitation of arm movements or complex ball play. Parham, Mailloux, and Roley (2000) noted that oral praxis, which is critical for speech articulation, was

Mailloux, and Roley (2000) noted that oral praxis, which is critical for speech articulation, was partic- ularly problematic for children with autism relative to matched controls. It is unclear as to which aspects of praxis may or may not be specifi- cally affected in autism—for example, difficulties in establishing motor patterns, changing movement patterns in response to sensory cues, tim- ing/sequencing movements, inhibiting actions, or using sensory feedback to guide movement. Two studies

movements, inhibiting actions, or using sensory feedback to guide movement. Two studies (Rinehart et al., 2001; Mari et al., 2003) showed that deficits may be more noticeable in movement prepara- tion then in the execution phase once the movement begins for high- functioning persons with autism. David et al. (2007) demonstrated evi- dence for temporal dyscoordination during a precision grip task that most typically developing 7-year-olds accomplish fluidly, and found that older children with

that most typically developing 7-year-olds accomplish fluidly, and found that older children with autism tended to utilize compensatory strategies, such as gripping harder to lift the object, to aid successful completion of the task. Such deficits have also been found in persons with cerebellar dysfunctions (Fellows, Ernst, Schwarz, Topper, & Noth, 2001). Questions arise about whether or not certain motor features or deficits in movement control are specific to autism, inasmuch as children with

motor features or deficits in movement control are specific to autism, inasmuch as children with other disorders manifest similar motor problems. Imitation of actions and body postures is an aspect of praxis that is important for social-communicative development in children with autism (Smith & Bryson, 1994). Researchers have suggested that imitation diffi- culties in children with autism may not be the result of problems in abstracting the meaning of the actions (Rogers, Bennetto, McEvoy, &

be the result of problems in abstracting the meaning of the actions (Rogers, Bennetto, McEvoy, & Pen- nington, 1996; Stone, Ousley, & Littleford, 1997; Hughes & Russell, 1993), but rather may reflect difficulties in generating or using internal somatosensory representations, because children with autism have greater difficulties in imitating body postures and oral movements than in imitat- ing object manipulations (Stone et al., 1997; DeMyer et al., 1972; Page & Boucher, 1998; Parham et al.,

object manipulations (Stone et al., 1997; DeMyer et al., 1972; Page & Boucher, 1998; Parham et al., 2000; Adams, 1998; Rogers, Hepburn, Stackhouse, & Wehner, 2003). Such “proprioceptive” deficits affecting praxis require further research but may have implications for treatment such that reproduction of actions may be facilitated in the context of ongoing visual cues. Because there appears to be a correlation between aspects of imitative praxis, particularly sequencing of oral and/ or fine motor

correlation between aspects of imitative praxis, particularly sequencing of oral and/ or fine motor movements, and expressive speech development (Rogers & Bennetto, 2000), later language abilities (Stone et al., 1997; Sigman & Ungerer, 1984), as well as sign vocabulary (Seal & Bonvillian, 1997) in children with autism, these issues have ramifications for early intervention and general prognosis.  How early are motor features evident in children with autism? Descriptive reports, including case

How early are motor features evident in children with autism? Descriptive reports, including case studies (e.g., Dawson, Osterling, Meltzoff, & Kuhl, 2000) and parent surveys (e.g., Ornitz, Guthrie, & Farley, 1977) often endorse unusual motor aspects of children with autism such as hypotonia and repetitive movements that are first evident during infancy. Impaired motor imitation has been reported in numerous studies of toddlers with autism (Stone et al., 1997; Charman et al., 1997) and these

in numerous studies of toddlers with autism (Stone et al., 1997; Charman et al., 1997) and these skills seem to improve over the course of development or perhaps with treatment. Stereotyped movements may become more apparent dur- ing the preschool years for children with autism (Cox et al., 1999; Lord, 1995) and may be associated with less environmental exploration in novel situations (Pierce & Courchesne, 2001). “I really don’t understand it. I think there’s some thing that he gets in his

& Courchesne, 2001). “I really don’t understand it. I think there’s some thing that he gets in his body, because now that he can communicate a little bit more, I can ask him. Sometimes he jumps when I don’t want him to jump, and I’ll say, ‘Freddy, can you stop your body? Can you stop jumping?’ And the other day for the first time he actually went like this and hugged himself tightly. I think sometimes he jumps when he’s excited. From what I’ve read, proprioceptive input . . . I think there’s

he jumps when he’s excited. From what I’ve read, proprioceptive input . . . I think there’s something in the way his brain gets messages from his body that jumping satisfies for him. I’ve read a number of things by adults with autism about their sensory experience, and I’ve really tried to be more understanding and more respectful of the fact that his body is different than mine. His brain works differently than mine, and the things that I may not understand may actually be very important to

differently than mine, and the things that I may not understand may actually be very important to him, and very pleasurable to him. So, just trying to, you know, come to terms with that as we live our lives together.”—Interview with a par- ent of a young child with autism, SEP, University of North Carolina– Chapel Hill “Abnormal” stereotypies are more difficult to separate out in infancy, because most typically developing children also manifest a variety of rhythmic motor movements (e.g., leg

most typically developing children also manifest a variety of rhythmic motor movements (e.g., leg kicking, arm flapping) and repeti- tive object explorations (banging, mouthing, waving) in their first year of life (Baranek, 1999a; Thelen, 1981). A critical review of 12 different stud- ies (Symons, Sperry, Dropik, & Bodfish, 2005) reported that the onset of rhythmic movements was delayed in children at risk for developmental problems (including those with autism), but that their sequencing or

at risk for developmental problems (including those with autism), but that their sequencing or developmental course was similarly predictable to typical development. Typical infant stereotypies appeared to be transient and associated with development of motor skills, neuromuscular development, and/or gen- eral neurological maturation, whereas in children with autism or other developmental delays, motor and object stereotypies may persist or change in their functions over time. Well-controlled

motor and object stereotypies may persist or change in their functions over time. Well-controlled longitudinal studies of early motor features are lack- ing. Retrospective video analysis methods have analyzed motor fea- tures, predominantly in an effort for early diagnosis (Baranek, 1999a; Teitelbaum, Teitelbaum, Nye, Fryman, & Maurer, 1998). Baranek (1999a) reported in 9- to 12-month video footage that children with autism mouthed objects more than children with other developmental disabili-

that children with autism mouthed objects more than children with other developmental disabili- ties. Unusual motor posturing and visual object fixations were also noted in children with autism, at least more so than children developing typi- cally, but other repetitive motor and object stereotypies did not differenti- ate the three groups. Teitelbaum et al. (1998) also reported movement dif- ferences very early in the development of children with autism as compared with typically developing

very early in the development of children with autism as compared with typically developing children, although disability compari- son groups were not studied. A variety of abnormal involuntary movements, either idiopathic or medication-induced, may also occur in autism (Leary & Hill, 1996; Wing, 1997), but these features are reported less in studies with very young chil- dren. Detection of involuntary motor features is difficult because several discrete types of involuntary movements may

involuntary motor features is difficult because several discrete types of involuntary movements may co-occur, involve several body parts, show a variable course of expression over time, or become dif- ficulty to differentiate from voluntary movement patterns (Lewis & Bodfish, 1998; Marsden, 1984). Case reports and empirical studies of per- sons with autism have reported the existence of tics, catatonia, dyskinesia, akathisia, bradykinesia, and gait/posture abnormalities (Bodfish, Symons,

catatonia, dyskinesia, akathisia, bradykinesia, and gait/posture abnormalities (Bodfish, Symons, Parker, & Lewis, 2000; Damasio & Maurer, 1978; Realmuto & August, 1991; Wing & Shah, 2000). Gait and postural abnormalities have been observed via kinematic motion analysis (Kohen-Raz, Volkmar, & Cohen, 1992; Gepner & Mestre, 2002), but these studies are harder to conduct with very young children.  ASSESSMENT Sensory–motor functions are but one aspect of development that may need to be considered in

Sensory–motor functions are but one aspect of development that may need to be considered in the assessment process for young children with autism. A variety of professionals, including occupational therapists, physical therapists, speech and language pathologists, teachers, psycholo- gists and/or pediatricians, working together as a team may be involved. Based on recommended practices within the field of early intervention, the assessment of young children with disabilities, including those

field of early intervention, the assessment of young children with disabilities, including those with autism, should be conducted using a family-centered approach, utilizing the expertise of parents about the strengths and needs of their children (Sandall, Hemmeter, Smith, & McLean, 2004). Ecological and transaction- al theories inform the multidisciplinary assessment process with a focus on the ability of the child to engage in everyday routines and activities in typical family and community

ability of the child to engage in everyday routines and activities in typical family and community environments (Wolery, Brashers, & Neitzel, 2002). Thus, sensory–motor functions are usually addressed within the broader context of how they impact on daily life. The process of assessment for a young child with autism begins with parents and other significant caregivers (teachers, extended family mem- bers, etc.) as key informants about the contexts and activities in which the child is both

mem- bers, etc.) as key informants about the contexts and activities in which the child is both successful and unsuccessful, and identifies their concerns and priorities as a guide for further assessment and intervention plan- ning.  Case Vignette Janelle, the mother of Aaron, a 2½-year-old boy with autism, relates during an interview assessment, “I’ve watched him on the playground out there—at his school. He either sits on the bench under the tree or walks around next to the fence. I think of

school. He either sits on the bench under the tree or walks around next to the fence. I think of him as loving to be outside, but . . . not there. He can’t do it, for some reason. I would really like to see that change . . . see him having a good time out there on the school playground.” Analysis of the child’s performance, conducted in the time, place, and social environment in which the activity or routine typically occurs, is an important aspect of the assessment process. (Occupational

or routine typically occurs, is an important aspect of the assessment process. (Occupational Therapy Practice Framework: Domain and Process, 2002). The analysis of this child/activity/context transaction provides the basis for more detailed evaluation, as breakdowns in functional performance and adaptive behav- iors in everyday contexts are identified. In examining contextual issues, a therapist determines which qualities of the environment support the child’s performance, and which inhibit it.

which qualities of the environment support the child’s performance, and which inhibit it. These factors may include the physical environment, social milieu, cultural circumstances (e.g., values, family rituals, classroom routines), and temporal context (e.g., schedules, routines). In examining the activities with which the child has difficulty, as with contextual factors, the therapist determines which qualities of a task support the child’s performance, and which inhibit it. Factors to be

which qualities of a task support the child’s performance, and which inhibit it. Factors to be considered include the meaning of the task to the child or caregivers, as well as the various sensory, cognitive, social, communication, motor, and affective demands needed to complete the task. When examining the child’s capacities, sensory–motor skills such as praxis, fine motor control, and sensory modulation abilities may be evaluated when it appears that these have a bearing on the child’s

modulation abilities may be evaluated when it appears that these have a bearing on the child’s functional performance. In the case example of Aaron (above), the therapist may interview the teacher and parents about the meaning of the playground activities and their expecta- tions for performance, observe Aaron on the playground to gain a sense of his skills in the context of the physical and social environment, and conduct specific skills assessments.  Specific Sensory–Motor Assessments There

environment, and conduct specific skills assessments.  Specific Sensory–Motor Assessments There are several types of assessments that may be used to examine the specific sensory–motor capacities of a child with autism. The choice of an assessment tool is determined by the purpose of assessing. Such purposes include estimating the prevalence of sensory–motor features, systemati- cally describing early sensory–motor development, assisting in detecting and quantifying deviations from typical

early sensory–motor development, assisting in detecting and quantifying deviations from typical trajectories, establishing a diagno- sis, and providing guidelines for intervention and evaluating outcomes. Sensory–motor assessments can be broadly classified as screening and diagnostic assessments. Screenings are done for those infants who are at risk for developmental problems—for example, infants born prematurely, with low birth weight, or with other pre-, post-, or perinatal complications.

born prematurely, with low birth weight, or with other pre-, post-, or perinatal complications. Screenings are quick and provide information about the requirement for further in-depth evaluation, whereas diagnostic assessments are done for children who exhibit specific symptoms or concerns and thus require a more detailed assessment, the outcome of which can be a specific diagno- sis or referral for services. Typically, such diagnostic evaluations use a combination of standardized assessments

for services. Typically, such diagnostic evaluations use a combination of standardized assessments and clinical observations. Sensory–motor assessments are seldom used with young children with autism for the purpose of obtaining a clinical diagnosis of autism; how- ever, many comprehensive developmental evaluations include an assess- ment of sensory–motor development. Consequentially, sensory–motor assessments may be used as a supplement to the diagnostic process for the purposes of further

assessments may be used as a supplement to the diagnostic process for the purposes of further delineating the child’s strengths and weakness as recommendations are made for intervention. The next two sections present a variety of tools that are available and may be appropriate for the assessment of children ages birth through 3 years, including autism. Even though the assessments discussed below are standardized, norm-referenced to a typical sample or criterion-referenced to typical

below are standardized, norm-referenced to a typical sample or criterion-referenced to typical development, and possess acceptable psychometric properties, their use with children with autism in most instances is not validated. Therefore, clinicians planning to use these assessments with children with autism should be cautious when interpreting and comparing results to the published norm- and criterion-referenced criteria, especially if adapta- tions are made to standardized administration

criterion-referenced criteria, especially if adapta- tions are made to standardized administration procedures.  Motor Assessments Seven motor assessments with applicability to children ages birth through 3 years are summarized here. Given the decontextualized nature of the majority of standardized motor assessments, caution is advised when interpreting results, especially for intervention purposes. However, many of these assessments have validity for their intended purpose of classify- ing

However, many of these assessments have validity for their intended purpose of classify- ing levels of delay in young children relative to the normative population, and some may be particularly useful in research contexts. Six of the seven assessments described utilize an observational format and, to be used val- idly, require some level of training in their administration and scoring. The Ages and Stages Questionnaires (ASQ; Squires, Potter, & Bricker, 1995) is the one exception that uses a

and Stages Questionnaires (ASQ; Squires, Potter, & Bricker, 1995) is the one exception that uses a parent-report format. It consists of 19 reproducible questionnaires that were designed to screen developmental delays and monitor the development of children from ages 4 to 60 months who may be at risk for developmental problems. Each form has 30 ques- tions in five areas (i.e., communication, fine motor, gross motor, problem solving, personal social) that correspond to a specific age.

fine motor, gross motor, problem solving, personal social) that correspond to a specific age. Developmental quotients can be derived. This tool is most often used in pediatric prac- tices or early intervention programs that conduct systematic screening and surveillance. The Alberta Infant Motor Scale (AIMS; Piper & Darrah, 1994) is an observational screening tool that characterizes motor development of infants from 0 to 18 months. It consists of four subscales (i.e., Prone, Supine, Sitting, and

of infants from 0 to 18 months. It consists of four subscales (i.e., Prone, Supine, Sitting, and Standing) that encompass movements typically ob- served in common body positions of young infants. It is often used by occupational or physical therapists working with young infants in high- risk settings. Raw scores, positional scores, and total scores can be calcu- lated. The total scores are plotted to obtain a percentile ranking com- pared with a normative age-matched sample. This screener does

to obtain a percentile ranking com- pared with a normative age-matched sample. This screener does not rely on verbal instruction and thus may have better applicability to children with autism, who often have difficulty in understanding verbal instruc- tions. The Peabody Developmental Motor Scales—Second Edition (PDMS-2; Folio & Fewell, 2000) were designed to assess motor development in young chil- dren with disabilities or developmental delays between the ages of birth and 6 years. This

chil- dren with disabilities or developmental delays between the ages of birth and 6 years. This well-standardized tool consists of six subtests (Reflexes, Stationary, Locomotion, Object Manipulation, Grasping, Visual–motor Integration) that generate global indices of motor performance including Gross (GMQ), Fine (FMQ), and Total Motor Quotients (TMQ). Various quantitative scores (raw scores, norm-referenced standard scores, or age equivalents) can be obtained. The PDMS-2 has been evidenced to

standard scores, or age equivalents) can be obtained. The PDMS-2 has been evidenced to be sen- sitive to change and may be used as an outcome or evaluative measure (Kolobe, Palisano, & Stratford, 1998; Bayley, 1993; Goyen & Lui, 2002). Some items on the PDMS-2 require verbal instruction and/or imitation that may be difficult for some children with autism. This tool is often used by occupational and physical therapists in a variety of diagnostic and treatment settings, as well as by researchers

physical therapists in a variety of diagnostic and treatment settings, as well as by researchers studying motor development. The Gross Motor Function Measure (GMFM; Russell, Rosenbaum, Avery, & Lane, 2002) was originally designed to assess gross motor skills in children with cerebral palsy or acute head injury. All items on the GMFM can be completed by a typically developing 5-year-old child; thus, the test is most appropriate for children below 5 years or for those over 5 years with obvious

the test is most appropriate for children below 5 years or for those over 5 years with obvious movement impairments. Recent studies have validated its use with children with Down syndrome and other intellectual impair- ments (Kolobe et al., 1998; Palisano et al., 2001; Russell et al., 1998), and it has shown sensitivity to change in one study (Russell et al., 1993). Thus, this tool may be applicable to other similar populations evidencing quan- titative or qualitative deficits in gross motor

to other similar populations evidencing quan- titative or qualitative deficits in gross motor skills. Raw scores, criterion- referenced total percent scores, dimension percent scores, and motor growth scores can be calculated. The GMFM assesses skills in the context of five domains (i.e., Lying/rolling, Sitting, Crawling/kneeling, Standing, and Walking/running/jumping). The Toddler and Infant Motor Evaluation (TIME; Miller & Roid, 1994) was designed to assess qualitative dimensions of motor

Motor Evaluation (TIME; Miller & Roid, 1994) was designed to assess qualitative dimensions of motor abilities of chil- dren between 4 months and 3½ years of age and requires some clinical expertise to use skillfully. It consists of eight subtests (i.e., Mobility, Stabil-

ity, Motor Organization, Functional Performance, Social/emotional Abil- ities, Component Analysis, Quality Rating, and Atypical Positions). Raw scores, standard scaled scores (except for quality rating and component analysis), and growth scores for motor organization can be calculated. All eight subtest scores have been evidenced to discriminate children with atypical development from those with typical development (Miller & Roid, 1994). The instructions and testing format are lengthy but allow

development (Miller & Roid, 1994). The instructions and testing format are lengthy but allow much flexibility that is useful with infants across various settings. The TIME requires some pretend play in order to assess motor organization, a skill that is often a weakness for young children with autism. The Bayley Scales of Infant and Toddler Development, Third Edition (Bayley- III; Bayley, 2006) is a well-validated and standardized observational assess- ment for children from birth to 42 months

a well-validated and standardized observational assess- ment for children from birth to 42 months of age. The previous version of the Bayley has often been used in multidisciplinary clinical or research set- tings and has numerous validity studies showing its ability to discriminate between children with developmental delay and those who are typically developing (Bayley, 1993). The Bayley-III has a variety of developmental scales, including a Motor Scale that assesses fine and gross motor

has a variety of developmental scales, including a Motor Scale that assesses fine and gross motor skills, and yields age-equivalent scores as well as a norm-referenced developmental index. A variety of professionals with expertise in motor development (e.g., occupational and physical therapists; early interventionists) are trained to validly administer this assessment and interpret the results. The Mullen Scales of Early Learning—AGS Edition (MSEL; Mullen, 1995) is another well-validated,

The Mullen Scales of Early Learning—AGS Edition (MSEL; Mullen, 1995) is another well-validated, comprehensive observational assessment that is standardized for children from birth to 68 months. The MSEL is composed of gross motor, fine motor, visual reception, expressive language, and receptive language subscales and is widely used as a general measure of cog- nitive abilities in young children with autism in both clinical and research settings. Apart from obtaining an overall Early Learning

with autism in both clinical and research settings. Apart from obtaining an overall Early Learning Composite, stan- dardized T-scores, percentiles, and age equivalents can be computed for each subscale, enabling the isolated use of the gross and fine motor sub- scales for diagnostic or tracking purposes by specialized professionals.  Sensory Processing Assessments Five sensory processing assessments are reviewed here that may have applicability to very young children with autism and related

are reviewed here that may have applicability to very young children with autism and related disabilities, ages birth through 3 years. Three of these are parent-report instruments, and two are observational instruments. These tools are most often used by occupational therapists in either clinical or research settings, but are gaining popularity with other disciplines. Cautions about decontextual- ized assessments, similar to those presented in the discussion of motor assessments, are also

ized assessments, similar to those presented in the discussion of motor assessments, are also warranted here. In addition, most of these sensory processing assessments are criterion-referenced and do not provide true norm-referenced scores, which are possible only with studies utilizing large representative samples. The Evaluation of Sensory Processing (ESP; Parham & Ecker, 2002) is a 76 item caregiver questionnaire that assesses sensory processing difficul- ties in children from 2 to 12 years.

questionnaire that assesses sensory processing difficul- ties in children from 2 to 12 years. It consists of six subscales: Auditory, Gustatory/Olfactory, Proprioception, Tactile, Vestibular, and Visual. The ESP has been shown to discriminate children with sensory dysfunction from typically developing children (Parham & Ecker, 2002; Johnson-Ecker & Parham, 2000), and studies with children with autism are in progress. The Infant/Toddler Sensory Profile (Dunn, 2002) is a parent-report

with autism are in progress. The Infant/Toddler Sensory Profile (Dunn, 2002) is a parent-report questionnaire designed to evaluate sensory processing patterns in infants and toddlers (0–3 years). Criterion-referenced cut-scores are obtained whereby the raw scores can be compared to the performance of typical children. For children 0–6 months the questionnaire consists of 36 items, from which four quadrant scores (i.e., low registration, sensation seeking, sensory sensitivity, and sensation

four quadrant scores (i.e., low registration, sensation seeking, sensory sensitivity, and sensation avoiding) and one combined quadrant score (low threshold) can be calculated. For infants between 7 and 36 months the questionnaire consists of 48 items, from which five sensory processing section scores (auditory processing, visual processing, tactile processing, vestibular processing, and oral sensory processing), four quad- rant scores, and one combined quadrant score can be obtained. Growth

processing), four quad- rant scores, and one combined quadrant score can be obtained. Growth charts can also be constructed for sensation seeking, tactile processing, and oral sensory processing. One study indicated that the scores of chil- dren with autism and those with developmental delays were significantly different from those of typically developing children on this assessment (Rogers, Hepburn, & Wehner, 2003). The Sensory Experiences Questionnaire (SEQ; Baranek, 1999b; Baranek et al.,

& Wehner, 2003). The Sensory Experiences Questionnaire (SEQ; Baranek, 1999b; Baranek et al., 2006) is a parent-report questionnaire consisting of 35 items in its current research version. It was specifically designed to screen young chil- dren with autism and developmental delays with mental ages between 6 and 72 months. The SEQ can be used as a supplement to traditional developmental assessments that do not typically include evaluation of sen- sory processing functions. Raw scores for the full

that do not typically include evaluation of sen- sory processing functions. Raw scores for the full scale, as well as sub- scales for Hypo/Hyper-responsiveness to Social/Nonsocial sensory stim- uli and Sensory Modality Categories, can be derived and compared with the performance of typically developing children, children with develop- mental delays, and children with autism. Criterion-referenced cut-scores are provided. The SEQ has been evidenced to discriminate between chil- dren with autism

cut-scores are provided. The SEQ has been evidenced to discriminate between chil- dren with autism and developmental delays, as well as between children with autism and typically developing children (Baranek et al., 2006). The Sensory Processing Assessment for Young Children (SPA; Baranek, 1999c) was also designed specifically for infants and young children with autism and developmental delays from 9–62 months, as an observational companion to the SEQ. It is administered in a semistructured

from 9–62 months, as an observational companion to the SEQ. It is administered in a semistructured play for- mat and consists of four parts: Approach/Avoidance and Action Strat- egies with Novel Sensory Toys, Sensory Orienting, Sensory Habituation (repeated stimuli), and Stereotyped Behaviors. It contains both explor- atory tasks, during which the children interact with sensory toys, and spe- cific probes, administered unexpectedly, to judge reactions to sensory stimuli. Raw scores and

spe- cific probes, administered unexpectedly, to judge reactions to sensory stimuli. Raw scores and criterion-referenced scale scores are calculated, and validity studies are currently in progress. The Test of Sensory Function in Infants (TSFI; DeGangi & Greenspan, 1989) is an observational measure for infants between 4 and 18 months with sensory integrative dysfunction, especially those at risk for later learning disability. The TSFI consists of fives subtests (i.e., Reactivity to Tactile Deep

later learning disability. The TSFI consists of fives subtests (i.e., Reactivity to Tactile Deep Pressure, Adaptive Motor Function, Visual-tactile Integra- tion, Ocular-motor Control, Reactivity to Vestibular Stimulation) with items that utilize specific probes/stimuli to judge a behavioral response from the infant. Each subscale yields a criterion-referenced score specific for the four age groups (4–6, 7–9, 10–12, and 13–18 months). The sub- scales can be summed to calculate a total score. It

(4–6, 7–9, 10–12, and 13–18 months). The sub- scales can be summed to calculate a total score. It is more stable in identi- fying infants with sensory processing dysfunction at 10–18 months than in the younger age groups.  Case Vignette The preschool teacher is concerned that Aaron (introduced earlier in the chapter) does not engage in purposeful play on the playground. She notes that he tends to wander the fenced perimeter or sit on a bench under a tree. Aaron’s parents report that he plays

to wander the fenced perimeter or sit on a bench under a tree. Aaron’s parents report that he plays happily at their neighborhood playground, enjoying climbing up a short ladder and sliding down the slide. The therapist at Aaron’s preschool is con- sulted to determine ways to engage him more fully in playground activities. She observes him in both environments and notes a vari- ety of contextual differences potentially affecting his performance. Aaron’s motor skills are adequate to climb simple

potentially affecting his performance. Aaron’s motor skills are adequate to climb simple structures, but the preschool playground is more complex. It has many different play spaces/climbing structures, is encircled by a wire fence, and is noisy because of a large number of children playing at once. The small neighborhood playground does not have the distraction of a wired fence, provides one simple play structure, and has few other children present. In both situations, the activity is outdoor

play structure, and has few other children present. In both situations, the activity is outdoor play, but the physi- cal and social environments of the two playgrounds afford vastly dif- ferent levels of participation for Aaron. Given this assessment, the therapist is now better able to recommend a variety of appropriate and contextually relevant interventions. A standardized motor assess- ment was deemed unnecessary in this situation; however, the thera- pist chose to administer a

ment was deemed unnecessary in this situation; however, the thera- pist chose to administer a parent-report sensory processing assess- ment to gain a better understanding of potential sensory problems that may be generalizing to the playground environment.  INTERVENTION  Guiding Principles The multidisciplinary comprehensive assessment process ideally leads to the development of functional goals and meaningful outcomes for the child and family, as well as strategies for intervention.

goals and meaningful outcomes for the child and family, as well as strategies for intervention. Family-centered practices acknowledge the expertise, priorities, routines, and goals of the family (Dunst, 2002) and recommend collaboration among all members of the intervention team. Though the intervention focus may at times be on supporting changes in the skills and performance of the child with sensory–motor deficits, consideration is given to the family’s culture, val- ues, and methods of

sensory–motor deficits, consideration is given to the family’s culture, val- ues, and methods of orchestrating daily life. Ecological approaches sup- port a perspective whereby the context in which an activity occurs is seen as both affecting and being affected by the child engaged in that activity. This interaction (between the child and the physical or social environ- ment) may either support or hinder the child’s performance (Thurman, 1977). Thus, an ecological perspective allows both

or hinder the child’s performance (Thurman, 1977). Thus, an ecological perspective allows both intrinsic and external factors to be considered and supports the embedding of intervention strategies into daily life activities and natural environments to maximize the fit between child and environment, with a resultant enhancement of performance. As in the case of Aaron, discussed above, the therapist uses this ecological perspective, assessing a variety of child (e.g., sensory– motor or cognitive

uses this ecological perspective, assessing a variety of child (e.g., sensory– motor or cognitive capabilities), task (e.g., climbing on play structures), and environmental (e.g., sensory distractions, social expectations) vari- ables that are affecting Aaron’s ability to succeed on the playground in order to recommend interventions that are likely to work in this specific context.  Theoretical Models Used to Address Sensory–Motor Issues There are a number of theoretical models that may be used

Used to Address Sensory–Motor Issues There are a number of theoretical models that may be used to think about and guide interventions for children experiencing sensory–motor difficul- ties. These ways of thinking may be used in combination with one another, but should be chosen on the basis of the individual characteris- tics of the child and contexts involved. Several of the most common theo- retical models utilized by occupational and physical therapists for the treatment of sensory–motor

retical models utilized by occupational and physical therapists for the treatment of sensory–motor issues with young children with autism are presented below, with brief explanations.  Transactional Theories Transactional theory (see, e.g., Law et al., 1996) was alluded to in the sec- tion on assessment. This theory is consistent with the ecological perspec- tive and emphasizes the ongoing dynamics between the child, the activity, and the environment to create optimal performance under

dynamics between the child, the activity, and the environment to create optimal performance under well-matched conditions. The importance of transactional theory for sensory–motor issues lies in the opportunity to think broadly about the factors impacting the child’s performance, and to provide intervention that may target changes in the task and/or changes to the context, rather than relying only on remediation strategies that seek to make changes in the child’s sensory–motor functions

only on remediation strategies that seek to make changes in the child’s sensory–motor functions directly.  Dynamic Systems Dynamic systems theory (Smith & Thelen, 2003) similarly views the child as a highly complex organism in which self-organization and adaptation in all aspects of function are occurring constantly and simultaneously as a result of the demands of the environment and the organism’s own effort to meet those demands. Application of this theory to young children with autism

own effort to meet those demands. Application of this theory to young children with autism encourages a perspective in which the child is seen as capable of change, or learning, as a result of interactions with tasks and environ- ments that provide an appropriate level of challenge.  Motor Learning Theory Motor learning theory (Shumway-Cook & Woollacott, 2000) addresses the acquisition of and/or modification of movement and can be particularly useful in thinking about intervention for young

modification of movement and can be particularly useful in thinking about intervention for young children who have diffi- culty in the area of praxis (motor planning). With a desired outcome of increasing the child’s ability to perform motor activities successfully and in a variety of environments, intervention based on motor learning theory includes frequent opportunities for practice in natural settings, provision of meaningful feedback (including enhanced sensory input), use of cogni- tive

settings, provision of meaningful feedback (including enhanced sensory input), use of cogni- tive and/or language-based strategies, and a focus on generalization of skills.  Sensory Processing Theory Sensory integration (SI) theory, originally developed in the 1960s by A. Jean Ayres, is based on assumptions that processing and organization of sensory input influences a child’s motor functions, learning, and adaptive behavior. Classical sensory integration treatment utilizes prescribed sen- sory

and adaptive behavior. Classical sensory integration treatment utilizes prescribed sen- sory experiences (i.e., vestibular, proprioceptive, tactile) to enhance neu- ral processing, with an assumption that this processing will lead to improved behaviors and learning. This model spurred the development of a variety of remedial sensory-based treatments that have been subject to controversy (see Baranek, 2002, for a review of research in autism). Newer sensory processing models stress the

(see Baranek, 2002, for a review of research in autism). Newer sensory processing models stress the transactional effects of envi- ronmental affordances or challenges with the child’s sensory process- ing style (Dunn, 1997, 2002) and provide treatment recommendations beyond remediation of deficits. Dunn (1997, 2002) identifies four pat- terns of sensory processing (i.e., low registration, sensory seeking, sensory sensitivity, and sensation avoiding) that are produced by the interaction of

seeking, sensory sensitivity, and sensation avoiding) that are produced by the interaction of innate neurological thresholds (low and high) with the child’s behavioral responses (passive and active) to those thresholds. Baranek and col- leagues (2001) acknowledge the relevance of sensory thresholds (orienta- tion and avoidance) to a child’s ability to engage with the environment, but further suggest that an optimal level of engagement is also influenced by a variety of other intrinsic or

suggest that an optimal level of engagement is also influenced by a variety of other intrinsic or extrinsic variables, besides sensory threshold. These newer conceptualizations are compatible with transac- tional and dynamic systems theories, allowing for individualized interven- tions that include environmental adaptations and tasks accommodating sensory preferences or avoidances to optimize performance in daily rou- tines.  Coping Theory Coping theory is based on a view of function that is

in daily rou- tines.  Coping Theory Coping theory is based on a view of function that is defined as the ability to achieve emotional equilibrium after a new or challenging situation is encountered such that engagement in an activity can begin or continue (Olsen, 1999). Interventions based on coping theory seek to increase the child’s ability to confront difficult situations in a positive way, simulta- neously decreasing the amount of time a child spends withdrawing from or avoiding challenging

neously decreasing the amount of time a child spends withdrawing from or avoiding challenging situations. Application of this theory to young children with autism supports psychosocial interventions related to cop- ing with sensory processing deficits or motor challenges and developing resiliency in the face of such challenges.  Models of Service Delivery The ways in which interventions to address sensory–motor issues are put in place, and by whom, can vary greatly, depending on the setting in

sensory–motor issues are put in place, and by whom, can vary greatly, depending on the setting in which the child is participating. Service delivery models that are congru- ent with the use of natural physical and social environments, accommo- date daily activities and routines, and allow frequent opportunities for interventions to be implemented are typically considered best practice in early intervention (McWilliam, 1992). These integrated models of service delivery include the use of

intervention (McWilliam, 1992). These integrated models of service delivery include the use of collaborative consultation and embedded intervention. However, more direct (one-on-one) approaches may also be useful at times. Figure 5.1 provides a summary of various service delivery models and how they may be used in addressing the various sensory– motor needs of young children with autism.  Intervention Strategies Remediation, education, and modification are the three types of interven- tion most

Strategies Remediation, education, and modification are the three types of interven- tion most often used by therapists to support the participation of the young child with autism who may have specific sensory–motor deficits. Although the intended outcome of all of these types of intervention is to increase the fit between the child, his or her activities/routines, and envi- ronment, each type emphasizes a different focus of intervention. It is important to keep in mind that neurological

emphasizes a different focus of intervention. It is important to keep in mind that neurological maturation and repeated meaningful experiences play a role in successful adaptation to sensory– motor challenges for young children over the course of development, thus variability in outcomes is expected across individual children and at dif- ferent points in development.  Remediation Remediation strategies for sensory–motor deficits seek to promote change in the child’s performance and typically

for sensory–motor deficits seek to promote change in the child’s performance and typically include the provision of sensory– motor experiences to address deficits and/or the teaching of new sensory– motor skills. These interventions aim to effect relatively permanent changes in specific capacities targeted for intervention (e.g., fine motor coordination, praxis, tactile processing and discrimination, etc.) and, it is hoped, allow those capacities to generalize to appropriate contexts, activi-

etc.) and, it is hoped, allow those capacities to generalize to appropriate contexts, activi- ties, and routines. General teaching strategies may include modeling, prompting and time delay, feedback (including sensory input), practice/ repetition, peer mediation, chaining, and scaffolding. Although these strategies are supported by a body of empirical evidence (Wolery, 1994) in early childhood special education, more research about their efficacy for children with autism is warranted (Wolery,

education, more research about their efficacy for children with autism is warranted (Wolery, 2000). Studies utilizing these strategies specifically to address sensory–motor issues, particularly those that address a combination of techniques to support performance, are also needed. We return to the case of Aaron to exemplify remedial interventions for some of his newly emerging sensory–motor difficulties on the playground.  Case Vignette Aaron, now 3 years old, is demonstrating difficulties with

on the playground.  Case Vignette Aaron, now 3 years old, is demonstrating difficulties with praxis, par- ticularly in playground activities that require whole-body movement planning. For example, Aaron tries several unsuccessful methods of getting into a wagon to take a ride with his peers. His desire and intent are clear, but the planning and execution of this task are hin- dered by poor body scheme, difficulties in sequencing a series of movements, and lack of experience. The therapist tries

difficulties in sequencing a series of movements, and lack of experience. The therapist tries some remediation strategies. First, she uses enhanced sensory feedback, holding Aaron’s hips firmly and pressing toward the ground for the purpose of activating proprioceptors to improve body awareness. She taps loudly on the edge of the wagon, and then gently on the back of his hand, while providing simultaneous verbal prompts. Once this initial positioning is accomplished, she employs a brief time

verbal prompts. Once this initial positioning is accomplished, she employs a brief time delay to see if Aaron can figure out what to do next with his body (i.e., motor plan). She feels his next attempt to move and realizes that it will move him in the wrong direction, so she continues to give enhanced sen- sory cues on his body and the wagon, simple verbal prompts, and opportunities for Aaron to initiate the next movement. The therapist continues to scaffold and chain a series of movements

to initiate the next movement. The therapist continues to scaffold and chain a series of movements until he gets in the wagon successfully. After a ride around the track, she encourages Aaron to get out and give another child a turn, which creates both a visual model and an opportunity for requesting and practicing more rides in the wagon. This example demonstrates a remediation approach utilizing several theoretical models and providing intervention in the context of the natu- ral environment.

several theoretical models and providing intervention in the context of the natu- ral environment. Other types of remediation approaches, such as classical sensory integration treatment, may be conducted in clinical settings with specialized equipment (swings, therapy balls, etc.), whereby sensory input is controlled in terms of its type, frequency, duration, intensity, novelty, and complexity. Although there is substantial evidence of the existence of sensory processing difficulties in

Although there is substantial evidence of the existence of sensory processing difficulties in children with autism, sensory integra- tion treatments have been criticized for lacking empirical support and for inconsistencies with current understandings of neurological principles. A number of related intervention approaches have since evolved. Some ther- apists have prescribed a “sensory diet,” based on the idea that an individ- ually designed set of sensory activities integrated across the

based on the idea that an individ- ually designed set of sensory activities integrated across the child’s day can be helpful to meet the child’s sensory needs. For example, trampoline jumping may be used to increase arousal prior to performing homework activities, or soft brushing of the skin surface may be used to decrease tactile defensiveness. Other sensory programs incorporate cognitive- behavioral and language-based strategies for older or higher-functioning children to further support

and language-based strategies for older or higher-functioning children to further support self-regulatory behaviors. A variety of anec- dotal data report that some families have found the various sensory integration-based treatments beneficial, at least for preschool-age chil- dren with autism and related conditions. However, it is unclear as to which aspects of the intervention (e.g., sensory input, play coaching, opportunities for enhanced social interaction, positive reinforcement,

input, play coaching, opportunities for enhanced social interaction, positive reinforcement, therapeutic relationship with families, etc.) may actually be responsible for the beneficial changes, inasmuch as good controlled studies are lack- ing (see Baranek, 2002, for a detailed review). Other controversial remediation methods are aimed at improving processing in a specific sen- sory modality such as audition, vision, or touch (e.g., Auditory Integra- tion Therapy, Listening Approach, Prism

such as audition, vision, or touch (e.g., Auditory Integra- tion Therapy, Listening Approach, Prism Lenses, Hug Machine, weighted vests, etc.) for the purpose of effecting larger behavioral or developmen- tal changes. Although the general principles of attending to sensory needs and preferences are salient for young children with autism and their families, it must be emphasized that there are no studies measuring the efficacy or safety of many of these alternative treatments with very young

no studies measuring the efficacy or safety of many of these alternative treatments with very young children with autism. Thus, therapeutic decisions need to be indi- vidualized and kept consistent with best clinical practice guidelines for early intervention.  FIGURE 5.1. Models of service delivery for implementing sensory and motor intervention strategies for young children with autism.

| MODEL                                           | SOCIAL CONTEXT                                                                                                                                                                                             | PHYSICAL CONTEXT                                                                                                   | APPLICATION

|

|-------------------------------------------------|------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|--------------------------------------------------------------------------------------------------------------------|------------------------------------------------------------------------------------------------------------------------------

----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|

| **DIRECT**                                      |                                                                                                                                                                                                            |                                                                                                                    |

|

| Individual                                      | Therapist is primary adult. Teacher and/or parent typically not present, though may observe. Other children are not present.                                                                               | Isolated space in home, school, or clinic setting (e.g., therapy room) or space not in use by others.                | To assess performance capacities in controlled environment. To support initial skill acquisition. Use of this model should

in controlled environment. To support initial skill acquisition. Use of this model should be purposeful, planned, and short-term.                                                                                                |

| Small group                                     | Therapist is primary adult. Teacher and/or parent typically not present, though may suggest which peers/ siblings should be included. Small group of children, to provide social context, modeling, opportunities for peer-mediated strategies. | Isolated space in home, school, or clinic setting (e.g., therapy room) or space not in use by others.                | To control social environment, teach peers modeling and other strategies, allow for

| To control social environment, teach peers modeling and other strategies, allow for practice in controlled environment before taking into larger social or physical environment. Use of this model should be purposeful, planned, and short-term.                 |

| One-on-one in natural environment               | Therapist directed or supported, with activity not necessarily related to current activity of others. Parent/teacher interacts with other children, may get/provide information later, may observe incidentally. Other children may be present in environment, but not interacting with target child. | In classroom or other larger natural environment.                                                                    | To support child’s presence in

| To support child’s presence in natural environment, but without immediate demand for engagement in same activity as others. To assess child’s responses to specific environment when activity is motivating (e.g., child initiated). Use of this model should be purposeful, planned, and short-term. |

| Group activity                                  | Therapist directed or supported, but teacher/parent may help with planning and assist in conducting group. Other children participate in activity; may provide models for target child or use other methods of supporting intervention. | In classroom or other larger natural environment.                                                                    | To assess performance of child in natural social contexts. To support outcomes related to

| To assess performance of child in natural social contexts. To support outcomes related to imitation, social interaction, communication, group membership and participation.                                                                                     |

| **EMBEDDED**                                    |                                                                                                                                                                                                            |                                                                                                                    |

|

| Individual within regular activity or routine   | Teachers, parents, therapists share responsibility for developing and implementing intervention strategies. Other children are present and engaged in regular activities and routines with target child.     | In classroom or other larger natural environment.                                                                    | To support all aspects of participation, social interaction, and independence in natural environments with multiple

of participation, social interaction, and independence in natural environments with multiple opportunities for practice and feedback.                                                                                                     |

| **CONSULTATIVE**                                |                                                                                                                                                                                                            |                                                                                                                    |

|

| Expert                                          | Adult in “expert” role provides information, suggestions, resources, and direction related to area of need identified by others. Others exchange information with the therapist, give and receive feedback. Other children may be present, if occurring in child environment, but they are not involved in process. | May occur in child environment, or separate meeting venue.                                                         | To broaden team

separate meeting venue.                                                         | To broaden team perspectives, use pertinent resources, consider “second opinions,” and develop increased knowledge for all team members, especially when confronted with difficult situations.                                                                       |

| Collaborative                                   | All members of intervention team exchange information and expertise and work together to plan future interventions. Other children may be present, if occurring in child environment, but they are not involved in process. | May occur in child environment, or separate meeting venue.                                                         | To support all aspects of participation, social interaction, and independence in natural environments with

all aspects of participation, social interaction, and independence in natural environments with multiple opportunities for practice and feedback.                                                                                                     |

Education Educational approaches seek to increase the knowledge and understanding of those around the child (parents, teachers, siblings, classmates, etc.) regard- ing that child’s particular sensory–motor needs and how those needs impact engagement and success in a variety of daily activities. Providing consultation, information, and resources to others involved with the child has at least two purposes: (1) to influence change in the expectations and behaviors of others, thus increasing the

purposes: (1) to influence change in the expectations and behaviors of others, thus increasing the fit between the child and his or her social environment, and (2) to support the use of a collaborative model, as all those concerned about the needs of the child develop a com- mon base of knowledge and can support one another in the implementa- tion of intervention strategies.  Case Vignette As the therapist collaborates with Aaron’s teacher, she educates the teacher about sensory processing and

therapist collaborates with Aaron’s teacher, she educates the teacher about sensory processing and its relationship to praxis, using examples of Aaron getting into his wagon. The teacher agrees to sup- port Aaron’s performance by using the same intervention strategies used by his therapist. Aaron gets much practice getting into the wagon and progressively decreases his need for sensory cues and prompting over the next few days. By the end of the week, Aaron is able to get into the wagon on his

over the next few days. By the end of the week, Aaron is able to get into the wagon on his own. Remarkably, his mother reports that last night, for the first time, Aaron had the confidence to get into the bathtub on his own, showing generalization of the motor planning skills learned on the playground.  Modification Approaches based on modification seek to alter or adapt the context or the activity, or to provide compensatory mechanisms that support the participa- tion of the child. These

or to provide compensatory mechanisms that support the participa- tion of the child. These strategies are many and varied and are often used because they lend themselves well to embedded models of service deliv- ery in natural environments. Although some have empirical support for their use for children with autism, research literature related specifically to the use of modification strategies in addressing sensory–motor con- cerns for this population is scarce. Tasks and environments may be

in addressing sensory–motor con- cerns for this population is scarce. Tasks and environments may be modi- fied specifically to provide sensory input or motor affordances that match the child’s particular needs. For instance, for a child with sensory-seeking behaviors, activities may be intensified in their sensory qualities (e.g., run- ning errands, moving chairs, washing tables, etc.), and appropriate chan- nels provided for needed stimulation (e.g., alternation of active and pas- sive

appropriate chan- nels provided for needed stimulation (e.g., alternation of active and pas- sive activities in daily routines). For a child with hyporesponsiveness, specific sensory stimuli (e.g., flashing a light, touching a hand) can be superimposed on existing activities to increase the likelihood that the child will orient initially or maintain engagement. Task modifications may also include the use of priming techniques, visual supports, and social stories, among others. These strategies

the use of priming techniques, visual supports, and social stories, among others. These strategies allow the child with autism to be prepared for, understand, and have an appro- priate response to daily life events and the sensory–motor demands pre- sented by those events. Priming (Dunn, Saiter, & Rinner, 2002) is a strat- egy used to familiarize the child with upcoming activities, without a demand for performance. Exposure, exploration, and accommodation are the goals of this strategy, and no

for performance. Exposure, exploration, and accommodation are the goals of this strategy, and no attempts at “teaching” are made dur- ing priming. Although the whole task may not be modified, this method adapts the process of task initiation, thus providing greater predictability and time allowances. Empirical evidence for the use of priming to address sensory–motor issues is lacking, but several studies have shown the bene- fits of priming for decreasing problems behaviors and increasing pro-

studies have shown the bene- fits of priming for decreasing problems behaviors and increasing pro- social behaviors in preschoolers with autism (Koegel, Koegel, Frea, & Green-Hopkins, 2003; Sawyer, Luiselli, Ricciardi, & Gower, 2005).  Case Vignette Despite a general predisposition toward hyporesponsiveness to many sensory experiences, Aaron demonstrates hyperresponsiveness to certain auditory experiences, like exposure to noisy mechanical tools. Prior to a classroom cooking activity in which

like exposure to noisy mechanical tools. Prior to a classroom cooking activity in which an electric hand mixer was to be used, the therapist and the teacher showed Aaron the mixer (not turned on), the bowl in which the batter would be mixed, and a picture of the muffins that would result. Aaron asked to hold the mixer, and he examined it carefully, including the on/off switch. The teacher prepared him for the sensory experience by telling him that the mixer would make noise when the switch was

him for the sensory experience by telling him that the mixer would make noise when the switch was turned on. When the time came for the cooking activity, Aaron was permitted to choose where in the room he wanted to stand. Each child was given a turn with the mixer, counting to 10 before turning it off again. As each child took a turn, Aaron watched and came closer to the cook- ing table. When offered a turn, he held the mixer, turned it on him- self, and mixed batter to the count of 10. Visual

a turn, he held the mixer, turned it on him- self, and mixed batter to the count of 10. Visual supports may include the use of several types of pictures (pho- tos, line drawings, etc.), as well as objects, to assist the child in the predic-

tion, understanding, and response aspects of managing daily events (Bryan & Gast, 2000; Dunn et al., 2002). These methods may help gener- ate ideas for play activities, prepare for a sequence of events, make transi- tions easier, and provide more predictability and control over aversive fea- tures in the environment, thus providing supports for deficits in sensory processing as well as praxis in young children with autism. For example, in the case of Aaron, the teacher may design a book of “Fun

children with autism. For example, in the case of Aaron, the teacher may design a book of “Fun Playground Ideas” to help him choose an activity each day and outline a picture sequence of how the task can be physically executed. Social stories were originally designed to support the social interactions of children with autism (Gray & Garand, 1993; Kuoch & Mirenda, 2003), but have been adapted to serve in a variety of situations (Baltazar & Bax, 2004; Brownell, 2002) and may have applicability to

in a variety of situations (Baltazar & Bax, 2004; Brownell, 2002) and may have applicability to intervening with sensory–motor issues. In the case of Aaron, the therapist may construct a story (e.g., “Aaron and His Friends Ride in the Wagon”), describing events in detail to help him understand what will or should happen, what his role is, and how to respond or enact that role. These stories assist in the preparation of managing daily life events (e.g., stressful situations with loud mechani-

in the preparation of managing daily life events (e.g., stressful situations with loud mechani- cal noises) and are read with the child prior to the actual event. Modifications that specifically target the environment (as opposed to the task) may include setting up a “home base” (i.e., a location apart from the child’s routine environment that allows him or her to plan, regroup, or recover) (Dunn et al., 2002). The emphasis in using a home base should be on the positive aspects of recovering

et al., 2002). The emphasis in using a home base should be on the positive aspects of recovering from stressful situations, rather than on more punitive concepts of “time-out” or providing a place for the child to avoid participation. In addition, arranging aspects of the built and natural environment to support various types of sensory–motor experiences, engineering the proximity of peers and adults, and attending to the temporal aspects of performance, including routines, schedules, and

adults, and attending to the temporal aspects of performance, including routines, schedules, and habitual behaviors, may be useful in home or early intervention set- tings. The general arrangement of the physical environment can be planned to make materials and tools more or less available, create paths, or invite particular activities, for example. Few studies target arrangement of the physical environment as the primary intervention strategy, but one study (Duker & Rasing, 1989) found that

environment as the primary intervention strategy, but one study (Duker & Rasing, 1989) found that redesigning a classroom environ- ment increased on-task behaviors and decreased the incidence of self- stimulation and inactivity for three adolescent/young adult males with autism. The social contexts can also influence a child’s sensory experi- ences, and thus adult- or peer-mediated strategies may be helpful in addressing specific sensory–motor issues and increasing overall participa- tion in

be helpful in addressing specific sensory–motor issues and increasing overall participa- tion in meaningful activities. For example, a child with sensory hypo- responsiveness may be assigned several partners to dance with to music at the beginning of circle time in order to increase her arousal level and gen- eral responsiveness and provide role models for this sensory–motor activ- ity. In contrast, the child with hyperresponsiveness may need a reduction in the number of peers (and therefore

the child with hyperresponsiveness may need a reduction in the number of peers (and therefore the likelihood of noise and unex- pected touch) while playing in the block area of the classroom. For a child with praxis difficulties, peers and adults can be used as “sources of infor- mation” to help the child generate ideas for new activities. Adaptations to the temporal context may be orchestrated when a child’s patterns of sen- sory processing and circadian rhythms (e.g., eating, sleeping, waking

a child’s patterns of sen- sory processing and circadian rhythms (e.g., eating, sleeping, waking cycles) do not fit neatly with existing routines and expectations. While promoting flexibility coping mechanisms, caregivers may find that chang- ing the order in which some daily events occur also increases the ability of the child to participate in those events.  Case Vignette Benjamin, a 2-year-old boy with hyperresponsiveness to tactile sensa- tion, wakes up hungry. He fights his parent’s

boy with hyperresponsiveness to tactile sensa- tion, wakes up hungry. He fights his parent’s attempts to change his diaper and dress him (activities that involve high levels of tactile input), which are part of his usual routine. Benjamin runs from the room in search of breakfast bars that he knows are in the pantry downstairs. Benjamin’s parents, discontented with the amount of effort needed to accomplish the morning routine, consult with his early interventionist, who suggests altering the

accomplish the morning routine, consult with his early interventionist, who suggests altering the temporal order of morning activities to better fit with his physiological state—Benjamin is allowed to get a breakfast bar prior to beginning the more stressful grooming activities. The interventionist also consults on adaptations to the grooming routine (e.g., use firm pressure when applying lotion in smooth, even strokes) to make it more tolerable for Benjamin and his parents.  CONCLUSION A

in smooth, even strokes) to make it more tolerable for Benjamin and his parents.  CONCLUSION A knowledge of sensory–motor features, their prevalence, and develop- mental trajectories in young children with autism is critical to clinical assessment and effective early intervention. Meaningful and repeated sensory–motor experiences during the early infant and toddler years are among the important building blocks for later development and learning. Although more research is needed, studies have

building blocks for later development and learning. Although more research is needed, studies have confirmed the presence of a variety of sensory processing difficulties, qualitative movement differ- ences, and repetitive motor behaviors that manifest very early in children with autism and create challenges for teachers and families. It is not clear as to which of these features are specific to autism and which may be more related to developmental disorders in general. Professionals work- ing

autism and which may be more related to developmental disorders in general. Professionals work- ing with young children with autism must consider the individualized nature of sensory–motor experiences and the transaction of the child’s intrinsic capacities with the task and environmental features in both the assessment and intervention processes. Best practices in early intervention suggest providing interventions in the context of naturalistic environ- ments and with multiple opportunities.

interventions in the context of naturalistic environ- ments and with multiple opportunities. Such practices also utilize a col- laborative team approach, whereby teachers, therapists, and families are all viewed as contributing important expertise to the child’s intervention plan. Studies on the efficacy of various sensory–motor interventions with very young children with autism are needed, although a variety of sound theoretical approaches and empirically validated strategies are available in

a variety of sound theoretical approaches and empirically validated strategies are available in the general early intervention literature that may be applied to this population. A variety of models (e.g., sensory processing, motor learn- ing, cognitive-behavioral, psychosocial, and coping) and strategies (e.g., remediation, education, and task and environmental modification) are considered when formulating individualized goals and outcomes for a young child experiencing sensory–motor

when formulating individualized goals and outcomes for a young child experiencing sensory–motor difficulties that interfere with daily routines and social participation.  ACKNOWLEDGMENTS We thank the staff, children, and families who participated in our clinical prac-

tices and research programs and contributed to examples used in this chapter. All
names in the case examples and interviews were de-identified and fictionalized to
preserve confidentiality. Informed consent was obtained for the use of quotes. We
also acknowledge partial funding from the National Institute of Child Health and
Human Development (Grant No. R01-HD42168) to the Sensory Experiences Pro- ject at the University of North Carolina at Chapel Hill that enabled the compila-

tion of literature and data for this chapter.  Case Studies of Infants First Evaluated in the Second Year of Life AMI KLIN CELINE SAULNIER KATARZYNA CHAWARSKA FRED R. VOLKMAR  Only 20 years ago, centers specializing in autism spectrum disorders (ASD) rarely evaluated children under the age of 4 years (Siegel, Piner, Eschler, & Elliott, 1988). Nowadays, referrals in the second year of life are commonplace (Chawarska et al., 2007), and knowledge resulting from direct observations of infants

commonplace (Chawarska et al., 2007), and knowledge resulting from direct observations of infants subsequently found to have ASD is accruing at a fast pace (Zwaigenbaum et al., 2005). Longitudinal studies of children with ASD first seen in the second and third years of life have begun to clarify issues of developmental trajectories (Lord, 1995; Lord et al., 2006), and promising early predictors of outcome have been identified (Charman et al., 2005). And yet the extreme variability in syndrome

of outcome have been identified (Charman et al., 2005). And yet the extreme variability in syndrome mani- festation and developmental course continues to be among the most chal- lenging factors in autism research (Volkmar, Lord, Bailey, Schultz, & Klin, 2004). Nowhere is this challenge more clearly illustrated than in individual cases of infants with ASD followed prospectively during their preschool years. Anxious parents invariably ask examiners what to expect from the future. Experienced

years. Anxious parents invariably ask examiners what to expect from the future. Experienced clinicians are aware of the limitations of current knowl- edge to predict the developmental course of individual children. They have to temper any predictions based on group studies, as they have seen multi- ple permutations of concerning and promising profiles in infants turn into different levels of ability and disability when these children reach school age. And given the premium associated with early

and disability when these children reach school age. And given the premium associated with early intervention in maximiz- ing outcome (National Research Council, 2001), it is still very disappointing that treatments cannot be tailored to individual profiles on the basis of solid knowledge, prescribing the best way of advancing social, communicative, and adaptive skills for one child at a time. The purpose of this chapter is to present three rather different cases of children with ASD first seen

purpose of this chapter is to present three rather different cases of children with ASD first seen in the second year of life and then fol- lowed up until the age of 4 years. Each one was assessed three times and all completed very similar comprehensive developmental disabilities eval- uations. We summarize the trajectory of their developmental, speech– language, adaptive, and diagnostic profiles in each one of these evalua- tions. Developmental status was measured with the Mullen Scales of

in each one of these evalua- tions. Developmental status was measured with the Mullen Scales of Early Learning (MSEL; Mullen, 1995); speech-language assessments included parent reports such as the MacArthur–Bates Communicative Development Inventory (Fenson, 1989) and direct measures such as the Communication and Symbolic Behavior Scales—Developmental Profile (CSBS-DP; Wetherby & Prizant, 1993) and the Reynell Developmental Language Scales—III (Edwards et al., 1999); adaptive functioning was

and the Reynell Developmental Language Scales—III (Edwards et al., 1999); adaptive functioning was assessed with the Vineland Adaptive Behavior Scales, Expanded Edition (VABS; Sparrow, Balla, & Cicchetti, 1984); and diagnostic assessment included a parent interview—the Autism Diagnostic Interview—Revised (Rutter, LeCouteur, & Lord, 2003), direct observation—the Autism Diagnostic Observation Schedule–Generic, Modules 1 and 2 (ADOS-G; Lord, Rutter, DiLavore, & Risi, 1999), and a consensual

Schedule–Generic, Modules 1 and 2 (ADOS-G; Lord, Rutter, DiLavore, & Risi, 1999), and a consensual diagnosis formulated by at least two experienced clinicians. These three cases illustrate, among other things, (1) how profiles of development in infants that share many similarities may result in exceed- ingly different outcomes; (2) how the abrupt emergence of language may dramatically change rate of progress; (3) how language by itself does not guarantee successful social and communicative

rate of progress; (3) how language by itself does not guarantee successful social and communicative adaptation; and (4) how little we could predict about these children on the basis of knowledge of their first years of life, or even on the basis of their first comprehensive assessments carried out at 15, 18, and 20 months, respectively, for the three children. The names used in these cases are fictitious.  THE CASE OF “HELEN” Helen was evaluated at the ages of 15, 34, and 50 months. A more com-

THE CASE OF “HELEN” Helen was evaluated at the ages of 15, 34, and 50 months. A more com- prehensive description of her early profile is provided elsewhere (Klin et al., 2004). From the time of her initial evaluation, she presented with severe language and social communication deficits that persisted through- out her early childhood. In contrast, her nonverbal cognitive and fine motor skills were at age level at 15 months, but slowed considerably over time, resulting in intellectual impairment

at age level at 15 months, but slowed considerably over time, resulting in intellectual impairment by the age of 50 months (and severe intellectual disability as she grew older). Scores on diagnostic instrumentation and clinical diagnosis were consistent with autism in all three evaluations. Neither her parents nor her attentive pediatrician had concerns about her development in the first year of life.  Early Developmental History Helen was born after a pregnancy complicated by thyroid disease.

life.  Early Developmental History Helen was born after a pregnancy complicated by thyroid disease. After delivery, she was kept in a newborn special care unit for a short period of time because of low blood sugar, but she did well after discharge. Mile- stones were grossly on time. She smiled at 3 weeks of age, sat at 4 months, crawled at 6 months, and walked at 12 months. By parental report, at 12 months she was saying words such as “hi,” “baby,” “mommy,” and “daddy.” Helen’s pediatrician

at 12 months she was saying words such as “hi,” “baby,” “mommy,” and “daddy.” Helen’s pediatrician followed her closely because her older brother had been diagnosed with autism by our group. Shortly after 12 months, Helen stopped vocalizing and became increasingly less socially engaged. At 15 months, she developed an aversion to bright lights and loud noises. Con- cerned about what was perceived as her deteriorating development, her parents sought a developmental disabilities evaluation.

as her deteriorating development, her parents sought a developmental disabilities evaluation.  Family and Medical History As noted, Helen’s brother had been diagnosed with a prototypical form of autism a short time before her birth. Otherwise, there was no family his- tory of autism or developmental or psychiatric disability in the immediate or extended family. Medically, with the exception of four ear infections within a span of 2 or 3 months between 12 and 15 months, she had been entirely

four ear infections within a span of 2 or 3 months between 12 and 15 months, she had been entirely healthy. Her parents had initially associated her loss of skills to the ear infections. In genetic and neurological examination, Helen was found to be macrocephalic, but this was a family trait. And yet Helen’s head circumference went from the 50th percentile at 6 months to above the 95th percentile at 9 months, stabilizing thereafter. Genetic screening and neuroimaging tests were noncontributory

at 9 months, stabilizing thereafter. Genetic screening and neuroimaging tests were noncontributory to the diagnostic process.  Intervention History At about 16 months, Helen began to receive speech–language therapy for 1 hour three times per week and occupational therapy for 1 hour per week. She also received close to 8 hours per week of therapy based on applied behavior analysis (ABA) and attended a play group for about 1 hour twice per week. All of these services were gradually increased in

a play group for about 1 hour twice per week. All of these services were gradually increased in intensity and were maintained after she transitioned to the school system. At 50 months, her program included an ABA setting for a full morning five times per week, a mainstream preschool environment in the after- noon that included “pull-out” occupational therapy and speech–language services, and work with an educational specialist at home after school for about 2 hours four to five times per week.

with an educational specialist at home after school for about 2 hours four to five times per week.  Assessment At all three time points, Helen was administered the MSEL, the VABS, the ADI-R, and the ADOS-G (Module 1 for the three assessments).  Developmental Profile During her initial evaluation at 15 months, Helen’s scores were at age level on nonverbal problem-solving skills (“visual reception”; e.g., func- tional use of objects, object permanence, emerging shape discrimination skills) and

e.g., func- tional use of objects, object permanence, emerging shape discrimination skills) and fine and gross motor skills (e.g., eye–hand coordination, scrib- bling in imitation, running, throwing a ball). In contrast, she had severe deficits in language development, with delays of 6–8 months in receptive and expressive skills, respectively. At 34 months she had made steady but slow progress in nonverbal cognitive and fine motor skills, resulting in delays of 12–14 months. She continued to

in nonverbal cognitive and fine motor skills, resulting in delays of 12–14 months. She continued to have severe language deficits, with delays of 21–23 months. By the third evaluation, there was progress in language but slowing down of nonverbal reasoning and fine motor skills. At 50 months, she continued to show delays in development, rang- ing from 19 to 29 months, with the most severe deficits in expressive lan- guage. Figure 6.1 (“Helen”) illustrates her rate of progress from 15 to 50

in expressive lan- guage. Figure 6.1 (“Helen”) illustrates her rate of progress from 15 to 50 months of age.  Speech, Language, and Communication Profile At 15 months, Helen displayed no conventional or communicative ges- tures. She at times pulled the examiner’s hand to execute a desired action. If left by herself, Helen was extremely isolated. She could seek her par- ents’ contact when distressed, but not often. She could respond to verbal directions only in the presence of exaggerated visual

but not often. She could respond to verbal directions only in the presence of exaggerated visual cues, or following predictable routines. Her vocalizations consisted of primarily nonword sounds, and they were not directed at another person. At 34 months, her presentation was virtually unchanged. She did not orient spontaneously to unfamiliar adults, but at times she sought the proximity of her parents. Her vocalizations, smiles, and gestures occurred primarily when she was watching herself in a

Her vocalizations, smiles, and gestures occurred primarily when she was watching herself in a mirror. It was very difficult to engage her in imita- tive games, but she liked singing to herself. All communication functions were severely impaired, including nonverbal gestures, shared attention, visual engagement, and eye contact. She imitated some sounds but only a handful of words, although she could sing a nursery rhyme from begin- ning to end. Attention to language in general was extremely

could sing a nursery rhyme from begin- ning to end. Attention to language in general was extremely limited. At 50 months, Helen had learned many words, but she was much more likely to label objects or figures than to use them in communicative contexts (e.g., making a request from an adult). She could follow simple directions containing two attributes (e.g., “show me the red car”), but could not understand sentences that contained order or causation (e.g., “the baby pushes the mommy”). When a

understand sentences that contained order or causation (e.g., “the baby pushes the mommy”). When a word was presented to her in the context of a sentence, she was much less likely to understand it than when the word was given to her in isolation (e.g., a single word paired to an object, action, or figure). In fact, her ability to label pictures in isolation was close to age level. But she often had nonmeaningful associations that made it difficult for others to understand her (e.g., “thumb” for

nonmeaningful associations that made it difficult for others to understand her (e.g., “thumb” for “fingers” more generally; “couch” for “chair”). She could use a handful of simple signs for requests (e.g., for “more” or “stop”). In summary, with the excep- tion of some isolated areas of strength such as a single-word vocabulary, Helen made steady but very slow progress in speech and language, and particularly in communication development.  Adaptive Functioning At 15 months, Helen showed severe

particularly in communication development.  Adaptive Functioning At 15 months, Helen showed severe delays in socialization and expressive language skills, with relative strengths in receptive language and motor skills. Over the next 35 months, her rate of progress in language, interper- sonal, and play skills was extremely slow, and by 50 months she had pro- found delays in her ability to use language and social skills consistently in real-life settings. Motor skills showed slow but steady

language and social skills consistently in real-life settings. Motor skills showed slow but steady progress, but by 50 months they were also lagging age expectations by some 16 months. Interestingly, beginning sometime before her second evaluation, Helen became fascinated with letters and numbers. This is reflected in her “written” score (knowledge of letters and numbers, and “readiness” or preacademic skills). And by the time she was 50 months old, her reading abilities in fact exceeded her

skills). And by the time she was 50 months old, her reading abilities in fact exceeded her chronological age by more than 20 months. In other words, she was reading (i.e., decoding graphemes) almost like a 6-year-old despite her severe cognitive and language deficits. Her under- standing, however, was very limited. Figure 6.2 (“Helen”) illustrates her rates of growth in adaptive functioning from 15 to 50 months.  Diagnostic Presentation At 15 months, Helen was extremely self-isolated. If left

15 to 50 months.  Diagnostic Presentation At 15 months, Helen was extremely self-isolated. If left to her own devices, she perseverated in exploration of cause–effect toys (e.g., blocks, pop-up toys) and objects with special textures, ignoring others’ bids for engage- ment. Eye contact was infrequent and could not be elicited in a predict- able manner. Her smiles were mostly in response to her own actions (e.g., flicking a doll’s eye) or in response to sensory experiences (e.g., with lights,

own actions (e.g., flicking a doll’s eye) or in response to sensory experiences (e.g., with lights, shiny objects). She could not be engaged in anticipatory games (e.g., “peek-a-boo”). If an adult intruded upon her field of vision, she typi- cally focused on the periphery (e.g., hair, chin) of the approaching adult’s head or overfixated on the adult’s mouth. She did not show any interest in miniatures or representational toys. When frustrated, she made high- pitched sounds that were

in miniatures or representational toys. When frustrated, she made high- pitched sounds that were self-stimulatory rather than communicative. She did not use unfamiliar adults or her parents to get things she wanted, and she was not sensitive to or use pointing or other gestures. She exhibited a number of stereotypic behaviors, including hand flapping and posturing of her fingers. She was acutely aware of visual details in the environment (e.g., finding a piece of candy some 5 feet away) and was

of visual details in the environment (e.g., finding a piece of candy some 5 feet away) and was easily frightened by noises or novel events (e.g., the noise of a balloon being inflated). Helen’s presentation at 34 months was virtually unchanged. Her vocal- izations consisted primarily of high-pitched sounds and cries. She had no words or word approximations. The intonation of her vocalizations had a self-stimulatory quality (e.g., singsong sounds made to herself rather than as part of

had a self-stimulatory quality (e.g., singsong sounds made to herself rather than as part of communication with others). She liked to verbally label objects, but did not use any words to request, protest, or otherwise share an experience. She was best engaged by her parents in the context of “rough-and-tumble” routines, when she would smile and enjoy the movement. Her facial expres- sions, however, were rarely directed at others, reflecting instead her sense of contentment during the

however, were rarely directed at others, reflecting instead her sense of contentment during the exploration of an object, when looking at herself in the mirror, or when otherwise engaged in self-stimulatory behaviors. Her sensory-seeking behaviors and motor mannerisms increased markedly between the first and second evaluations. By 50 months, Helen’s presentation had changed somewhat. She was now much more able to follow activities that were imposed by the exam- iner, was less likely to shift

much more able to follow activities that were imposed by the exam- iner, was less likely to shift attention fleetingly from object to object, and could tolerate working with an adult for longer periods of time. Self- injurious behaviors shown previously when demands were placed on her had diminished considerably. She began to use words for the purpose of making familiar requests and could pair them with pointing. These abili- ties had been the focus of much of her therapy by then. Verbal

them with pointing. These abili- ties had been the focus of much of her therapy by then. Verbal utterances were primarily limited to single words, and many of them involved stereo- typic language or self-talk. Intonation was very flat, and she now exhib- ited immediate echolalia. In less structured, predictable, or familiar routines, however, Helen’s social and communication presentation still reflected a marked degree of self-isolation and independence. She was not likely to seek contact with

a marked degree of self-isolation and independence. She was not likely to seek contact with others, appeared confused when ap- proached by others in verbal or nonverbal ways if this was not part of her learned repertoire, and continued to be drawn to object manipulation or cause–effect routines rather than representational toys or symbolic play with others.  Summary Helen may have developed well until about 12 months of age, although we were unable to confirm this directly (e.g., using

well until about 12 months of age, although we were unable to confirm this directly (e.g., using videotapes made during her first year of life). By the time of her first evaluation, however, she had a prototypical autistic presentation that remained stable. And although most areas of social and communicative development were already severely impaired at 15 months, her nonverbal cognitive and fine motor skills were close to age level. By the time of her third evaluation, she exhibited marked

motor skills were close to age level. By the time of her third evaluation, she exhibited marked developmental delays in all domains, which were particularly severe in the areas of socialization and communication skills. Despite a great deal of treatment and intervention, her gains were only modest. In contrast to exhibiting these severe disabilities, she developed a fascination with letters and numbers, and by 50 months of age she had reading decoding skills that exceeded her chronological age

and by 50 months of age she had reading decoding skills that exceeded her chronological age by almost 1½ years.  FIGURE 6.1. Age-equivalent scores on the Mullen Scales of Early Learning achieved by “Helen,” “Nick,” and “John” during their successive visits at the clinic.

FIGURE 6.2. Age-equivalent scores on the Vineland Adaptive Behaviors Scales achieved by “Helen,” “Nick,” and “John” during their successive visits at the clinic.

THE CASE OF “NICK” Nick was evaluated at the ages of 20, 31, and 45 months. From the time of his initial evaluation, and consistently through his early childhood, Nick presented with a profile of strong developmental skills accompanied by significant deficits in social reciprocity and communication. Scores on diagnostic instrumentation and clinical diagnosis were consistent with autism in all three evaluations.  Early Developmental History Nick was born after a pregnancy complicated by severe

evaluations.  Early Developmental History Nick was born after a pregnancy complicated by severe viral or flu-like ill- ness and severe nausea. Concern about a low level of amniotic fluid resulted in an emergency C-section. Birth weight was 7 pounds 13 ounces, and Apgar scores were 4 and 9. He was noted to have somewhat low tonus at birth. His mother felt that he did not like to be held. He was hard to feed and seemed unresponsive at first. Other concerns emerged within days of his birth and

hard to feed and seemed unresponsive at first. Other concerns emerged within days of his birth and remained throughout his first year of life. He did not seem to be interested in looking at other people and did not startle to loud sounds. He had staring spells and could not seem to nestle when held. By 9 months of age, he was able to sit up if held and soon started to crawl. He began to walk at about the age of 15 months. Nick liked fans and other spinning objects and was also interested in

about the age of 15 months. Nick liked fans and other spinning objects and was also interested in bright lights. As a toddler, Nick’s response to others was variable. He could discriminate between his parents and other people, but only rarely imitated simple adult movements. He was only rarely interested in other children. He was unresponsive when his name was called, and eye contact was inconsistent.  Family and Medical History Nick’s family history was positive for a first cousin with autism,

Family and Medical History Nick’s family history was positive for a first cousin with autism, and his father had a seizure disorder. Nick has never had signs or symptoms of seizures, although, as noted, he had an early history of long staring spells. Results of electroencephalographic (EEG) studies, brain magnetic reso- nance imaging (MRI), and cytogenetic testing were noncontributory to the diagnostic process. Nick was evaluated by a neuropsychologist at the age of 11 months. Results revealed

process. Nick was evaluated by a neuropsychologist at the age of 11 months. Results revealed mild delays in cognitive and fine motor skills and more significant delays in gross motor and language skills. The most significant delays were noted in social communication and social relatedness. Diagnostic impressions at that time were consistent with an autism spectrum disorder, and Nick was then referred to the Yale Developmental Disabilities Clinics.  Intervention History Nick began receiving

referred to the Yale Developmental Disabilities Clinics.  Intervention History Nick began receiving early intervention services when he was 9 months of age. By the time he was first evaluated in our Clinics at the age of 20 months, he was receiving occupational therapy, physical therapy, speech– language services, and 3 hours a week of applied behavior analysis (ABA). Services continued when Nick entered the school system at age 3, with a marked increase of 20 hours per week of in-home ABA

Nick entered the school system at age 3, with a marked increase of 20 hours per week of in-home ABA services. His par- ents attended numerous workshops and support groups for parents of children with developmental disabilities.  Assessment At all three time points, Nick was administered the MSEL, the VABS, the ADI-R, and the ADOS-G (Module 1 for the first two assessments, and Module 2 for the third assessment).  Developmental Profile During his initial evaluation at the age of 20 months, Nick’s

assessment).  Developmental Profile During his initial evaluation at the age of 20 months, Nick’s developmen- tal profile was quite strong, with scores ranging from average to above average as compared with same-age peers. Receptive language was his strongest ability, with an age-equivalent score falling at the 25-month level. Expressive language was less well developed, falling at the 17-month level. Nonverbal problem solving was at the 24-month level, and fine motor skills were at the

level. Nonverbal problem solving was at the 24-month level, and fine motor skills were at the 21-month level. Figure 6.1 (“Nick”) illustrates the variable rate of progress that Nick made between his first and third evaluations. At 31 months, nonverbal cognitive and receptive language skills developed at a pace consistent with chronological growth. There was tremendous growth in expressive lan- guage, going from age equivalents of 17 months to 35 months from the first to the second evaluation,

going from age equivalents of 17 months to 35 months from the first to the second evaluation, indicating a growth of 18 months within an 11-month period. In contrast, he showed a progress of only 6 months in fine motor skills within the same time span. At 45 months, a different pat- tern was obtained. Nick showed remarkable growth in nonverbal cogni- tive skills, with a gain of 24 months within a 14-month period. His score in this domain was in the superior range, 12 months above his

within a 14-month period. His score in this domain was in the superior range, 12 months above his chronological age. Rates of receptive and expressive language skills slowed a little, but overall levels were commensurate with his chronological age. Fine motor skills continued to be somewhat delayed.  Speech, Language, and Communication Profile At 20 months, Nick’s speech was limited to approximately 20 single-word approximations, which was commensurate with the 13- to 17-month devel- opmental

20 single-word approximations, which was commensurate with the 13- to 17-month devel- opmental level. He showed a reduced frequency of spontaneous and intentional communication, little use of communicative gaze to direct his communication, and a reduced capacity to respond to or establish joint attention. Conventional gestures were limited to a “give” gesture, touch, and a head shake. By 31 months, Nick’s speech had improved sufficiently to make possible an administration of the Reynell

months, Nick’s speech had improved sufficiently to make possible an administration of the Reynell Developmental Lan- guage Scales, which resulted in comprehension and expression scores in the lower portion of the normative range (thus lower than his language scores on the MSEL). The average mean length of utterance (MLU) was 2.08 words, which fell at the 26-month age level. Despite these gains, Nick’s repertoire of two- and three-word combinations and simple sen- tence structures was still

Nick’s repertoire of two- and three-word combinations and simple sen- tence structures was still limited. He relied heavily on verbal prompting and exhibited immediate echolalia. At 45 months, language comprehen- sion and expression, as measured with the Reynell, continued to improve and now fell in the upper portion of the normative range. The MLU was 3.81, falling within expected levels. Nevertheless, conversation patterns were dominated by his strong interest (e.g., cameras and fans), and

conversation patterns were dominated by his strong interest (e.g., cameras and fans), and his speech continued to have a repetitious quality.  Adaptive Functioning At 20 months, with the exception of (fine and gross) motor skills, Nick’s adaptive behavior profile was significantly delayed across all areas, rela- tive to both his chronological and his developmental age, with extreme delays in the area of interpersonal skills (at the 5-month level). Figure 6.2 (“Nick”) illustrates the variable

area of interpersonal skills (at the 5-month level). Figure 6.2 (“Nick”) illustrates the variable rate of progress that Nick made between his first and third evaluations. At 31 months, receptive and expressive skills improved, although they were still below chronological and develop- mental levels, and motor skills appeared to be slowing relative to chrono- logical growth. There was improvement in interpersonal skills but almost none in play skills, and both areas of socialization remained

in interpersonal skills but almost none in play skills, and both areas of socialization remained significantly delayed. At 45 months, there was continued growth in receptive and lan- guage skills, marked improvement in interpersonal and, particularly, play skills, although all of these domains were still significantly delayed relative to his age and developmental level. There was remarkable growth in “readiness” or preacademic skills, with his “written” skills reaching the 59- month level when

in “readiness” or preacademic skills, with his “written” skills reaching the 59- month level when he was still 45 months of age. This was a reflection of Nick’s affinity for numbers and letters. This score inflated his overall score in the communication domain (which by then fell in the lower por- tion of the normative range), which combines receptive, expressive, and written skills, thus misrepresenting his true language abilities if sub- domain scores were not considered separately. Overall,

his true language abilities if sub- domain scores were not considered separately. Overall, he made the larg- est gains between his second and third evaluations, but as seen in Figure 6.2, this growth was selective and highly variable across domains. Overall, at 45 months he was still about 1 year below chronological and develop- mental level. Also of concern were Nick’s functional motor skills, which showed no growth between 31 and 45 months, resulting in substantial delays. This was consistent

showed no growth between 31 and 45 months, resulting in substantial delays. This was consistent with scores on the MSEL, which showed that fine motor skills became progressively more impaired over time relative to chronological growth.  Diagnostic Presentation On the ADOS-G, Module 1 at 20 months, when the supports inherent in the format of structured developmental and speech testing were removed, Nick presented as a self-directed and self-absorbed little boy. Social-communicative skills

Nick presented as a self-directed and self-absorbed little boy. Social-communicative skills acquired during structured one-to-one teach- ing situations had not generalized to more naturalistic settings. Al- though he was fairly interested in a number of presented materials, he was not likely to show them to others or to ask for help in operating some of the toys. His first “line of defense” was to try and get things done or to “fix” things independently. If this failed, he was likely to lose

to try and get things done or to “fix” things independently. If this failed, he was likely to lose interest in the toy or activity rather than to ask for help. His play was limited to cause-and-effect toys, construction materials, and manipula- tion of little cars. Although he was aware of the function of many objects and was able to use them appropriately, he was drawn to extra- neous characteristics of objects, such as shiny details, car wheels, doll’s eyes, and edges of books. The diagnostic

of objects, such as shiny details, car wheels, doll’s eyes, and edges of books. The diagnostic impression was consistent with autism. On the ADOS-G, Module 1 at 31 months, progress in social commu- nication was evident but much vulnerability remained. Nick had become more responsive to others and more likely to make attempts to involve other people in his activities (e.g., by holding up objects for show). Yet the quality and frequency of his spontaneous bids for interaction were lim- ited. For

show). Yet the quality and frequency of his spontaneous bids for interaction were lim- ited. For instance, he was less likely to monitor the behavior of others or to use eye contact for communicative purposes, and when left to his own devices entirely, he engaged in self-stimulatory and repetitive behaviors (e.g., making things spin, examining edges and surfaces through the cor- ners of his eyes). His play was still dominated by cause-and-effect toys. Yet with intrusive prompting and

his eyes). His play was still dominated by cause-and-effect toys. Yet with intrusive prompting and scaffolding, he could be engaged in simple one-step pretend-play episodes with figurines (e.g., feeding the dolls or placing them in furniture). Overall, his presentation was still very much consistent with autism. On the ADOS-G, Module 2 at 45 months, Nick’s social and communi- cative gains were much more pronounced. By then he used complex sen- tences to describe his activities, provided a

much more pronounced. By then he used complex sen- tences to describe his activities, provided a narrative in play, recounted past events, shared attention and made requests. He was more interested in novel adults and could follow and participate in social exchanges, but only if these were highly structured and supported by the examiner. If these supports were removed, however, Nick again gravitated toward his strong interests, which mainly involved self-stimulatory behaviors (e.g., spinning

toward his strong interests, which mainly involved self-stimulatory behaviors (e.g., spinning things) and cause–effect play. Interestingly, he began to “intellec- tualize” some of these stereotypic behaviors by adding narration to them in an attempt to make them appear more appropriate. For instance, when spinning a disc, he stated that it might be a “CD”; he would then begin to hum a tune while covering his ears with his hands. His perseverative inter- ests more generally, however, began to

covering his ears with his hands. His perseverative inter- ests more generally, however, began to pervade his social interactions and play. For example, he moved his hands like a fan or windshield wipers. And despite his significant growth in language, his speech was still echola- lic and repetitive and his voice was often high-pitched. Thus, his many gains notwithstanding, his presentation was still consistent with autism.  Summary In contrast to Helen, whose first year of life appeared not to

consistent with autism.  Summary In contrast to Helen, whose first year of life appeared not to be of con- cern to her parents and pediatrician, Nick had a first year filled with seri- ous worries for his parents. And yet Helen’s outcome was much more compromised than Nick’s. Despite apparent developmental delays at 11 months, at his first evaluation at 20 months he was already showing skills at close to age expectations, but these contrasted with severe limitations in language and

skills at close to age expectations, but these contrasted with severe limitations in language and communication beyond labeling of objects. His social impairment and repetitive and stereotypic patterns of behavior were prototypically autistic, with severe delays in social adaptation. In the next 25 months he made remarkable developmental gains, first in expressive language and then in nonverbal cognitive skills. At 45 months his nonver- bal functioning was 12 months above expected age level,

cognitive skills. At 45 months his nonver- bal functioning was 12 months above expected age level, language was within the average range, and fine motor skills were delayed. But he was unable to translate this potential into real-life skills, with moderate delays in language use, socialization, and what appeared to be a plateau in motor skills. A remarkable jump in reading (decoding) skills resulted in levels that were 14 months above his chronological age. Diagnostically, Nick’s speech and

in levels that were 14 months above his chronological age. Diagnostically, Nick’s speech and language were marked by echolalia and rigidities; imagination was impoverished and communication was disrupted by circumscribed interests; and he had a wide range of stereotypic behaviors. Overall, his behavioral presentation was consistent with prototypical autism, but he had strong skills, albeit quite variable across domains.  THE CASE OF “JOHN” John was evaluated at the ages of 18, 32, and 54

quite variable across domains.  THE CASE OF “JOHN” John was evaluated at the ages of 18, 32, and 54 months. His early presen- tation was consistent with autism and global developmental delays. In his subsequent developmental trajectory, however, he showed remarkable progress in language. Delays in social reciprocity and communication remained, although by the age of 54 months these could be described as “residual” and more consistent with a diagnosis of Pervasive Developmen- tal Disorder-Not

as “residual” and more consistent with a diagnosis of Pervasive Developmen- tal Disorder-Not Otherwise Specified (PDD-NOS) rather than autism. We raised the possibility that future evaluators might “move” him out of the autism spectrum if his developmental history was not considered. In many ways, his presentation was more complex than Nick’s.  Early Developmental History John was the youngest of three children, with two older typical siblings. Delivery was performed at 36 weeks of gestation

of three children, with two older typical siblings. Delivery was performed at 36 weeks of gestation via C-section because of placenta accreta. John weighed 6 pounds, 7.5 ounces, at birth. He was described as an easy, placid infant who was not as demanding as his two older brothers. Initial developmental milestones were on time with subse- quent delays. He smiled by 2–3 months, sat without support at 6 months, and crawled by 9 months. His first words emerged at 15–16 months (e.g., “Hi,” “mama,”

at 6 months, and crawled by 9 months. His first words emerged at 15–16 months (e.g., “Hi,” “mama,” “dada”), but were not followed by the acquisition of new words. He did not start walking until 18 months. John’s parents became concerned about his development when he was approximately 15 months of age. They noticed that his eye contact was very limited, particularly with less familiar people, and he was unlikely to respond to his name or to approach a family member other than parents. In

and he was unlikely to respond to his name or to approach a family member other than parents. In addition, his speech and motor development were not progressing as expected. By the age of 18 months, John had about three words, which he used infrequently and indiscriminately. He had difficul- ties in walking by himself. He developed an aversion to forms of sensory stimulation, and he would cover his ears or eyes in response to sound or light. He also avoided being touched and would bang his head

ears or eyes in response to sound or light. He also avoided being touched and would bang his head against hard surfaces. Although he could usually tell the difference between his parents and other people, he responded to others very inconsistently. He had almost no interest in other children, although he would, occasionally, play very simple interaction games. He rarely imitated simple adult move- ments or sounds. John began speaking in two-word phrases at the age of 30 months, and by 54 moths

ments or sounds. John began speaking in two-word phrases at the age of 30 months, and by 54 moths he was speaking in full sentences. Nevertheless, his par- ents remained concerned about a range of behaviors. He showed an inter- est in looking at spinning objects and sought out activities that involved body spinning, twirling, or running in circles. His parents described him as “very high maintenance” and not easy to care for, as he seemed to get upset and frustrated very easily and frequently.

and not easy to care for, as he seemed to get upset and frustrated very easily and frequently. When upset, he would hit himself on the head and scream rather than use his words to express his frustration or to otherwise attain what he wanted. On a few occasions when upset, he talked about wanting to kill himself and others. He remained sensitive to sensations in his environment, like temperature and sound.  Family and Medical History There was no reported history of autism or developmental

and sound.  Family and Medical History There was no reported history of autism or developmental disabilities in John’s extended family. John was generally a healthy baby, except for one ear infection and suspected respiratory syncytial virus (RSV) infection at 9 months. Behavioral audiometry at 18 months was within normal limits. As per the advice of a homeopathic doctor, he was placed on a gluten-, casein-, and soy-free diet, although a regular diet was introduced by the time he was 4 years of

casein-, and soy-free diet, although a regular diet was introduced by the time he was 4 years of age.  Intervention History After John’s initial diagnosis, he began to receive early intervention ser- vices consisting of speech–language therapy for 1 hour ten times per week, 1 hour of occupational therapy four times per week, and play ther- apy 1 hour six times per week. John had “therapeutic listening” for 1 hour per day, as well as applied behavior analysis (ABA) therapy for 4 hours per week.

for 1 hour per day, as well as applied behavior analysis (ABA) therapy for 4 hours per week. He also attended a preschool program 3 days per week, 2 hours per day, where an aide accompanied him.  Assessment At all three time points, Nick was administered the MSEL, the VABS, the ADI-R, and the ADOS-G (Module 1 for the first assessment and Module 2 for the second and third assessments).  Developmental Profile At 18 months, John was exhibiting global developmental delays, with moderate delays in

Profile At 18 months, John was exhibiting global developmental delays, with moderate delays in his nonverbal reasoning skills and, to a lesser extent, fine motor skills and very severe delays in his language abilities. At 32 months, he had made marked progress in all areas of development, in fact catching up with expectations on the basis of chronological age. Figure 6.1 (“John”) illustrates these gains, with the most significant progress noted in his receptive and expressive language. John’s

gains, with the most significant progress noted in his receptive and expressive language. John’s language skills con- tinued to improve at a striking rate, with receptive and expressive language scores falling significantly above age expectations (by 11–16 months) at the time of his third evaluation at 54 months. Nonverbal rea- soning also evidenced marked improvement; fine motor skills improved but still lagged behind age expectations. To highlight his rate of progress in language: From the

but still lagged behind age expectations. To highlight his rate of progress in language: From the second to the third evaluation, he made a 32- to 38- month gain within the period of 22 months.  Speech, Language, and Communication Profile At 18 months, John’s speech, language, and communication were ex- tremely delayed. He had no words, and very little in terms of spontaneous and intentional communication, communicative gaze, and joint attention. Nonverbal and verbal forms of communication

communication, communicative gaze, and joint attention. Nonverbal and verbal forms of communication (e.g., gestures, vocaliza- tions, word approximations) were commensurate with the 8- to 9-month developmental level, and his comprehension of words and simple direc- tions was commensurate with the 10- to 12-month developmental level. At 32 months, there was remarkable growth. He used an appropriate range of word classes, with a mean length of utterance (MLU) of 3.44 mor- phemes, which was at age

range of word classes, with a mean length of utterance (MLU) of 3.44 mor- phemes, which was at age level. He varied volume, inflection, and pitch in a communicative way, especially when he wanted to convey intense emo- tion and when asking questions. John’s comprehension of language also improved markedly. His understanding of both routine phrases and com- mands and novel sentence structures was age appropriate. He could use gestures and words to regulate others’ behavior (e.g., requesting

was age appropriate. He could use gestures and words to regulate others’ behavior (e.g., requesting objects and actions and protesting), to draw others’ attention to environmental stimuli of interest to him (e.g., verbal commenting, pointing, asking for information), to clarify information, to respond to others’ greetings, to request comfort, and, on one occasion, to show off. Although he was adept at selecting appropriate words and gestures to achieve these goals, John’s communication often

at selecting appropriate words and gestures to achieve these goals, John’s communication often lacked persistence and intentionality. For example, he might comment on an interesting picture, but would not look to see if others were paying attention or otherwise insist that they should. Overall, he was less likely than other children his age to use communica- tion to attract another person’s attention to himself and to engage in social interaction. At 54 months, John was administered the Reynell

to himself and to engage in social interaction. At 54 months, John was administered the Reynell test, and his scores in both comprehension and expression tasks fell within the average range. On the receptive portion, he was able to do all items on the test, except those that required the ability to draw inferences from a picture in answer to spe- cific questions. Although this difficulty was not atypical for 4-year-olds, John was unable to use the information he had to even make a guess. He

atypical for 4-year-olds, John was unable to use the information he had to even make a guess. He seemed quite baffled by the nonliteral questions. On the expressive portion of this test, John had difficulty in imitating sentences and correcting incor- rect forms (“He drive the car”). Again, these difficulties were not indicative of a significant delay, but suggested that John needed extra practice in hold- ing linguistic information in mind and in using it to make decisions.  Adaptive

practice in hold- ing linguistic information in mind and in using it to make decisions.  Adaptive Functioning John’s profile of adaptive skills is quite interesting. At 18 months, he had very severe delays in interpersonal skills and moderate impairments in all other areas of adaptive functioning. These delays were consistent with cognitive and speech–language testing. By 32 months, he had made great but variable progress, with remarkable gains in receptive language (a jump of 34 months within

but variable progress, with remarkable gains in receptive language (a jump of 34 months within a 14-month period), significant progress in expressive language and fine motor skills (although he remained delayed relative to his age), and more modest gains in socialization. Interestingly, his receptive language score on the VABS (an age-equivalent score of 48 months at the chronological age of 32 months) was in fact higher than the receptive language score on the MSEL or in direct speech–language

was in fact higher than the receptive language score on the MSEL or in direct speech–language test- ing. In other words, he could understand more language and communica- tion in a real-world environment than one would predict on the basis of his language potential (e.g., size of vocabulary, syntactic forms, response to standardized directions). As discussed subsequently, this is an anomaly in individuals with ASD, whose almost universal profile indicates higher scores on direct testing (i.e.,

with ASD, whose almost universal profile indicates higher scores on direct testing (i.e., potential) relative to consistent use of skill to

meet the demands of everyday life (i.e., competence), which is what the VABS measures. And yet this contrasted with his adaptive skills in expres- sive language, which lagged behind relative to his testing scores and rela- tive to age expectations. As noted, socialization skills lagged behind even farther. Figure 6.2 (“John”) illustrates the variability in gains by domain of adaptive behavior from the first to the third evaluation results. At 54 months, John had made marked progress in all

from the first to the third evaluation results. At 54 months, John had made marked progress in all areas of adap- tive functioning, with levels getting close to age expectations though still somewhat lagging behind (the lack of change in receptive skills reflects the low ceiling levels in this subdomain of communication on the VABS). There were two important exceptions, in opposite directions: His play skills were still very significantly delayed (besides having some limitations in imagination,

play skills were still very significantly delayed (besides having some limitations in imagination, disruptive behaviors were now affecting his ability to play with peers); in contrast, “written” or preacademic skills showed the largest improvement and were now at age level. These various gains notwith- standing, John’s adaptive scores were much lower than one would expect on the basis of his cognitive and language potential as tested directly (e.g., a gap of 26 months in expressive language if

and language potential as tested directly (e.g., a gap of 26 months in expressive language if comparing MSEL with VABS results). Thus, he could perform much better on testing than he could avail himself of these skills when trying to meet the communication demands in real life (e.g., with peers). That is, a sizable portion of his progress was still not translating into competence (e.g., generalizing to new settings and functional contexts).  Diagnostic Presentation At 18 months, John explored

to new settings and functional contexts).  Diagnostic Presentation At 18 months, John explored new environments in a very isolated fashion, neither seeking nor responding to his parents’ bids. He failed to spontane- ously acknowledge the presence of unfamiliar people and, in fact, it was quite difficult to attract his attention or establish eye contact with him at all. Although he vocalized a great deal, words or word approximations were not heard during the diagnostic session. He also

a great deal, words or word approximations were not heard during the diagnostic session. He also displayed a number of unusual sensory-related behaviors, particularly in the realm of visual stimulation (e.g., inspecting objects closely). On the ADOS-G algorithm, he obtained a combined score of 20, which fell solidly above the threshold for autism. Clinician-assigned diagnosis was consistent with autism. At 32 months, John was already speaking in full sentences for both requesting desired

with autism. At 32 months, John was already speaking in full sentences for both requesting desired objects and commenting about the environment. How- ever, he still exhibited immediate echolalia. And despite his impressive language and communicative gains, John typically failed to integrate eye contact with verbal requests. Very significant limitations in pretend or symbolic play persisted. On the ADOS-G, despite a lower score on the communication cluster (i.e., less impairment), his scores

the ADOS-G, despite a lower score on the communication cluster (i.e., less impairment), his scores continued to be above the autism threshold. At 54 months, language and communication vulnerabilities were much less apparent, and yet impairments in recipro- cal social interaction and in symbolic play behaviors persisted. The “prototypicality” of his autistic behaviors had disappeared, and his vulner- abilities were more confined to social situations in which contingency and reciprocity were

vulner- abilities were more confined to social situations in which contingency and reciprocity were critical, and when play activities involved a key pretend component for joint play to take place (e.g., developing an imaginary sequence or plot, sharing the pretend scheme introduced by the other person). His scores on the ADOS-G were no longer above the threshold for autism, but still met the criteria for ASD (or PDD-NOS).  Summary In many ways, John’s presentation at the age of 18 months was

for ASD (or PDD-NOS).  Summary In many ways, John’s presentation at the age of 18 months was almost as troubling as that of Helen’s. And yet their eventual outcomes were extremely different. Helen became severely intellectually disabled and prototypically autistic, whereas John’s developmental skills reached aver- age levels and his social and communication presentation was more of a “residual” quality, with clear vulnerabilities, but these were noticeable only in more demanding social and

quality, with clear vulnerabilities, but these were noticeable only in more demanding social and communicative situations. Besides his initial severe social impairments and self-stimulatory behaviors, he had delayed motor development, beginning to walk only at about the age of 18 months. His language progressed rapidly, and eventually echolalic utter- ances faded and his ability to use language for the purpose of communi- cation improved greatly. Reading decoding skills were a relative strength

the purpose of communi- cation improved greatly. Reading decoding skills were a relative strength by 4½ years. Yet despite this extremely positive outcome, there was a wide range of highly concerning behaviors. These included poor self- regulation, low frustration levels associated with self-injury, persistent sen- sory sensitivities, and deep despondency. It seemed that as his social dis- ability improved, his behavioral and emotional presentation became increasingly more concerning. Emerging

improved, his behavioral and emotional presentation became increasingly more concerning. Emerging social awareness and frustration with persistent difficulties appeared to fuel his dissatisfaction and mal- adaptive, as well as aggressive, reactions.  DISCUSSION The notion that there is no autism, but “autisms,” is gaining some popu- larity among researchers frustrated by the vast heterogeneity of both phe- notype and genotype in ASD. Etiology is likely to be multifactorial and complex,

of both phe- notype and genotype in ASD. Etiology is likely to be multifactorial and complex, evidenced already in discoveries of genes associated with autism (Gupta & State, 2007), which come with warnings of strong epigenetic effects. And yet the older notion that autism represents a syndrome that results from a “common pathway” to social disability is still tenable. After all, the main stage of social and communication development is the earli- est iterative experiences of reciprocal social

social and communication development is the earli- est iterative experiences of reciprocal social engagement (Klin, Jones, Schultz, & Volkmar, 2003). Disruptions of this pathway were already hypothesized to be at the root of autism by Kanner in his original descrip- tion of the syndrome (1943). But social and communicative development is also impacted by an assortment of other developmental skills. Language is critical, but it may at times grow as if outside the realm of social interac-

tion. A large vocabulary is not a guarantee of competence in communica- tion (Paul, 2005). Intelligence is highly correlated with language develop- ment, but it may leave it behind as nonverbal problem-solving skills forge ahead, creating disconnections between verbal and nonverbal intelligence (Klin, Saulnier, Tsatsanis, & Volkmar, 2005). Motor skills are critical not only in inquisitive exploration of the environment, but also in tactile intersubjectivity in the life of the infant. Most small

of the environment, but also in tactile intersubjectivity in the life of the infant. Most small children can be at times overwhelmed by sensations and sensory stimulation, but children with ASD may have extreme though variable responses to both environ- ment and social stimuli, erecting an additional barrier to exploratory learning and to social intimacy. Thus, the notion of a single “final com- mon pathway” is challenged by varied permutations of all of these factors and how they might

com- mon pathway” is challenged by varied permutations of all of these factors and how they might interrelate to yield developmental profiles in individ- ual children. Nowhere are we as challenged as when attempting to predict out- come in infants with ASD. There were serious developmental concerns in Nick’s and in John’s first years of life, and apparently none in Helen’s case. And yet she had the worst outcome. At their first evaluations in the second year of life, Helen and John presented

the worst outcome. At their first evaluations in the second year of life, Helen and John presented with serious developmental delays; yet John’s autism could be characterized as “residual” by the third evaluation, whereas Helen’s could be characterized as “prototypical.” Nick’s initial developmental profile was the strongest of the three, and yet, despite his marked gains, his autism was still much more pronounced at the third evaluation than John’s. These challenges notwithstanding, there are

more pronounced at the third evaluation than John’s. These challenges notwithstanding, there are a number of lines of conceptual convergence suggested by these three cases, which have clini- cal and research implications, as explored in the following paragraphs.  How Low Can We Measure Sociability? All three children had severe social adaptive disabilities at their first assess-

ments. At 15 months, 20 months, and 18 months, Helen, Nick and John, respectively, had age-equivalent scores on the interpersonal subdomain of the VABS at 7, 5, and 6 months. However, detailed diagnostic observations by experienced clinicians discerned the most socially disconnected and iso- lated picture in Helen’s case (see Klin et al., 2004, for a detailed descrip- tion). Unfortunately, standardized instrumentation available to clinicians may not be sufficient to truly quantify levels of

instrumentation available to clinicians may not be sufficient to truly quantify levels of sociability covering accom- plishments taking place in the full first year of life. And yet the amount of social and communicative growth from 1 to 12 months is truly astounding. Developmental psychologists should challenge the notion that someone with her profile can be characterized with social adaptive skills at the 7th month level. After all, anyone who has interacted sufficiently with 7-month- old

skills at the 7th month level. After all, anyone who has interacted sufficiently with 7-month- old babies knows how profoundly social and reciprocal they are. In Helen’s case, she failed to exhibit skills such as preferential atten- tion to speech sounds, orientation to socially revealing aspects of the face such as the eye region, reactions to the presence and intrusion of another person, and differentiated behaviors resulting from exaggerated facial and bodily gestures as well as playful

differentiated behaviors resulting from exaggerated facial and bodily gestures as well as playful voice inflections, all of which are fully online in the first months if not weeks of life of typically developing babies (Klin et al., 2003). As clinicians, we questioned what were Helen’s perceptual and mental experiences of another person, and considered how we could capture what appeared to profound unrelatedness. To address this concern, we performed two experiments intended to answer the

unrelatedness. To address this concern, we performed two experiments intended to answer the following questions (Klin & Jones, 2007): (1) Is Helen capable of imparting social meaning to what she sees? In other words, can she think about people? And (2) does Helen visually inspect approaching peo- ple in ways that reveal her understanding of a complex visual configura- tion as a person? In other words, can she see people? To answer the first question, we used point-light animations emulating

words, can she see people? To answer the first question, we used point-light animations emulating social experiences in infancy. The capacity for recognizing point-light displays of this nature as exemplars of “biological motion” (e.g., distinguishing moving dots depict- ing a walking person from dots moving randomly) has been shown in 3- month-old infants (Fox & McDaniel, 1982). Helen’s looking behavior in response to such displays was entirely random, indicating an inability to impose mental

behavior in response to such displays was entirely random, indicating an inability to impose mental templates of human action onto these displays. But an ex- ception occurred when we inadvertently created a contingency that involved physical causation (points “colliding” and making a sound in the act of playing “pat-a-cake’). She was acutely aware of this phenomenon. Thus, she was unable to appreciate the motion contingencies of human action but could fully appreciate the physical contingencies

the motion contingencies of human action but could fully appreciate the physical contingencies of points col- liding and making sounds. Following these observations, and to address the second question, we explored whether Helen’s sensitivities to physically contingent versus socially contingent stimuli might also result in atypical visual fixation pat- terns when she looked at people. Typical infants prefer to focus on the eye region of the face from at least the age of 3 months (Haith,

infants prefer to focus on the eye region of the face from at least the age of 3 months (Haith, Bergman, & Moore, 1977), consistent with the idea that the eyes convey the most social-affective information (Emery, 2000). In contrast, Helen’s sensitivity to information that was physically synchronous in the point-light anima- tions, together with the cross-modal physical contingency of speech sounds and lip movements, predicted that when looking at videos of a caregiver, Helen would

speech sounds and lip movements, predicted that when looking at videos of a caregiver, Helen would preferentially fixate on the mouth region of the face. We compared her visual fixation patterns to those of two typically developing infants matched to her on nonverbal and verbal mental age, respectively. As shown in Figure 6.3, Helen spent most of her viewing time focused on caregivers’ mouth regions. These fixation patterns con- trasted markedly with those of the two other infants. Based on

These fixation patterns con- trasted markedly with those of the two other infants. Based on these results, we hypothesized that this pattern of looking would suggest seeing the world, and even people, as a collection of physical contingencies, unmoored from their social context or adaptive relevance. Living in such a world would likely have a profound impact on the development of the social mind and on the organization of the social brain (Johnson 2001). There is no doubt that Helen’s

mind and on the organization of the social brain (Johnson 2001). There is no doubt that Helen’s developmental trajectory reflected a complex interplay between her genetic and neurobiological makeup and experiential factors. However, her social disability limited significantly the range of experiences typically available to nonaffected infants and tod- dlers. Helen tended to isolate herself and responded with active avoidance to purely social overtures. Her extremely limited motor and vocal

responded with active avoidance to purely social overtures. Her extremely limited motor and vocal imita- tion skills severely restricted her ability to learn through observation. Over time, her tendency to explore novel toys declined and her attention became more fleeting. Her spontaneous activities consisted frequently of seemingly aimless wandering, climbing, mouthing objects, or engag- ing with toys producing immediate effects (e.g., pushing buttons). She appeared more restless and more

with toys producing immediate effects (e.g., pushing buttons). She appeared more restless and more perturbed by changes in the environ- ment and the demands placed on her. Her self-stimulatory and repetitive behaviors intensified, and the range of her interests became much nar- rower. In light of this developmental course, we would not rule out the possibility that her eventual severe intellectual impairment resulted from, rather than simply contributed to, her profound social impairments. To

impairment resulted from, rather than simply contributed to, her profound social impairments. To advance the field in this domain, however, there is a dire need for more sensitive, more quantified, and more encompassing measurements of sociability that span all levels of development from the first weeks of life. At present, our standardized measurements of social functioning are blunt instruments that may in fact blur important differences among simi- larly impaired infants. The importance of

that may in fact blur important differences among simi- larly impaired infants. The importance of such measurements lies in the fact that more traditional predictors of outcome such as nonverbal intelli- gence and even language, as measured in infants, are not predictive of outcome, as illustrated in the three cases described here. The use of the word spectrum to denote different levels of affectedness implies that one or more factors or dimensions are generating this spectrum, either alone or

implies that one or more factors or dimensions are generating this spectrum, either alone or in complex combinations. Sociability is a likely candidate, particularly given that subsequent and related social-cognitive accomplishments, such as aspects of joint-attention skills, have been shown to be powerful predic- tors of language use, communication, and symbolic development in ASD (Mundy & Burnette, 2005).  FIGURE 6.3. Visual fixation while watching scenes of a caregiver. (A) Screen- shots of

2005).  FIGURE 6.3. Visual fixation while watching scenes of a caregiver. (A) Screen- shots of data from infant with autism (age 15 months). (B) Screenshots of data from typically developing control matched on nonverbal mental age (age 15 months). (C) Screenshots of data from typically developing control matched on verbal mental age (age 9 months). (D) Percentage of visual fixation time on eyes,

mouth, body, and object regions for infant with autism and nonverbal mental age-
matched control. (E) Example coding regions for one frame of video. (F) Percent-
age of visual fixation time on eyes, mouth, body, and object regions for infant with
autism and verbal mental age-matched control. Bar graphs are percentage of total

fixation time, with SEM error bars. From Klin and Jones (2007). Copyright 2007 by Blackwell Publishing. Reprinted by permission.  Variability in Outcome: Is It the Result of Interplay between Available Skills and Social Adaptation? If Helen embodies profound social disability and disconnectedness with the social experience, Nick and John illustrate the challenge of under- standing the developmental trajectories of more successful outcomes. In both cases there were substantial gains in nonverbal

trajectories of more successful outcomes. In both cases there were substantial gains in nonverbal intelligence and in language. Yet their adaptive skill profiles indicate the marked differences in their ability to translate this potential into tools of adaptation to meet the demands of everyday life. Nick’s severe deficits in adaptive behavior was consistent with his more prototypical autistic presentation, whereas John’s milder adaptive behavior delays were consistent with a more resid- ual

presentation, whereas John’s milder adaptive behavior delays were consistent with a more resid- ual autistic presentation. But what could have accounted for the diver- gence in their developmental pathways? A more detailed account of their diagnostic presentation, even dur- ing the first assessment in their second years of life, pointed to some vari- ability in John’s social and communicative disabilities. Some emerging relatedness skills were noted, but these were highly inconsistent and

disabilities. Some emerging relatedness skills were noted, but these were highly inconsistent and situa- tional. In contrast, Nick’s social and communicative disabilities were more stable and rigid. John began to exhibit self-regulation problems and esca- lating maladaptive behaviors associated with frustration. These often related to people around him and their demands. They implied a sense of social awareness, albeit as a source of discomfort and confusion. Nick appeared to be increasingly

social awareness, albeit as a source of discomfort and confusion. Nick appeared to be increasingly more immersed in the inanimate world, de- veloping circumscribed interests associated with self-stimulatory habits. John’s language and nonverbal intelligence flourished in concert, whereas Nick’s nonverbal intelligence grew at a much faster pace than his lan- guage abilities. This is particularly so if language use and communication are used for the comparison rather than if a comparison is made

if language use and communication are used for the comparison rather than if a comparison is made using their formal language skills as measured with the MSEL. Nick did not acquire severe maladaptive behaviors, whereas John had tantrums, self- injurious behaviors, and despondent affect. Given these profiles, it is tempting to speculate that their outcomes may have resulted from the interplay of their developmental skills and what appeared to be their different adaptive tasks. In John’s case, he

developmental skills and what appeared to be their different adaptive tasks. In John’s case, he appeared to be playing the “social game” without knowing how, as it were. His task was social adaptation, but he was ill equipped for it. His emerg- ing awareness of the complex demands of others, as well as the discrep- ancy between desired and real outcome in social contacts, all enveloped by a sense of confusion and an inability to make sense of them, or seek sense from others, could have

a sense of confusion and an inability to make sense of them, or seek sense from others, could have unleashed what his parents described as a “high-maintenance” child. His progress in social relatedness appeared to go hand in hand with his challenging behaviors and sense of despair. In Nick’s case, the adaptive task appeared to be primarily confined to the inanimate world, touching briefly on the world of others only when they impinged on his isolated activities. Thus, he had very few

on the world of others only when they impinged on his isolated activities. Thus, he had very few maladaptive behaviors associated with social demands or experiences. What is of interest is that in the cases of the three children, despite their variable levels of language and intelligence, there was a fascination with let- ters and numbers, reflected in acquisition of reading decoding skills. In Helen’s case, this was devoid of comprehension. In Nick’s case, reading was associated with some

In Helen’s case, this was devoid of comprehension. In Nick’s case, reading was associated with some accumulation of facts but quite dissociated from social or emotional experiences. And in John’s case, reading appeared to be more tied to and related to his everyday activities and thus imbued with some self- referenced content. It may appear that, challenged by the changeable nature of the social world, children with ASD gravitate to the unchangeable nature of symbols and rules inherent in the

world, children with ASD gravitate to the unchangeable nature of symbols and rules inherent in the alphabet and numbers, and subse- quently in the decoding of graphemes and fluent reading (Klin et al., 2003). Although the phenomenon of “hyperlexia” (which encompasses precocious reading decoding skills and typically denotes reading decoding without reading comprehension; Grigorenko, Klin, & Volkmar, 2003) has been stud- ied primarily from the standpoint of reading skill (e.g., Grigorenko et al.,

2003) has been stud- ied primarily from the standpoint of reading skill (e.g., Grigorenko et al., 2002), the fact that this occurs much more frequently in individuals with ASD than in individuals with any other developmental or psychiatric condi- tion suggests a connection with social disability. In a sense, it would be adap-

tive for a socially disabled child to gravitate to an activity that is predicated
on explicit, rote, rule-governed, and unchangeable contingencies, when the alternative is a (social) world that is implicit, conceptual, intuitive, and con-

stantly changing. In a recent study of higher-functioning children and ado- lescents with ASD (Klin, Danovitch, Merz, Dohrmann, & Volkmar, 2007), more than 80% of a group of close to 100 individuals had an intense circum- scribed interested manifest in terms of verbal learning and memorization. A large proportion of this group had demonstrated intense interests in letters, numbers, and reading during their preschool years.  Standardized Instrumentation: Obvious Limitations and Discontinuities

their preschool years.  Standardized Instrumentation: Obvious Limitations and Discontinuities One of the more immediate conclusions drawn from these case studies is that different instruments measuring a given concept may not in fact mea- sure the same concept. For example, the receptive and expressive scales of the MSEL are very different from the scales focused on the same concepts in the Reynell, which, again, are very different from what is meant by receptive and expressive skills in the

which, again, are very different from what is meant by receptive and expressive skills in the VABS. Although obvious to the experi- enced clinician in the field of developmental disabilities, this is hardly self-evident to other professionals who are used to the high intercor- relation of all of these measures in typical populations. As evident in each of the profiles of the three children, MSEL scores in the language domains tend to be higher than in the equivalent scales on the Reynell, which

in the language domains tend to be higher than in the equivalent scales on the Reynell, which tend to be higher than the equivalent scales on the VABS. As the MSEL focuses primarily on the labeling of objects and on response to single-world utterances, the typical associative nature of language learn- ing in infants and young children with ASD frequently results in peak per- formance on such tasks. In contrast, the Reynell embeds testing in lan- guage that is used to understand a task, to

tasks. In contrast, the Reynell embeds testing in lan- guage that is used to understand a task, to relate objects to one another, to differentiate or to group them, and to formulate word combinations as phrases that make sense relative to a given task. In other words, the Reynell’s concept of “language” is much closer to language use than the concept of “language” in the MSEL. VABS results typically indicate more significant developmental delays than both of these, because here the con- cept of

indicate more significant developmental delays than both of these, because here the con- cept of “language” means a child’s ability to use language to meet the communicative demands in real life, where there is no scaffolding or structure provided by an examiner, and where the context for a given task needs to be created by the child him- or herself as the child understands a particular social situation. From a practical standpoint, different mea- sures of language provide different information

From a practical standpoint, different mea- sures of language provide different information about a given concept. They can all contribute to a more comprehensive picture of a child’s lan- guage abilities. But given the typical profiles found in children with ASD (Paul, 2005), it is apparent that we can easily misrepresent a child’s skills on the basis of our choice of instrument to be used. Similarly, the fact that a given testing domain is provided in an instru- ment for ages extending from

the fact that a given testing domain is provided in an instru- ment for ages extending from infancy to late childhood does not guaran- tee, and in fact is very unlikely to accomplish, continuity in that concept. For example, most wide-ranging cognitive tests intended for infants and preschoolers use increasingly more challenging tasks to measure problem- solving skills (Klin et al., 2005). Thus, one may progress from object per- manence, to simple identical matching tasks (e.g., on the basis of

may progress from object per- manence, to simple identical matching tasks (e.g., on the basis of color, shape, number), to conceptual matching tasks (e.g., on the basis of class of objects, meanings, patterns), to problem-solving tasks (e.g., transform- ing information, integrating information, reasoning). Given that children with ASD are much more likely to display a nonverbal reasoning style marked by associative and rote learning, and that they typically have defi- cits in integrative and

marked by associative and rote learning, and that they typically have defi- cits in integrative and conceptual learning, it is no surprise that one may often see a slowing in the rate of progress in these children. For example, a child may perform within the normative range at younger ages and dis- play significant deficits later on, not necessarily because his or her learn- ing is slowing down but simply because the sections of the same test for older children involve tasks that they have

but simply because the sections of the same test for older children involve tasks that they have difficulty with. Thus, one may see dropping scores on the same instrument over two testing periods sim- ply because of the nature of the test. For this reason, tests of nonverbal cognition in infants and toddlers with ASD appear to hold little predictive power for subsequent IQ tests. It is not surprising, therefore, that scores on nonverbal problem-solving skills on the MSEL (called “visual recep-

therefore, that scores on nonverbal problem-solving skills on the MSEL (called “visual recep- tion”) obtained during the first evaluation could hardly be considered predictive of these children’s cognitive outcomes.  Regression at 12 Months: What Does It Mean? Helen’s very early referral to a specialized clinic (at 15 months, relative to the epidemiological mean age of 40 months for a diagnosis of autism; Chakrabarti & Fombonne, 2001) was the result of her pediatrician’s alertness and the fact

autism; Chakrabarti & Fombonne, 2001) was the result of her pediatrician’s alertness and the fact that her parents were sensitized (and anxious) about increased genetic liability following the diagnosis of Helen’s older brother. Yet despite the pediatric follow-up that Helen had during the first year of life, it is still unclear as to the extent to which she suffered a

very meaningful regression at the age of 12–14 months, or conversely, whether detectable social symptomatology could have been identified in the first year of life (using methods that are not practical in routine pedi- atric visits). It is unequivocal, however, that she lost some words that she previously had. There are several possibilities that could account for this regression: (1) A meaningful regressive phase characterizes the onset of autism in a group of children, not unlike what is

regressive phase characterizes the onset of autism in a group of children, not unlike what is observed in children with Childhood Disintegrative Disorder but earlier in life (Richler et al., 2006); (2) the perception of “regression” is an artifact of parental perception, given that the disability becomes more “visible” in the second year of life (i.e., earlier development is seen as “normal”) because environmental demands and expectations are greater (e.g., one expects toddlers to begin to

because environmental demands and expectations are greater (e.g., one expects toddlers to begin to talk; Richler et al., 2006); and (3) a “pseudo-regressive phase” takes place (e.g., a child loses some words), but this process is part of the natu- ral course of autism (i.e., onset of the condition does not coincide with the “regression” phase but precedes it, and words lost are results of a maturational process of speech acquisition that is not an integral part of the development of

of a maturational process of speech acquisition that is not an integral part of the development of communication), and therefore is not reinforced by the typical natural predisposition to seek and communicate with others. This is a process not unlike the emergence of babbling in congenitally deaf children, which subsequently fades away (Lenneberg, 1967). The issue of regression in autism is far from resolved, despite an ongoing con- certed effort to elucidate it (Lord, Shulman, & DiLavore,

from resolved, despite an ongoing con- certed effort to elucidate it (Lord, Shulman, & DiLavore, 2004).  CONCLUSION The ultimate challenge of research focused on infants with ASD is to predict developmental trajectories of individual children. Its validity and utility depends to a great extent on our ability to answer parents’ questions about the future of their children. This includes knowledge in the prescription of specific regimens, modalities, and foci of treatment that are individualized

in the prescription of specific regimens, modalities, and foci of treatment that are individualized to the findings of quantifiable skills and disabilities revealed during com- prehensive assessments. The case studies described in this chapter highlight some of the limitations of the current concepts and instruments used in the assessment of infants and toddlers. This is not surprising, given the difficul- ties inherent in capturing highly heterogeneous phenotypes changing at fast rates, and

difficul- ties inherent in capturing highly heterogeneous phenotypes changing at fast rates, and the short length of time that the research enterprise has focused on very young children with ASD. We suggest that core concepts, such as sociability, are still poorly understood and measured and that novel experi- mental paradigms are needed in order to more fully understand factors that mediate outcome. In other fields of science, the word spectrum often means a range of possibilities created by

In other fields of science, the word spectrum often means a range of possibilities created by fairly discrete dimensions and their inter- relationships (e.g., light, pitch). If so, we are not quite ready to use this word

in the context of autism. Major advances have been made over the past two decades in early detection and diagnosis of autism spectrum disorders (ASD). With the increased number of infants and toddlers identified with ASD, there is a pressing need for interventions that are appropriate and effective for very young children with ASD and their families. There are a growing number of treatment studies documenting the effectiveness of interventions using developmental approaches with young children

documenting the effectiveness of interventions using developmental approaches with young children with ASD. This chapter begins with a brief synopsis of the core social communication deficits of very young children with ASD to provide a framework for considering the contributions of developmental treatment approaches. Next, we delineate the core features and guiding principles of developmental treatment approaches for very young children with ASD and how these are similar to and contrast with

approaches for very young children with ASD and how these are similar to and contrast with behavioral interventions. We attempt to identify “active ingredients” or intervention components that are used in developmental interventions and review empirical studies of their efficacy. The chapter highlights how developmental approaches may contribute to ameliorating core deficits in ASD and suggests directions for future research.

CORE SOCIAL COMMUNICATION DEFICITS IN CHILDREN WITH ASD There is a large body of research defining core social communication deficits of toddlers and preschool children with ASD. A deficit is considered to be core if it distinguishes children with ASD from other children with developmental delays (DD) and children with typical development (TD; Sigman, Dijamco, Gratier, & Rozga, 2004). Two core social communication deficits have been found to distinguish young children with ASD: (1) a deficit

social communication deficits have been found to distinguish young children with ASD: (1) a deficit in joint attention, which is reflected in difficulty in coordinating attention between people and objects, and (2) a deficit in symbol use, which is evident in difficulty in learning conventional meanings through gestures, words, and actions in play (Charman et al., 1997; Dawson et al., 2004; Loveland & Landry, 1986; Mundy, Sigman, & Kasari, 1990; Sigman, Mundy, Sherman, & Ungerer, 1986; Stone,

& Landry, 1986; Mundy, Sigman, & Kasari, 1990; Sigman, Mundy, Sherman, & Ungerer, 1986; Stone, Ousley, Yoder, Hogan, & Hepburn, 1997; Wetherby, Prizant, & Hutchinson,1998). A number of longitudinal studies provide evidence of a relationship between early social communication skills and language outcomes. Mundy et al. (1990) found that responding to and initiating gestural joint attention at a mean age of 3 years 9 months were significant predictors of language development 13 months later for

age of 3 years 9 months were significant predictors of language development 13 months later for children with ASD, whereas none of the other nonverbal measures, initial language scores, mental age, chronological age, or IQ were significant predictors. These findings were further substantiated in a long-term follow-up study demonstrating that initial joint attention skills of 51 children with autism at a mean age of 3 years 11 months predicted gains in expressive language at a mean age of 12

at a mean age of 3 years 11 months predicted gains in expressive language at a mean age of 12 years 10 months (Sigman & Ruskin, 1999). Most children identified as having ASD are reported by their caregivers to demonstrate symptoms within the first 2 years of life, based on retrospective accounts (Short & Schopler, 1988; Wimpory, Hobson, Williams & Nash, 2000). Furthermore, most family members initially express concern to their pediatrician by the time their child is 18 months old (Howlin &

initially express concern to their pediatrician by the time their child is 18 months old (Howlin & Moore, 1997; Siegel, Pliner, Eschler, & Elliot, 1988). Observational studies of social communication skills in children under 2 years of age with ASD are emerging from two different sources of information, retrospective analyses of home videotapes and prospective longitudinal designs. The largest cohort of retrospective analyses are based on home videotapes from first birthday parties of children

of retrospective analyses are based on home videotapes from first birthday parties of children later diagnosed with ASD. Osterling and colleagues (Osterling & Dawson, 1994; Osterling, Dawson, & Munson, 2002) found that children with ASD could be distinguished at their first birthday parties with four features—lack of pointing, showing, looking at faces, and orienting to name; however, children with DD also showed the first two features.

One line of research employing prospective longitudinal designs has been to screen general pediatric samples in order to identify very young children at risk for ASD and then study the differences between these children and matched groups of children with DD and TD. A series of studies involving two prospective cohorts identified before 2 years of age from a general pediatric screen have been published. The first cohort consisted of children identified using the CHecklist for Autism in

been published. The first cohort consisted of children identified using the CHecklist for Autism in Toddlers (CHAT; Baron-Cohen et al., 1996; Charman et al., 1997; Swettenham et al., 1998). The second cohort consisted of children identified using the Communication and Symbolic Behavior Scales—Developmental Profile (CSBS-DP; Wetherby et al., 2004; Wetherby, Watt, Morgan, & Shumway, 2007). Findings from these studies indicate that core deficits in shifting gaze between people and objects,

from these studies indicate that core deficits in shifting gaze between people and objects, responding to and initiating joint attention, using conventional gestures, and rate of communicating (i.e., number of communicative behaviors per unit of time) distinguish children with ASD from those with DD or TD by 18 months of age. Charman et al. (2003) found that measures of joint attention late in the second year predicted language at 3 years of age. Wetherby et al. (2007) examined a larger set of

second year predicted language at 3 years of age. Wetherby et al. (2007) examined a larger set of predictive measures and found that many measures including joint attention predicted language outcome at 3, but that understanding of language in the second year was the strongest predictor. In addition to social communication deficits, Wetherby et al. (2004) found red flags in repetitive movements with objects and body that distinguished children with ASD in the second year. A second line of

with objects and body that distinguished children with ASD in the second year. A second line of ongoing research is the prospective study of younger siblings of children with ASD, inasmuch as they represent a high genetic risk for ASD. Several very recent publications reporting on studies of infant siblings have documented that delays in social communication begin to be evident by 12–14 months of age in younger siblings who later receive a diagnosis of ASD (Landa & Garrett-Mayer, 2006; Mitchell

age in younger siblings who later receive a diagnosis of ASD (Landa & Garrett-Mayer, 2006; Mitchell et al., 2006; Yirmiya et al., 2006; Zwaigenbaum et al., 2005). Collectively, these findings indicate that children with ASD can be distinguished from those with DD or TD in the second year, based on a combination of lack of typical behaviors and presence of atypical behaviors, and underscore the importance of social communication along with repetitive behaviors in earlier identification of ASD

importance of social communication along with repetitive behaviors in earlier identification of ASD and as targets for early intervention. This growing body of research on early red flags makes it more possible to identify children with ASD when they are toddlers, which emphasizes the pressing need for interventions that are appropriate and effective for very young children with ASD and their families.

INTERACTION OF CORE DEFICITS OF ASD, BRAIN DEVELOPMENT, AND THE LEARNING ENVIRONMENT

Although it is known that ASD is a neurobiological disorder, current theories emphasize the interaction of abnormal brain development, the child’s profile, and the learning environment. Mundy and Burnette (2005) suggested that an initial neurological deficit in infants with autism leads to an early impairment in social orienting and joint attention, which contributes to subsequent neurodevelopmental pathology by an attenuation of social input. This transactional process can lead to a cumulative

pathology by an attenuation of social input. This transactional process can lead to a cumulative spiraling that may compromise subsequent neurological and behavioral development, or may possibly be ameliorated through early intervention. The core deficits in social communication and repetitive behavior that have been identified in the second year of life may attenuate the quality of the social input that children with ASD are exposed to very early in life, and through a transactional process,

that children with ASD are exposed to very early in life, and through a transactional process, have a cascading effect on later developmental outcome and autism symptoms (Wetherby et al., 2007). In other words, the symptoms of ASD may further disrupt brain development and this disruption may be cumulative. Because of the transactional and cumulative detrimental impact on brain development, these core deficits may be critical targets for early intervention in order to enhance social

these core deficits may be critical targets for early intervention in order to enhance social communication skills that are likely to impact the social environment and thus lead to better outcomes for children with ASD. Very early intervention may be viewed as a mechanism to prevent the full unfolding of symptoms of ASD by minimizing the associated secondary abnormalities in brain development. A caregiver may be able to compensate for a child’s deficits in joint attention by ensuring a common

caregiver may be able to compensate for a child’s deficits in joint attention by ensuring a common focus of attention when modeling language. In a longitudinal study of 25 children with ASD, Siller and Sigman (2002) investigated whether caregivers followed the child’s focus of attention and toy engagement during play and the extent to which this predicted language outcomes. Play samples were initially gathered when the children with ASD were a mean age of 50 months. The caregivers of children

gathered when the children with ASD were a mean age of 50 months. The caregivers of children with ASD synchronized their behaviors to their children’s attention and activities as much as caregivers of typically developing children matched on language abilities. However, the children with ASD whose caregivers showed higher levels of synchronization during initial play samples developed better joint attention skills 1 year later and better language outcomes 10 and 16 years later, as compared with

attention skills 1 year later and better language outcomes 10 and 16 years later, as compared with children of caregivers who showed lower levels of synchronization initially. The strongest predictor of a child’s increase in initiating joint attention was the caregiver’s initiation of joint attention that was synchronized to the child’s attentional focus. The strongest predictor of gain in language was caregiver utterances that followed the child’s attentional focus and allowed the child to

was caregiver utterances that followed the child’s attentional focus and allowed the child to continue the ongoing toy engagement. These findings have important implications for targeting joint attention skills in intervention by enhancing the child’s skills, as well as the partner’s ability to support shared attention, and for intervening early to establish or enhance synchronization by caregivers as soon as possible.

Wimpory, Hobson, and Nash (2007) provide further evidence of the association between adult behavior and active social engagement in young children with ASD. They examined clinician behavior during naturalistic play samples immediately prior to episodes of social engagement in 22 children with ASD from 2 to 4 years of age. They operationalized social engagement as the child’s being communicatively available by looking at the adult and making a gesture or other communicative expression. They

available by looking at the adult and making a gesture or other communicative expression. They found that social engagement occurred significantly more often when the adult’s verbal or nonverbal behavior followed the child’s lead or allowed the child to continue his or her attentional focus, as compared with when the adult redirected the child’s action or focus of attention, was silently attentive to the child, or ignored the child. They examined the scaffolding that the adult provided and

to the child, or ignored the child. They examined the scaffolding that the adult provided and found that episodes of social engagement occurred significantly more often when the adult supported social routines, imitated the child and adult repetitions of verbal or nonverbal behavior within a turn. These findings provide observational evidence of temporal contingencies between the quality of adult turns and child social engagement. The authors point out that it may seem paradoxical that the

turns and child social engagement. The authors point out that it may seem paradoxical that the adult behaviors associated with social engagement in young children with ASD are essentially those that have been found to support development in typical children. These findings suggest that a developmental framework may have important implications for designing interventions for young children with ASD.

MEANINGFUL INTERVENTION OUTCOME MEASURES FOR INFANTS AND TODDLERS WITH ASD A critical issue in determining if a treatment is effective is the outcome measure used to study treatment efficacy. Although there are a large number of observational studies delineating the core social communication deficits associated with ASD, there are very few studies that have documented intervention effects on these core deficits. The most widely used outcome measures in intervention research for children with

core deficits. The most widely used outcome measures in intervention research for children with ASD have been changes in IQ and proportion of children placed in a regular classroom after intervention (National Research Council [NRC], 2001). Such outcome measures are problematic, because they may reflect increased compliance or parent preference in placement, rather than meaningful changes. Furthermore, these measures are not applicable with infants and toddlers. Further research is needed to

these measures are not applicable with infants and toddlers. Further research is needed to document meaningful changes that reflect core social communication deficits in young children with ASD. The available research suggests that multiple aspects of joint attention and symbol use should be measured both to describe the participants and to indicate possible treatment outcomes. Even the most effective treatment studies of children with ASD show variable outcomes (NRC, 2001), and a child’s

effective treatment studies of children with ASD show variable outcomes (NRC, 2001), and a child’s social communication skills before treatment may influence the response to treatment. Bono, Daley, and Sigman (2004) found that the relation between amount of intervention and gain in language for children with ASD depended on their ability to respond to joint attention as well as their initial language skills. Systematic measurement of social communication can contribute to our understanding of

skills. Systematic measurement of social communication can contribute to our understanding of the interactions between treatment and child characteristics. For example, treatments that use adult-directed teaching strategies may be more effective for children with better skills in responding to joint attention or language comprehension. Treatments in which the adult synchronizes with the child’s attentional focus may be more effective than more directive approaches for children with limited

attentional focus may be more effective than more directive approaches for children with limited skills in responding to or initiating joint attention. Documenting change in social communication skills is even more critical for younger children, because these skills form the underpinnings of social competence and enable children to participate more successfully in a variety of learning contexts.

THE IMPORTANCE OF EVIDENCE-BASED INTERVENTION FOR YOUNG CHILDREN WITH ASD The NRC (2001) conducted a systematic review of research on educational interventions for children with ASD from birth through 8 years of age. The NRC concluded that a large body of research has demonstrated significant progress in response to intervention with a substantial proportion of children with ASD, using a range of techniques. However, few well-controlled studies with random assignment are available, and

range of techniques. However, few well-controlled studies with random assignment are available, and therefore it is not yet known whether particular intervention approaches are more effective than others. Furthermore, children’s outcomes are variable, with some making substantial progress and others showing slow gains. The committee concluded that there is a convergence of evidence that the following characteristics are essential active ingredients of effective interventions for children with

characteristics are essential active ingredients of effective interventions for children with ASD:

1. Entry into intervention programs as soon as ASD is suspected. 2. Active engagement in intensive instruction for a minimum of 5 hours per day, 5 days a week.
3. Use of repeated planned teaching opportunities that are structured over brief periods of time.
4. Sufficient individualized adult attention on a daily basis. 5. Inclusion of a family component, including parent training. 6. Mechanisms for ongoing assessment with corresponding adjustments in programming.

7. Priority for instruction in (a) functional, spontaneous communication, (b) social instruction across settings, (c) play skills, with a focus on peer interaction, (d) new skill maintenance and generalization in natural contexts, and (e) functional assessment and positive behavior support to address problem behaviors.

Most studies reviewed by the NRC included children 3–5 years of age. Stone and Yoder (2001) found a strong positive association between the number of hours of speech therapy received between the ages of 2 and 3 and language skills at age 4 in 35 toddlers with ASD. These findings suggest that beginning intervention before 3 years of age may have a greater impact than beginning later. Because most children with ASD are not identified until close to 3 years of age, there is little research on

children with ASD are not identified until close to 3 years of age, there is little research on intervention with infants and toddlers at risk for ASD. Evidence-based practice with preschoolers with ASD, as delineated in the report of the NRC (2001), offers the best available guidelines for providing services for younger children until intervention research with infants and toddlers is available. Building on the efforts of the NRC committee, a working group supported by the National Institute

Building on the efforts of the NRC committee, a working group supported by the National Institute of Mental Health from 2002 to 2004 developed guidelines for designing research studies of psychosocial interventions for children with ASD (Smith et al., 2007). The working group delineated the following steps for developing, validating, and disseminating interventions: (1) formulation and systematic application of new intervention through initial efficacy studies using singe-subject design or

application of new intervention through initial efficacy studies using singe-subject design or quasi-experimental group designs, (2) manualization and protocol development with feasibility testing, (3) efficacy studies with large-scale randomized clinical trials (RCTs) and effects demonstrated across sites, and (4) community effectiveness studies with RCTs conducted by clinicians in the community implementing the treatment. The next section of this chapter first defines developmental

community implementing the treatment. The next section of this chapter first defines developmental interventions in terms of the key features. Next, it examines the evidence available on developmental interventions for young children with ASD in relation to the steps delineated by Smith et al. (2007).

CONTINUUM OF INTERVENTION APPROACHES FROM BEHAVIORAL TO DEVELOPMENTAL Although there is consensus on the importance of enhancing social communication abilities for children with ASD, intervention approaches vary greatly and even appear diametrically opposed in regard to the specific methods advocated. In order to examine the critical elements of treatment approaches that impact social communication of children with ASD, it is useful to characterize the key elements of treatment approaches

of children with ASD, it is useful to characterize the key elements of treatment approaches along a continuum ranging from traditional discrete trials, to more contemporary behavioral approaches that utilize naturalistic language teaching techniques, to developmental approaches (Prizant & Wetherby, 1998). The earliest research efforts at teaching speech and language to children with autism used massed discrete trial methods to teach verbal behavior. Lovaas (1977, 1981) provided the most

used massed discrete trial methods to teach verbal behavior. Lovaas (1977, 1981) provided the most detailed account of the procedures for language training using traditional discrete trial behavioral approaches. Outcomes of discrete trial approaches have included improvements in IQ and improvements in communication domains of broader measures, such as the Vineland Adaptive Behavior Scales (VABS; McEachin, Smith, & Lovaas, 1993). A major limitation of a discrete trial approach in language

McEachin, Smith, & Lovaas, 1993). A major limitation of a discrete trial approach in language acquisition is the lack of spontaneity and generalization (NRC, 2001). Lovaas (1977) stated that “the training regime . . . its use of ‘unnatural’ reinforcers, and the like may have been responsible for producing the very situation-specific, restricted verbal output which we observed in many of our children” (p. 170). In a review of research on discrete trial approaches, it was noted by Koegel (1995)

(p. 170). In a review of research on discrete trial approaches, it was noted by Koegel (1995) that “not only did language fail to be exhibited or generalized to other environments, but most behaviors taught in this highly controlled environment also failed to generalize” (p. 23). The limitations of the traditional behavioral approaches stimulated the advent of both behavioral and developmental approaches that incorporate more naturalistic strategies. There is now a large body of empirical

approaches that incorporate more naturalistic strategies. There is now a large body of empirical support for more contemporary behavioral approaches using naturalistic teaching methods that demonstrate efficacy for teaching not only speech and language, but also communication (Hepting & Goldstein, 1996). Examples of naturalistic behavioral approaches include the use of natural language paradigm (Koegel, O’Dell, & Koegel, 1987), incidental teaching (Hart, 1985; McGee, Krantz, & McClannahan,

(Koegel, O’Dell, & Koegel, 1987), incidental teaching (Hart, 1985; McGee, Krantz, & McClannahan, 1985; McGee, Morrier, & Daly, 1999), time delay and milieu intervention (Charlop, Schreibman, & Thibodeau, 1985; Charlop & Trasowech, 1991; Kaiser, 1993; Kaiser, Yoder, & Keetz, 1992), and pivotal response training (Koegel, 1995; Koegel, Camarata, Koegel, Ben-Tall, & Smith, 1998). These approaches use systematic teaching trials that have the following key features: (1) initiated by the child and

use systematic teaching trials that have the following key features: (1) initiated by the child and focusing on the child’s interest, (2) interspersed and embedded in functional activities, and (3) using natural reinforcers that follow what the child is trying to communicate. There are only a few studies, all using single-subject design, that have compared traditional discrete trials with naturalistic behavioral approaches. These studies have reported that naturalistic approaches are more

behavioral approaches. These studies have reported that naturalistic approaches are more effective at leading to generalization of language gains to natural contexts (Koegel et al., 1998; Koegel, Koegel, & Surratt, 1992; McGee et al., 1985). There are numerous developmental intervention approaches that are described in the literature (e.g., Greenspan and Weider, 1997; Klinger & Dawson, 1992; Prizant, Wetherby, & Rydell, 2000; Rogers & Lewis, 1989). A common feature of developmental approaches

Wetherby, & Rydell, 2000; Rogers & Lewis, 1989). A common feature of developmental approaches is that they are child-directed. The environment is arranged to provide opportunities for communication; the child initiates the interaction or teaching episode, and the adult follows the child’s lead by being responsive to the child’s intentions and imitating or expanding on the child’s behavior. Developmental approaches share many common key features with contemporary naturalistic behavioral

Developmental approaches share many common key features with contemporary naturalistic behavioral approaches and are compatible along many if not most dimensions (Prizant & Wetherby, 1998), thus muddying the distinctions between them. The following section delineates the key features of developmental approaches.

KEY FEATURES OF DEVELOPMENTAL APPROACHES Just exactly what constitutes a developmental approach to treatment is elusive in the literature on children with ASD. Here we attempt to delineate the key features that are associated with a developmental perspective and incorporated into most developmental approaches. Because there is no agreement on how many of these features are required for an approach to be considered developmental, and because some of these features are shared with contemporary

to be considered developmental, and because some of these features are shared with contemporary behavioral approaches, it is more useful to think of a continuum of approaches, with traditional behavioral on one end, which would likely not incorporate any of these features; contemporary behavioral in the middle, which would incorporate some of these features; and developmental on the other end, which would incorporate most if not all of these features (Prizant & Wetherby, 2005). Those

end, which would incorporate most if not all of these features (Prizant & Wetherby, 2005). Those contemporary behavioral approaches that incorporate many of these features would fall closer to the developmental end of the continuum. Many of these features are consistent with the recommendations of the NRC (2001) and compatible with contemporary behavioral approaches.

DEVELOPMENTAL FRAMEWORK FOR TARGETING SOCIAL COMMUNICATION GOALS AND STRATEGIES A hallmark of developmental approaches is the use of a developmental framework to prioritize individualized goals and objectives. The expansive literature on typical development provides a rich theoretical and empirical basis for both understanding core social communication deficits in ASD and guiding developmentally appropriate interventions. In their pioneering work, Bates and colleagues (Bates, 1976; Bates,

appropriate interventions. In their pioneering work, Bates and colleagues (Bates, 1976; Bates, Camaioni, & Volterra, 1975) provided a developmental pragmatics framework to describe the emergence of communication and language from intentional to symbolic to linguistic communication. This work was monumental in going beyond the models of Piaget and Vygotsky to influence our understanding of how children proceed through these transitions in typical development and to offer a road map to guide

children proceed through these transitions in typical development and to offer a road map to guide clinicians (Bates, O’Connell, & Shore, 1987). Developmental theories view language learning as an active process in which children “construct” or build knowledge and shared meanings based on emotions and interactions with people and experiences in their environment (Bates, 1979; Bloom, 1993; Tronick, 1989). The work of Stern (1985) has also been influential in our understanding of the core

Tronick, 1989). The work of Stern (1985) has also been influential in our understanding of the core deficits of ASD. Stern described three achievements that contribute to a child’s sense of self and capacity to use language to share experiences about events and things, and thus provide the foundation for social communication development—sharing the focus of attention (“interattentionality”), sharing of intentions (“interintentionality”), and sharing of affective states (“interaffectivity”).

of intentions (“interintentionality”), and sharing of affective states (“interaffectivity”). These three achievements lead to the capacity of “intersubjective relatedness” as the infant discovers that he or she has a mind, that other people have minds, and that inner subjective experiences can be shared. From a developmental perspective, the language deficits of children with ASD reflect core deficits in these social underpinnings—shared attention, shared affect, and shared intentions—leading

in these social underpinnings—shared attention, shared affect, and shared intentions—leading to difficulties in sharing experiences (i.e., intersubjective relatedness).

Pragmatic/social interactive theories have placed great emphasis on the context of social interaction in language development (Bates, 1976; Bloom & Lahey, 1978; McLean & Snyder-McLean, 1978; Sameroff, 1987). Children are viewed as active participants who learn to affect the behavior and attitudes of others through active signaling and gradually learn to use more sophisticated and conventional means to communicate through caregivers’ contingent social responsiveness (Dunst, Lowe, & Bartholomew,

to communicate through caregivers’ contingent social responsiveness (Dunst, Lowe, & Bartholomew, 1990; Sameroff, 1987). Proponents of developmental pragmatic theory believe that child development can be understood only by analysis of the interactive context, not simply by focusing solely on the child or the caregivers, because successful communication involves reciprocity and mutual negotiation (Bates, 1976; Bruner, 1978, 1981). Reflecting the theory of Vygotsky (1986), that the acquisition of

1976; Bruner, 1978, 1981). Reflecting the theory of Vygotsky (1986), that the acquisition of communicative symbols is a social enterprise, Tomasello, Kruger, and Ratner (1993) suggested that two components are essential for a child to develop language—development within a cultural context that structures events for the child, and the child’s special capacity to learn from this cultural structuring. The structuring for language acquisition entails routine cultural activities that employ

The structuring for language acquisition entails routine cultural activities that employ coordinated attention and delineated roles. The child’s capacity requires the social-cognitive skills of being able to attribute intentions to others and to see an event from another’s perspective. Wetherby, Schuler, and Prizant (1997) identified three significant principles drawn from the developmental literature that are critical for children with ASD and should be incorporated into a developmental

literature that are critical for children with ASD and should be incorporated into a developmental intervention. First, social communication development involves continuity from preverbal to verbal communication. That is, the development of preverbal communication is a necessary precursor to the development of the intentional use of language to communicate. For children with ASD who are not yet talking, emphasis should be placed on developing preverbal social communication skills and words

talking, emphasis should be placed on developing preverbal social communication skills and words should be mapped onto preverbal communication skills. Second, being a competent communicator is the outcome of a developmental interaction of the child’s cognitive, social-emotional, and language capacities and the language learning environment. A child’s developmental profile across these domains should provide the basis for decision making for communication enhancement. Third, in a developmental

provide the basis for decision making for communication enhancement. Third, in a developmental framework, all behavior should be viewed in reference to the child’s relative level of functioning across developmental domains. For example, many of the challenging behaviors used by children with ASD can be understood as attempts to communicate if such behavior is interpreted relative to developmental discrepancies, and as coping strategies in the face of significant communicative limitations. These

discrepancies, and as coping strategies in the face of significant communicative limitations. These rich developmental theories, and the research that they have generated, offer a framework for understanding a child’s developing competencies in relationship to the social context and how these patterns change over developmental transitions, and this framework is woven into developmental interventions. Many patterns and sequences of development in children with ASD are similar to those in typical

Many patterns and sequences of development in children with ASD are similar to those in typical development, although the timing of acquisition is different, and therefore the combination of skills (i.e., discrepancies in skill level across social, cognitive, and linguistic domains) that a child with ASD has at any one point in time is unlikely to be seen in typical development. Too rigid an interpretation of a developmental model has resulted in “readiness models” that require that a certain

of a developmental model has resulted in “readiness models” that require that a certain level of ability must be reached before working on subsequent skills (Wetherby et al., 1997). Working within a developmental model does not imply teaching to a developmental checklist. Rather than merely offering a guideline for sequencing communication objectives, developmental information provides a frame of reference for understanding a child’s behavioral competencies and for individualizing appropriate,

reference for understanding a child’s behavioral competencies and for individualizing appropriate, developmentally sensible goals and objectives. Furthermore, a developmental framework offers strategies used by caregivers of typically developing children to support communication and language development.

FOCUS ON THE CORE DEFICITS ASSOCIATED WITH AUTISM The core deficits of ASD affect many aspects of social communication and learning. Developmental approaches focus on the core deficits of children with ASD, such as expanding the use of gestures, initiating verbal and nonverbal communication, understanding and using words with referential meaning, initiating and responding to joint attention, and reciprocity in interaction, because these skills predict later cognitive, social, and language

and reciprocity in interaction, because these skills predict later cognitive, social, and language outcomes in children with ASD. Developmental approaches usually advocate the use of nonspeech communication systems (e.g., sign language or picture communication) to jump-start the speech system and boost cognitive and social underpinnings. When social communication difficulties are present, parents face significant challenges in learning to modify their interaction style and the environment in

face significant challenges in learning to modify their interaction style and the environment in order to ensure successful communication exchanges. Therefore, developmental interventions focus not only on targeting goals to address directly the core deficits of the child, but also on targeting strategies for parents to use to support social communication development.

A FAMILY-CENTERED APPROACH TO MEET THE FAMILY’S NEEDS, CONCERNS, AND PRIORITIES A family-centered approach holds the notion that parents and caregivers are the most knowledgeable source of information about the child and are partners in the assessment and intervention process (McWilliam, 1992). Respecting family members’ perceptions, priorities, and preferences, planning for active participation of family members, sharing in decision making, and building unity are key components of an

of family members, sharing in decision making, and building unity are key components of an effective family-centered program (Dunst, Trivette, & Deal, 1988; Woods & Wetherby, 2003). In a developmental intervention the child is recognized as part of a larger family system. It is this larger system that is the focus of assessment and intervention efforts. Cultural and family values are considered throughout the process. Families tend to be more involved in the achievement of goals if they have

throughout the process. Families tend to be more involved in the achievement of goals if they have been stakeholders in selecting them. Research has shown that parents recognize that working together toward a common goal has a positive impact on their child (Sperry, Whaley, Shaw, & Brame, 1999). The review of research by the NRC (2001) identified family involvement as a key component of effective interventions for children with ASD. Families are maximally involved in the services for infants

interventions for children with ASD. Families are maximally involved in the services for infants and toddlers with ASD because of the simple fact of the child’s age and reliance on parents for nurturance. Although the amount and type of participation by parents in the intervention process varies significantly—a parent’s role may range from primary teacher to observer and informant—two results are clear. First, evidence of the effectiveness of parent-implemented intervention for children with

clear. First, evidence of the effectiveness of parent-implemented intervention for children with varying types of developmental delays, and specifically for children with ASD, has been consistently documented across a wide range of adaptive, behavioral, social, and communication child outcomes (Koegel, Bimbela, & Schreibman, 1996; McClannahan, Krantz, & McGee, 1982; Schreibman, Kaneko, & Koegel, 1991; Seifer, Clark, & Sameroff, 1991). Second, parents are able to learn a variety of broad and

1991; Seifer, Clark, & Sameroff, 1991). Second, parents are able to learn a variety of broad and specific intervention strategies to teach their children functional and meaningful outcomes (Kaiser, Hancock, & Nietfeld, 2000). Training parents to implement intervention strategies during everyday activities is a logical method to achieve the intensity of active engagement needed for young children with ASD.

Parent-implemented intervention that results in optimal learning requires planning and problem solving with the parents to ensure that sufficient instructional opportunities are attached to specific routines and activities (Strain, McGee, & Kohler, 2001). Interventionists providing interactive toys, visual supports, or social games that they might use in a clinician-directed session must provide adequate demonstration and guided practice to the parent on what, how, when, and how often to use

adequate demonstration and guided practice to the parent on what, how, when, and how often to use the specific strategies with the child. For example, simply providing or arranging an environment that supports communication, play, and social interaction has not produced adequate effects (Strain et al., 2001). McGee and Morrier (2005) recommend that caregivers be instructed on how to “market” new toys or materials to the child. Research conducted on the effectiveness of parent-implemented

new toys or materials to the child. Research conducted on the effectiveness of parent-implemented interventions far exceeds research on methods of training parents to implement interventions. Developmental approaches incorporate the existing research that supports the use of adult learning strategies that encompass the adult’s experiences and interests, demonstration and specific feedback, problem-solving strategies to increase independent decision making and generalized use of information,

strategies to increase independent decision making and generalized use of information, self-assessment on effectiveness, and sequential instruction (Buysse & Wesley, 2005; McGee & Morrier, 2005). The key element of family-centered practice that is incorporated into developmental interventions is individualization for each family based on the family’s priorities, concerns, and interests (Allen & Petr, 1996; Sandall, McLean, & Smith, 2000). Developmental interventions are designed so that family

1996; Sandall, McLean, & Smith, 2000). Developmental interventions are designed so that family members, as well as the child, benefit from involvement. Interventionists must recognize that time spent by parents working with their child can enhance their confidence and competence to interact with their child, increase the child’s independence in family activities, and improve the quality of the family’s life (Turnbull & Ruef, 1997).

PROVIDING INTERVENTION IN NATURAL ENVIRONMENTS In developmental approaches, it is recognized that most learning in childhood takes place in the social context of daily activities and experiences. Efforts to support a child’s development occur with caregivers and familiar partners in everyday activities in a variety of social situations, and not primarily by working with a child in isolation. Natural environments are the everyday routines, activities, and places that are typical or natural for

environments are the everyday routines, activities, and places that are typical or natural for the family and usually include locations such as the home, child care facility, homes of extended family and friends, and other community locations such as a park or church. Daily routines such as dressing, mealtime, and play provide excellent opportunities to embed teaching of objectives that are functional and meaningful and therefore naturally support acquisition and generalization of learning

and meaningful and therefore naturally support acquisition and generalization of learning (Woods & Wetherby, 2003). Most young children spend a majority of their waking hours engaged in frequently occurring play and caregiving routines that can have a joint focus of attention, a logical and predictable sequence, turn taking, and repetition, when carefully analyzed for maximal teaching opportunities and supportive instructional strategies. Developmental approaches embed intervention into

and supportive instructional strategies. Developmental approaches embed intervention into everyday routines, activities, and places and require interventionist and parent consideration of the sequence, ease of strategy use, and frequency of opportunity within various routines (Strain et al., 2001; Woods Cripe & Venn, 1997). A variety of naturalistic language intervention strategies (e.g., Goldstein, 2002; Hwang & Hughes, 2000; Kaiser et al., 2000) can be used as appropriate. It is well

Goldstein, 2002; Hwang & Hughes, 2000; Kaiser et al., 2000) can be used as appropriate. It is well documented that generalization of child and family outcomes is enhanced by embedding intervention in family-preferred routines and contexts (Dunst, Hamby, Trivette, Raab, & Bruder, 2000; Woods, Kashinath & Goldstein, 2004). Furthermore, incorporating intervention into existing family routines provides a context for the family and clinician to develop an active, mutually respectful partnership.

The philosophy of intervention in natural environments encompasses more than just the location of services and includes the utilization of naturalistic interventions. Interventions in the natural environment are approaches that maximize teaching and learning throughout the day, using routines, materials, and people common to the family and the child (Dunst et al., 2000; Woods Cripe & Venn, 1997). They include the caregiver(s), with the child, undertaking the activities, events, and chores of

They include the caregiver(s), with the child, undertaking the activities, events, and chores of daily life as defined by the family’s values and choices. The basic tenets of intervention in natural environments include the following: (1) Children learn functional and meaningful skills, (2) learning occurs within daily caregiving, play, and social interactions, and (3) caregivers mediate the teaching and learning process for the child as it occurs. This philosophy is compatible with many of the

and learning process for the child as it occurs. This philosophy is compatible with many of the contemporary behavioral and developmental approaches used for children with ASD (Dunlap & Fox, 1999; McGee et al., 1999; Prizant et al., 2000), but is difficult to reconcile with traditional discrete trial interventions (e.g., Lovaas, 1981). The NRC (2001) recommended that children with ASD be given functional and meaningful opportunities for learning in their natural environments to promote

given functional and meaningful opportunities for learning in their natural environments to promote generalization. The embedding of intervention within typical daily routines and community activities focuses on the generalization of skills for the child while reducing the stress of specialized training activities irrelevant to the child’s challenging behaviors for families (Dunlap & Fox, 1999; Horner, O’Neill, & Flannery, 1993). Providing intervention of adequate intensity for very young

Horner, O’Neill, & Flannery, 1993). Providing intervention of adequate intensity for very young children with ASD is challenging for the health care and education systems. Services delivered by professionals within Part C of the Individuals with Disabilities Education Improvement Act of 2004 (IDEA; Public Law 108-446; U.S. Department of Education, 2004) average 2–3 hours per week. In only a few states that have designated intensive services for children with ASD, services may be provided for as

that have designated intensive services for children with ASD, services may be provided for as much as 20+ hours per week. Although the intensity of intervention needed for optimal outcomes is not yet determined for infants and toddlers with ASD, it has been shown that the amount of time spent in active and productive engagement impacts the outcomes for preschoolers, with a critical minimum threshold of at least 5 hours per day, 5 days per week (NRC, 2001). Children with ASD participating in

of at least 5 hours per day, 5 days per week (NRC, 2001). Children with ASD participating in activities with other children would not be expected to learn simply by being there. Inclusive opportunities must have adequate support for a child with ASD to learn from engagement with the materials, activities, and other children (Strain et al., 2001). Providing intervention in the natural environment is a way to maximize learning throughout the day and thus achieve the intensity of active engagement

a way to maximize learning throughout the day and thus achieve the intensity of active engagement that is critical for children with ASD.

NATURALISTIC TEACHING STRATEGIES Both developmental and contemporary behavioral approaches have emphasized the importance of teaching strategies that encourage children with communication impairments to initiate communication and language use. In the developmental literature, the pragmatics movement has led to strategies that follow the child’s lead to develop communication and conversational abilities (MacDonald & Carroll, 1992; Yoder, Warren, McCathren, & Leew, 1998). The developmental

abilities (MacDonald & Carroll, 1992; Yoder, Warren, McCathren, & Leew, 1998). The developmental literature emphasizes the importance of caregiver responsivity to enhance communication and language and the shift in the balance of power or control to the child (see MacDonald, 1989; Prizant & Wetherby, 1998). If there is not a balance of power or shared control in interactions with a child, the child may become a passive partner or use challenging behavior to claim power (MacDonald, 1989). The

may become a passive partner or use challenging behavior to claim power (MacDonald, 1989). The contemporary behavioral literature has described “incidental language teaching” as a method of achieving a more naturalistic approach to language training. In contrast to a discrete trial format in which the trainer controls the interaction, an incidental teaching episode is initiated by the child. The adult waits for the child to initiate a communicative behavior (i.e., gesture, vocalization),

The adult waits for the child to initiate a communicative behavior (i.e., gesture, vocalization), focuses attention on the child and the child’s topic, asks for a language elaboration or models a verbal response for the child to imitate, and then indicates the correctness of the child’s language or gives the child what is asked for. Incidental teaching has been found to enhance generalization in teaching language to children with severe disabilities, including ASD (see Hart, 1985, and Kaiser,

teaching language to children with severe disabilities, including ASD (see Hart, 1985, and Kaiser, 1993, for reviews). Numerous strategies are described in the literature for designing the environment to encourage the initiation of communication (Prizant & Wetherby, 1993). The developmental literature has emphasized the importance of “engineering” or arranging the environment to provide opportunities and reasons for the child to initiate communication. The contemporary behavioral literature has

and reasons for the child to initiate communication. The contemporary behavioral literature has described specific strategies to occasion language use, such as to delay at critical moments in natural routines and to interrupt chains of behavior by removing an object needed to complete a task (Kaiser, 1993; Rowland & Schweigert, 1993). By making the initiation of communication a priority, natural opportunities for communicating can be capitalized on in all settings.

WHAT IS THE EVIDENCE BASE FOR DEVELOPMENTAL INTERVENTIONS FOR YOUNG CHILDREN WITH ASD?

Using the framework of Smith et al. (2007), empirical research studies on developmental interventions are summarized in Table 7.1, with the developmental features incorporated in each study indicated. We have restricted this review to research studies meeting the following criteria: (1) published in a peer-reviewed journal, (2) used an experimental research design, (3) included children 3 years of age or younger, and (4) reported at least one social communication outcome measure. We have

of age or younger, and (4) reported at least one social communication outcome measure. We have organized the research into the following levels of experiment research design, with true experimental design being the highest level of evidence:

| Study                                            | Child outcome measures                                                                 | n for ASD treatment group | Age in months at entry | Developmental framework | Core deficits | Family guided | Natural environments | Naturalistic strategies |

|--------------------------------------------------|----------------------------------------------------------------------------------------|---------------------------|------------------------|-------------------------|---------------|---------------|----------------------|-------------------------|

| **True experimental group designs**              |                                                                                        |                           |                        |                         |               |               |                      |                         |

| Aldred, Green, & Adams (2004)                    | Autism symptoms, parent synchrony, and communication rate                                | 14                        | M = 48                 | ×                       | ×             | ×             | ×                    | ×                       |

| Drew et al. (2002)                               | Parent-report measures of language with CDI                                            | 12                        | M = 23                 | ×                       | ×             | ×             | ×                    | ×                       |

| Kasari, Freeman, & Paparella (2006)              | Autism symptoms, Early Social Communication Scales (ESCS), play, and caregiver–child interaction | 41                        | M = 43                 | ×                       | ×             |               | ×                    | ×                       |

| McConachie, Randle, Hammal, & LeCouteur (2005)   | Autism symptoms, language with CDI, and parent outcomes                                  | 26                        | M = 38                 | ×                       | ×             | ×             |                      | ×                       |

| Yoder & Stone (2006)                             | Object exchange turn taking, requesting, initiating joint attention                      | 36                        | M = 31                 | ×                       | ×             |               |                      | ×                       |

| **Quasi-Experimental Group Designs**             |                                                                                        |                           |                        |                         |               |               |                      |                         |

| Boulware, Schwartz, Sandall, & McBride (2006)    | Developmental level, social communication with CSBS                                      | 8                         | M = 25                 | ×                       | ×             | ×             | ×                    | ×                       |

| Mahoney & Perales (2005)                         | Parent interaction and child pivotal behavior                                          | 20                        | M = 32                 | ×                       | ×             | ×             | ×                    | ×                       |

| McGee, Morrier, & Daly (1999)                    | Generalized use of language and time spent in proximity with peers                       | 28                        | M = 29                 | ×                       | ×             | ×             | ×                    | ×                       |

| Rogers & DiLalla (1991)                          | Developmental level, language measures                                                 | 49                        | M = 46                 | ×                       | ×             |               | ×                    | ×                       |

| Wetherby & Woods (2006)                          | Social communication measured with CSBS                                                | 17                        | M = 18                 | ×                       | ×             | ×             | ×                    | ×                       |

| **Single-subject experimental designs**          |                                                                                        |                           |                        |                         |               |               |                      |                         |

| Hancock & Kaiser (2002)                          | Rate and spontaneous use of language targets                                           | 4                         | 35–54                  | ×                       | ×             |               |                      | ×                       |

| Hwang & Hughes (2000)                            | Eye contact, joint attention, and motor imitation                                      | 3                         | 32–43                  | ×                       | ×             |               |                      | ×                       |

| Ingersoll, Dvortcsak, Whalen, & Sikora (2005)    | Rate of spontaneous use of language                                                    | 3                         | 32–46                  | ×                       | ×             |               |                      | ×                       |

| Kaiser, Hancock, & Nietfeld (2000)               | Rate and spontaneous use of language targets                                           | 6                         | 35–54                  | ×                       | ×             | ×             | ×                    | ×                       |

| Kashinath, Woods, & Goldstein (2006)             | Rate of communicative gestures, sounds, or words                                       | 5                         | 33–65                  | ×                       | ×             | ×             | ×                    | ×                       |

| Rogers et al. (2006)                             | Spontaneous speech, social communication with ADOS-G                                     | 10                        | 20–65                  | ×                       | ×             |               |                      | ×                       |
 1. Single-subject experimental treatment designs to examine specific intervention strategies that are incorporated in developmental interventions.

2. Quasi-experimental group treatment designs to demonstrate the feasibility of implementing the model and document group treatment effects.
3. True experimental group treatment designs with randomized clinical trials to document group treatment effects under controlled conditions.

Single-Subject Experimental Designs Single-subject designs are intended to demonstrate causal relations between specific treatment conditions and dependent variables measured at baseline and during different phases of treatment (Kazdin, 2003). This experimental design does not lend itself easily to developmental approaches that implement a package of intervention strategies. However, there have been six recent single-subject design studies that have incorporated some developmental features and

six recent single-subject design studies that have incorporated some developmental features and add to the evidence base of developmental approaches for young children with ASD. Hwang and Hughes (2000) evaluated the effects of a social interactive training on nonverbal social communication skills of three preschoolers with ASD. The social interactive training, adapted from that described by Klinger and Dawson (1992), was implemented by a clinician and consisted of four strategies: (1)

by Klinger and Dawson (1992), was implemented by a clinician and consisted of four strategies: (1) environmental arrangement, (2) natural reinforcers, (3) a 5-second wait with an expectant look, and (4) contingent imitation. A multiple-baseline design across participants demonstrated increases in outcome measures of eye contact, joint attention, and motor imitation. Generalization was found with eye contact and motor imitation, but not with joint attention. Measures of social validation

with eye contact and motor imitation, but not with joint attention. Measures of social validation supported the fact that positive changes in child behavior had occurred. Two different single-subject design studies have been conducted by Kaiser and colleagues (Hancock & Kaiser, 2002; Kaiser et al., 2000) to demonstrate the effectiveness of enhanced milieu teaching (EMT) on social communication of children with ASD. EMT is a hybrid approach that blends contemporary behavioral and developmental

children with ASD. EMT is a hybrid approach that blends contemporary behavioral and developmental strategies and consists of three components: (1) environmental arrangement to promote child engagement with activities and partners, (2) responsive interaction techniques to build social interaction with new language forms, and (3) milieu teaching procedures including modeling, mand-model, time delay, and incidental teaching. Kaiser et al. (2000) demonstrated the effects of training six parents of

and incidental teaching. Kaiser et al. (2000) demonstrated the effects of training six parents of children with ASD to use the naturalistic language intervention strategies during training sessions and maintain the use at follow-up sessions 6 months later. Child effects generalized and were maintained for four of the six children. Hancock and Kaiser (2002) demonstrated the effects of EMT delivered by interventionists to four children with ASD. All four children increased specific language

by interventionists to four children with ASD. All four children increased specific language targets and maintained these increases at 6-month follow-up observations. Collectively, these findings suggest that the components of EMT as a package were effective for these children with ASD.

Ingersoll, Dvortcsak, Whalen, and Sikora (2005) implemented a single-subject, multiple-baseline design across participants to examine the effectiveness of a developmental social-pragmatic (DSP) language intervention for three children with ASD. The DSP intervention was implemented by a clinician for 90 minutes per week for 10 weeks and included the following components: (1) following the child’s lead, (2) environmental arrangement, (3) responding to all of the child’s communicative attempts,

lead, (2) environmental arrangement, (3) responding to all of the child’s communicative attempts, (4) emphasizing appropriate affect, and (5) modeling language without elicitation. The authors demonstrated increases in use of spontaneous speech in all three children (although for one child the baseline was not stable) and generalization to parent–child play samples. They suggested that these findings provide preliminary support for the conclusion that direct elicitation is not necessary for

provide preliminary support for the conclusion that direct elicitation is not necessary for increases in rate of spontaneous language. Although it is broadly accepted that parent-implemented interventions can have positive effects on child communication, there is limited research on parents implementing intervention outside a clinical setting. Preliminary research on embedding intervention within daily routines has shown limited generalization of effects. Kashinath, Woods, and Goldstein (2006)

daily routines has shown limited generalization of effects. Kashinath, Woods, and Goldstein (2006) examined the effects of facilitating generalized use of naturalistic teaching strategies by parents of five preschool children with ASD. Using a multiple-baseline design across teaching strategies, they taught each parent three of the following six strategies: environmental arrangement, natural reinforcement, time delay, contingent imitation, modeling, and gestural/visual cues. The programming of

time delay, contingent imitation, modeling, and gestural/visual cues. The programming of generalization occurred by systematic selection of routines and by embedding intervention in multiple routines. Parents learned to use two teaching strategies in target routines to synchronize with their children’s attentional focus and address individualized communication objectives. Routines were categorized into one of six classes: play routines, outdoor activities or recreation, caregiving routines,

into one of six classes: play routines, outdoor activities or recreation, caregiving routines, household chores, community activities, and other disability-related routines. For example, playing with puzzles, blocks, ball, bubbles, and music toys were exemplars of indoor play routines. Diapering, hand washing, bath, and mealtime were caregiving routines. No consistent differences were noted in the frequency of strategy use across routines from the same routine class and from a different routine

frequency of strategy use across routines from the same routine class and from a different routine class. Generalization data were collected by measuring strategy use in untrained routines both within the same routine class and across classes of routines. All five parents demonstrated proficient use of teaching strategies and generalized their use across routines both in the same class and across classes of routines. The intervention had positive effects on communication outcomes for four of

classes of routines. The intervention had positive effects on communication outcomes for four of the five children. All five parents perceived the intervention to be useful in facilitating the child’s communication.

Rogers and colleagues (2006) conducted a single-subject design study to compare the Denver Model, which is a blend of contemporary behavioral and developmental approaches, with Prompts for Restructuring Oral Muscular Phonetic Targets (PROMPT), which is a developmental approach focused on speech production disorders. Ten nonverbal children with ASD were matched in pairs and randomly assigned to one of these two treatments. The outcome measures included spontaneous speech samples, as well as

one of these two treatments. The outcome measures included spontaneous speech samples, as well as social communication behaviors measured by the Autism Diagnostic Observation Schedule–Generic (ADOS-G; Lord, Rutter, DiLavore, & Risi, 1999) and the Social Communication Questionnaire (SCQ; Rutter, Bailey, Berument, Lord, & Pickles, 2001). The treatments were implemented in 12 one-hour weekly therapy sessions. Eight of the 10 children used five or more functional words spontaneously after

therapy sessions. Eight of the 10 children used five or more functional words spontaneously after treatment, and there were no differences in acquired language skills between treatments. Collateral gains in early social communication behaviors were observed in both treatments. More children in the Denver Model showed gains in imitation, and more children in the PROMPT treatment demonstrated gains in functional play. Children who were the best responders to treatment had mild to moderate

gains in functional play. Children who were the best responders to treatment had mild to moderate symptoms of autism, better motor imitation skills, and emerging joint attention skills. Collectively, these single-subject design studies suggest that components of developmental interventions as a package were effective for these children with ASD. The findings of these studies offer important preliminary data for developmental interventions by providing (1) evidence that naturalistic teaching

data for developmental interventions by providing (1) evidence that naturalistic teaching strategies lead to improvements in core social communication deficits in children with ASD, (2) evidence that parents of children with ASD can learn multiple strategies to synchronize with the child’s attentional focus and generalize use of these strategies across routines in natural environments, and (3) evidence of the impact of parent-implemented strategies on communication outcomes for children with

evidence of the impact of parent-implemented strategies on communication outcomes for children with ASD.

Quasi-Experimental Group Designs Many developmental interventions have completed the process of manualization, meaning that a detailed treatment manual that specifies the treatment protocol has been developed for each of them. Examples include the Denver Model (Rogers & DiLalla, 1991; Rogers & Lewis, 1989; Rogers, Hall, Osaki, Reaven, & Herbison, 2000), Floortime or Developmental, Individual-Difference, Relationship-Based Model (DIR; Greenspan, 1992; Greenspan & Wieder, 1997, 1998, 2000), the

Relationship-Based Model (DIR; Greenspan, 1992; Greenspan & Wieder, 1997, 1998, 2000), the Walden Program (McGee et al., 1999), More than Words (Sussman, 1999), Social Communication, Emotional Regulation, Transaction Supports Model (SCERTS; Prizant, Wetherby, Rubin, Laurent, & Rydell, 2006; Prizant et al., 2000), Do–Watch–Listen–Say (Quill, 2000), Relationship Development Intervention (RDI; Gutstein & Sheely, 2002), and Responsive Teaching (RT; Mahoney & Perales, 2005). However,

(RDI; Gutstein & Sheely, 2002), and Responsive Teaching (RT; Mahoney & Perales, 2005). However, quasi-experimental studies that document the efficacy of these developmental interventions have been published for only a small subset of these approaches. Two studies have reported on the effectiveness of center-based developmental interventions with young children with ASD. Rogers and DiLalla (1991) were the first to report outcomes using a developmentally based curriculum for preschool children

were the first to report outcomes using a developmentally based curriculum for preschool children with ASD. They reported the results for 49 children, with a mean age of 46 months, who received 22.5 hours per week of a center-based program for at least 6 months, as compared with children with DD or other psychiatric disorders. The children with ASD made more significant gains than the comparison group in their developmental profiles and on language measures. McGee, Morrier, and Daly (1999)

group in their developmental profiles and on language measures. McGee, Morrier, and Daly (1999) described the curriculum for the Walden Toddler Program, which used incidental teaching in a child care center and home-based component. Goals were selected by an interdisciplinary team. The intervention components included environmental arrangement and incidental teaching procedures, including vigorous speech shaping, active social instruction, wait–ask–say–show–do, and promotion of engagement. In a

speech shaping, active social instruction, wait–ask–say–show–do, and promotion of engagement. In a project evaluation, which was a weak pretest–posttest quasi-experimental design, McGee et al. reported good verbal outcomes for 28 toddlers with ASD who had entered the center-based incidental teaching program at the Walden Toddler Program at Emory University at a mean age of 29 months. At the time of exit after 6 months in the Walden Program, 82% of the toddlers used meaningful words, an increase

exit after 6 months in the Walden Program, 82% of the toddlers used meaningful words, an increase from 36% at program entry. On a measure of the amount of time the children spent in proximity to other children, 71% of the children with ASD showed improvement. Because there was no control group, it is not possible to sort out treatment effects from maturation and other confounding variables or to determine whether this sample of children with ASD is representative.

Boulware, Schwartz, Sandall, and McBride (2006) developed Project DATA (Developmentally Appropriate Treatment for Autism) to bridge the features of developmental and behavioral programs for children with ASD under 3 years of age. The primary components of Project DATA included a high-quality inclusive early childhood program, extended instructional time, and family support, totaling 16 hours per week. The focus was on embedding social communication learning opportunities using naturalistic

per week. The focus was on embedding social communication learning opportunities using naturalistic teaching strategies. The authors reported pretest and posttest results for eight children ranging from 18 to 29 months at program entry, with an average of 13.5 months in the program. Six of the eight children demonstrated increases in developmental level, and five of seven children given the CSBS showed substantial improvements. Four of seven families contacted the following year indicated that

showed substantial improvements. Four of seven families contacted the following year indicated that the child with ASD was placed full-time in a regular education classroom. This study is weak in terms of the research design and small sample size but demonstrates the feasibility of implementing an inclusive educational program for toddlers with ASD. Mahoney and Perales (2005) compared the effects of a relationship-focused (RF) intervention with a group of 20 children with ASD and a control

of a relationship-focused (RF) intervention with a group of 20 children with ASD and a control group of 30 children with DD. The RF intervention consisted of teaching parents a set of responsive interaction strategies designed to enhance the following pivotal developmental behaviors in their children: attention, persistence, interest, initiation, cooperation, joint attention, and affect, in 1-hour weekly sessions for a year. The groups were matched on all measures of demographic or

in 1-hour weekly sessions for a year. The groups were matched on all measures of demographic or developmental characteristics except age, and the ASD group was significantly older. Both groups made significant increases, with moderate to large effect sizes in cognitive, communication, and socioemotional functioning based on a play-based assessment and parent-report measures. Furthermore, children’s improvements were related to increases in both parents’ responsiveness and the children’s gains

improvements were related to increases in both parents’ responsiveness and the children’s gains in pivotal behaviors. Although the effects of maturation or other treatments cannot be ruled out with this research design, the findings of this study are intriguing in light of the modest amount of time that professionals spent with parents.

Early Social Interaction (ESI) was designed to extend the recommendations of the NRC (2001) to toddlers with ASD using a parent-implemented intervention embedding naturalistic teaching strategies in everyday routines compatible with IDEA, Part C. Wetherby and Woods (2006) reported on a pre–posttest quasi-experimental study as a preliminary effort to evaluate the effects of ESI on social communication outcomes in a group of 17 children with ASD who entered ESI in the second year of life.

outcomes in a group of 17 children with ASD who entered ESI in the second year of life. Parents were taught naturalistic teaching strategies in two weekly sessions in natural environments over the course of a year. Intervention goals were individualized and selected from a developmental framework targeting social interaction, joint attention, communication, imitation, play, and emotional regulation (Prizant et al., 2000). Results indicated significant improvement, with large effect sizes in 11

(Prizant et al., 2000). Results indicated significant improvement, with large effect sizes in 11 of 13 social communication outcomes measured with the CSBS (Wetherby & Prizant, 2002). It is particularly noteworthy that significant changes were demonstrated in initiating and responding to joint attention, because few studies have demonstrated significant changes on these measures. In an effort to strengthen this design, the ESI group was compared with a no-treatment contrast group of 18 children

this design, the ESI group was compared with a no-treatment contrast group of 18 children with ASD who entered early intervention during the third year of life. Social communication measures were collected from the contrast group at the same age as the ESI group at posttest and compared to those of the ESI group. Thus, the contrast group provides some information about the possible effects of maturation without treatment. However, pretest measures are not available for the contrast group,

maturation without treatment. However, pretest measures are not available for the contrast group, because these children were not identified at a younger age, and therefore it cannot be determined whether the groups were comparable at pretest. The contrast group was comparable to the ESI postintervention group on communicative means and play but had significantly poorer performance, with moderate to large effect size on all other measures of social communication. At a mean age of 31 months, 77%

to large effect size on all other measures of social communication. At a mean age of 31 months, 77% of the children in the ESI group were using words, as compared with 56% of those in the contrast group. A weakness of the study was that it was not possible to determine that the groups were matched in the second year of life because children in the contrast group had not been identified and tested at a younger age. These findings offer promise for the use of parent-implemented intervention to

at a younger age. These findings offer promise for the use of parent-implemented intervention to impact social communication in toddlers with ASD. Collectively, these quasi-experimental design studies offer preliminary evidence of the feasibility of implementing developmental interventions and demonstrating changes in core social communication deficits with treatment. Several studies document the feasibility of teaching parents responsive interaction strategies in a few hours per week of

the feasibility of teaching parents responsive interaction strategies in a few hours per week of professional time and producing meaningful changes in child social communication outcomes. The magnitude of the pre–posttreatment effects in two studies were moderate to large on core social communication deficits that have not been well documented in previous research. Because of the nature of the quasi-experimental designs, these studies have inherent weaknesses due to threats to internal

the quasi-experimental designs, these studies have inherent weaknesses due to threats to internal validity, limiting the causal conclusions that can be drawn.

True Experimental Designs There have been a number of randomized-group design studies that have focused on teaching parents to implement naturalistic strategies with their children with ASD. Drew et al. (2002) reported on a pilot randomized control trial (RCT) administered with 12 families of children with ASD. The parent training program focused on teaching parents how to support social communication within joint action routines within everyday activities. The training consisted of home

within joint action routines within everyday activities. The training consisted of home visits by speech–language therapists once every 6 weeks for 3 hours, with telephone support in between, over the course of a year. The parent training group was compared with a group of children receiving only local services and was found to have made slightly more gains on the language measure. In spite of randomization, the nonverbal developmental level of children in the parent training group was

of randomization, the nonverbal developmental level of children in the parent training group was significantly higher than that of children in the local services group, which is a serious internal threat to the validity of this study. A further limitation of this study is that the outcome measure was exclusively via parent reports, using the MacAurthur–Bates Communicative Development Inventory (CDI; Fenson et al., 1993). Although this study had serious methodological flaws, the authors used the

Fenson et al., 1993). Although this study had serious methodological flaws, the authors used the difficulties encountered to make recommendations for planning future well-designed RCTs. In a more successful randomized-group-design study, Aldred, Green, and Adams (2004) implemented a monthly parent training program for 14 preschool children in their treatment group and compared the outcomes with those for 14 children in a community treatment control group. Aldred et al. found significantly lower

for 14 children in a community treatment control group. Aldred et al. found significantly lower scores with a large effect size on the ADOS-G—which indicated that there were fewer autism symptoms in the treatment group—and significantly better outcomes with a large effect size for parental positive synchronous communication and a moderate effect size for rate of child communicative acts. However, they found no significant difference between the two groups in number of episodes in which the

they found no significant difference between the two groups in number of episodes in which the parent and child shared attentional focus. These results suggest that significant gains with moderate to large effect sizes in some aspects of social communication can be achieved by teaching parents how to enhance their children’s communication in a cost-effective treatment, but that gains in joint attention may require a more intensive or different approach to intervention.

McConachie, Randle, Hammal, and LeCouteur (2005) implemented an RCT with 26 parents of children with ASD and 25 control families. The groups were not significantly different in adaptive behavior at the beginning of treatment. The parent training used the More than Words Program (Sussman, 1999), administered in 20 hours of weekly group instruction and three home visits for individual discussion and feedback. Although this program is broadly based on a developmental framework, goals were not

and feedback. Although this program is broadly based on a developmental framework, goals were not individualized on the basis of the children’s developmental profiles. Measures at pretest and posttest 7 months later included child outcomes based on the MacArthur–Bates Communicative Development Inventory (CDI) as a parent-report measure of language, social communication skills based on the ADOS-G, and a set of parent outcome measures of the parent’s use of facilitation strategies, family

ADOS-G, and a set of parent outcome measures of the parent’s use of facilitation strategies, family resources and stress, and adaptation to the child. A significant advantage was found for the parent training group, with moderate effect sizes in the parents’ use of facilitative strategies and the children’s vocabulary size, but no significant group differences were found on the social communication algorithm of the ADOS-G. Two additional RCTs were recently published that compared two treatments

algorithm of the ADOS-G. Two additional RCTs were recently published that compared two treatments for preschool children with ASD. Kasari, Freeman, and Paparella (2006) randomly assigned participants to one of three treatments: 20 to a joint attention treatment, 21 to a symbolic play treatment, and 17 to a no-treatment control. The treatment involved a blend of contemporary behavioral and developmental procedures of responsive and facilitative interactive methods and was implemented 30 minutes

procedures of responsive and facilitative interactive methods and was implemented 30 minutes daily for 5–6 weeks. Both treatment groups showed significant improvement, with large effect sizes in relation to the control group. Children in the joint attention treatment group initiated significantly more showing and responding to joint attention. There were no significant group differences in initiation of joint attention. The play treatment group showed more diversity in symbolic play action

of joint attention. The play treatment group showed more diversity in symbolic play action schemes and higher play levels, both during play assessments with clinicians and in interactions with their mothers. The children were able to generalize learned skills from treatment sessions with clinicians to playing with their caregivers. These findings provide promising data regarding the specificity of treatment effects and show that these children generalized their treatment effects to new contexts

treatment effects and show that these children generalized their treatment effects to new contexts and people.

Yoder & Stone (2006) conducted an RCT to compare the efficacy of two communication interventions: (1) Responsive Education and Prelinguistic Milieu Teaching (RPMT) and the Picture Exchange Communication System (PECS; Bondy & Frost, 1994). There is a large empirical base supporting the efficacy of RPMT with children with DD; however, this was the first study to examine its effect on turn-taking skills of children with ASD. RPMT uses procedures similar to those of EMT, with a focus on

skills of children with ASD. RPMT uses procedures similar to those of EMT, with a focus on prelinguistic skills combined with an education program for parents on responsive interaction, because previous research demonstrated that maternal responsivity was a treatment mediator (Yoder & Warren, 1999, 2002). RPMT is a developmental intervention that incorporates naturalistic behavioral teaching strategies. PECS is a contemporary behavioral treatment program that teaches requesting and commenting

PECS is a contemporary behavioral treatment program that teaches requesting and commenting behaviors through the exchange of pictures, using natural reinforcers and building to picture–symbol combinations. Both treatments were implemented by clinicians three times a week in 20-minute sessions for 6 months. The results indicated that RPMT was significantly more effective than the PECS, with large effect sizes in facilitating turn taking and generalized initiation of joint attention; however, the

sizes in facilitating turn taking and generalized initiation of joint attention; however, the latter finding was limited to children with at least some initiating joint attention at pretest. The PECS was more effective than RPMT in teaching generalized requests in children with little initiating joint attention prior to treatment. These findings are very intriguing because they offer evidence about the characteristics of children who responded differentially to two different communication

about the characteristics of children who responded differentially to two different communication interventions that required 1 hour of professional time per week for 6 months. Collectively, the cumulative findings from these RCTs offer empirical evidence of the benefit of developmental interventions for children with ASD. Both the parent training and clinician-implemented programs were particularly impressive in that they entailed minimum professional time, and thus are feasible within the

impressive in that they entailed minimum professional time, and thus are feasible within the Part C service delivery system. Improvements in social communication outcomes were demonstrated in programs that were of low intensity and relatively short duration. Furthermore, group differences between treatment and control groups, with moderate to large effect sizes in social communication outcomes, were reported in four RCTs. Finally, these RCTs provide evidence that developmental interventions can

reported in four RCTs. Finally, these RCTs provide evidence that developmental interventions can lead to changes in the core deficits of joint attention and symbolic capacity in young children with ASD and suggest that they may be more effective than behavioral approaches for targeting these social communication goals. However, it is important to note that the children in all of these studies were also receiving community interventions, and therefore these intervention outcomes may reflect the

also receiving community interventions, and therefore these intervention outcomes may reflect the combined effects of the targeted treatments and community interventions. It is not ethical to withhold treatment and therefore not possible to have a true no-treatment control group. To strengthen the causal conclusions that can be drawn from RCTs using interventions that are brief or of low intensity, future research should provide careful documentation of community interventions that families

future research should provide careful documentation of community interventions that families receive prior to and during treatment to document that groups are equivalent on this variable. Comparative treatment designs examining specific responses to treatment, as implemented by Kasari et al. (2006) and Yoder and Stone (2006), and that demonstrate group equivalence in community interventions, are well suited to document the effectiveness of developmental interventions.

CONCLUSIONS AND FUTURE DIRECTIONS This chapter began by summarizing the core social communication deficits in infants and toddlers with ASD and underscoring the critical importance of early intervention to promote social communication skills and hence possibly prevent further abnormal brain development. A common key feature of developmental interventions is the use of naturalistic teaching strategies that follow the child’s lead by means of responsive interaction. Teaching caregivers

strategies that follow the child’s lead by means of responsive interaction. Teaching caregivers responsive interaction strategies may play a critical role in enhancing caregiver synchronization. Caregiver synchronization may, in turn, be a critical mediating variable impacting a child’s social communication outcomes. There is now a body of research supporting the effectiveness of developmental interventions, and particularly noteworthy is that significant improvements have been documented in

interventions, and particularly noteworthy is that significant improvements have been documented in core social communication deficits, such as initiating and responding to joint attention. Joint attention appears to be a pivotal skill that, through a transactional process, has a cascading effect on later developmental outcomes (Wetherby et al., 2007). Further research is needed to systematically explore the mechanisms of change that occur with developmental interventions, particularly the

explore the mechanisms of change that occur with developmental interventions, particularly the impact of adult synchronization on child social communication outcomes. Providing early intervention to infants and toddlers at risk for ASD and their families offers new challenges and promising opportunities for improving the children’s outcomes. The challenges for professionals range from how to identify young children early and accurately, how to identify factors that determine amenability to

identify young children early and accurately, how to identify factors that determine amenability to treatment (to match strategy with the individual child), how to ensure that identified children receive intervention with sufficient intensity to maximize outcomes, to how to develop systems that ensure that services are coordinated with effective communication between professionals and families. Although the optimal intensity of intervention for infants and toddlers is yet undetermined, the

Although the optimal intensity of intervention for infants and toddlers is yet undetermined, the family’s unique role in the care and education of very young children must be recognized. There is little evidence to support the idea that once or twice weekly specialized therapy (e.g., speech–language therapy [SLP]; occupational therapy [OT]) will have an impact on child outcomes without responsive interactions by caregivers in the child’s natural environment.

The research reviewed in this chapter highlights the effectiveness of parent-implemented developmental intervention for very young children with ASD. Working with family members in parent-implemented interventions will necessitate the “rethinking” of prevalent service delivery models and an increased emphasis on service provision in the child’s and family’s natural environment (Guralnick, 2001). The reality of designing and implementing embedded intervention within the child’s routines and

The reality of designing and implementing embedded intervention within the child’s routines and activities where they occur is not a common practice. It is not likely to be an easy shift for service providers to make without changes in program policies (e.g., reimbursement for parent training and travel) and practices (e.g., consultation with caregivers instead of direct “hands on” therapy). Personnel may need additional training in techniques for scaffolding with adults to make

therapy). Personnel may need additional training in techniques for scaffolding with adults to make parent-implemented interventions maximally effective (Guralnick, 2000). Furthermore, there is much to learn about working collaboratively and effectively with families of low socioeconomic status, of diverse cultures, or with linguistic differences (Bernheimer & Keogh, 1995). Agencies supporting service delivery, including Part C early intervention programs, will need to expand service options and

delivery, including Part C early intervention programs, will need to expand service options and opportunities for children and families. The determination of the intensity of services must not be based on the ability of the family to either access or afford them for a child. Early identification should be emphasized, with intervention available for all children according to their needs and the families’ preferences. Again, although such services are costly, the outcomes indicated for children

preferences. Again, although such services are costly, the outcomes indicated for children thus far are likely to result in savings in service delivery later and, more important, in increased potential for the children’s success. Developmental and contemporary behavioral intervention approaches have many common features, and developmental and behavioral features are often blended. Further intervention research is needed to study the relationship between child characteristics, specific treatment

research is needed to study the relationship between child characteristics, specific treatment procedures, and specific outcomes. Future research should strive to document the relations between child characteristics, meaningful changes in core social communication deficits—skills that contribute to the capacity for joint attention and symbol use—and specific intervention strategies. Such research findings can help families and educators to prioritize intervention goals and select specific

findings can help families and educators to prioritize intervention goals and select specific intervention strategies designed to best meet the goals targeted for children likely to be good responders. Interventions within the natural environment will need further delineation of “match” between strategies used by professionals and those that are comfortable and meaningful to the family members implementing them. The list of future needs extends from increased public awareness of early red flags

them. The list of future needs extends from increased public awareness of early red flags of ASD in young children to improved personnel training across the wide range of medical, educational, and social service personnel important to the child and family. It includes the need for the development of proactive approaches for identification of and intervention with young children and their families toward functional and meaningful outcomes and for careful evaluation of the services provided.

toward functional and meaningful outcomes and for careful evaluation of the services provided. Future needs will require a two-pronged approach—bridging the gap between existing knowledge and common practice for young children with ASD, and the pursuit of new knowledge to advance early identification and intervention efforts. As we are better able to identify children with ASD earlier and intervene earlier, early intervention may be viewed as a transactional process to prevent or minimize the

earlier, early intervention may be viewed as a transactional process to prevent or minimize the unfolding of autism symptoms.

Autism spectrum disorders (ASD) continue to be diagnosed at epidemic rates (Centers for Disease Control and Prevention, 2006). The literature suggests that the education of early health care providers coupled with the screening and diagnostic ability to identify children with ASD at very young ages (Baron-Cohen, Allen, & Gillberg, 1992; R. L. Koegel & Koegel, 2006; Lord & Risi, 2000) can lead to commencement of intervention at significantly younger ages. Consequently, this has created a new

to commencement of intervention at significantly younger ages. Consequently, this has created a new challenge for researchers and practitioners (Boulware, Schwartz, Sandall, & McBride, 2006). That is, how should infants and toddlers with ASD be supported in intervention, given their very young age and developmental needs? The need for evidence-based interventions for toddlers is critical, particularly in light of research showing that many childhood psychotherapies are no more effective than

in light of research showing that many childhood psychotherapies are no more effective than the passage of time (as discussed in Kazdin & Weisz, 2003). Furthermore, there is increasing empirical evidence suggesting that early intervention results in a much improved prognosis for children with ASD (Rogers, 1998). Despite this ability to detect ASD at a young age (Baron-Cohen et al., 1992; Lord & Risi, 2000), and the fact that the majority of parents report that symptom onset occurs before the

Risi, 2000), and the fact that the majority of parents report that symptom onset occurs before the age of 2 (Baghadadli, Picot, Pascal, Pry, & Aussilloux, 2003), ASD is not often diagnosed until 2–3 years after parents begin to report symptoms (Filipek et al., 1999). There are several likely causes for the delays in the diagnosis of ASD and commencement of intervention. First, many parents first report their children’s symptoms to their pediatricians. Developmental screenings are often not

report their children’s symptoms to their pediatricians. Developmental screenings are often not covered by insurance companies, and many pediatricians are not trained to diagnose the symptoms of ASD. Second, there appears to be some regression in about a third of the children diagnosed with ASD (Chawarska, Paul, et al., 2007). That is, the parents report that their children were developing typically, but then lost previously acquired skills (e.g., words, social skills, and so on). Third,

typically, but then lost previously acquired skills (e.g., words, social skills, and so on). Third, because there is so much heterogeneity in children with ASD, children diagnosed with milder forms of the disorder may not be easily identified before the age of 3. Fourth, because some early milestones may be met on time, such as gross motor skills, parents may not realize the extent of delay in other areas. Fifth, a subset of children with ASD may not show symptoms in the first year of life

other areas. Fifth, a subset of children with ASD may not show symptoms in the first year of life (Chawarska, Paul, et al., 2007). For example, many parents report that delays in the onset of expressive verbal communication first alerted them to the possibility of a disability. Because first words usually do not appear until the second year of life, many prelinguistic symptoms of ASD may be missed. And finally, many families may not have access to specialists in the area of autism and,

be missed. And finally, many families may not have access to specialists in the area of autism and, consequently, their child’s disability may be un- or misdiagnosed. In spite of the fact that most children are not diagnosed with ASD during the first few years of life, the literature suggests that there are a number of prelinguistic symptoms in children with ASD that are present during or close to the child’s first year of life (Adrien et al., 1993; Chawarska, Paul, et al., 2007; Chawarska,

to the child’s first year of life (Adrien et al., 1993; Chawarska, Paul, et al., 2007; Chawarska, Klin, Paul, & Volkmar, 2007; see also Volkmar, Chawarska, & Klin, Chapter 1; Bishop, Luyster, Richler, & Lord, Chapter 2; Chawarska & Bearss, Chapter 3; and Paul, Chapter 4, this volume). These prelinguistic symptoms, which suggest directions for treatment, include more neutral affect, less joint attention, fewer social interactions, limited response to the child’s name being called, poor eye

attention, fewer social interactions, limited response to the child’s name being called, poor eye contact, lack of pointing, delays in play, and repetitive behaviors (cf. Adrien et al., 1993; Chawarska, Paul, et al., 2007). As a whole, this literature suggests that in the future the age of diagnosis of ASD may well be in the child’s first year of life. With a focus on, and efforts toward, early diagnosis (Osterling, Dawson, & Munson, 2002), there inherently is a pervasive need for empirical

diagnosis (Osterling, Dawson, & Munson, 2002), there inherently is a pervasive need for empirical evaluation of effective interventions specifically designed for infants and toddlers (Boulware et al., 2006; Volkmar, Chawarska, & Klin, 2005; Wetherby & Woods, 2006). This gap in the literature continues for a number of reasons that are discussed later; however, a primary reason is that prior to this last decade “early intervention” in the treatment of ASD primarily consisted of intervention with

last decade “early intervention” in the treatment of ASD primarily consisted of intervention with children 3 years of age or older (Wetherby & Woods, 2006). Thus, the bulk of the published studies relating to intervention for young children with ASD include preschool and school-age participants (cf. Levy, Kim, & Olive, 2006). Although few intervention studies have been published for toddlers, the variables that have produced the most positive outcomes for older children with ASD are most

the variables that have produced the most positive outcomes for older children with ASD are most certainly relevant to toddlers with ASD and those at risk for this diagnosis. These include parent involvement, intensive behavioral intervention (i.e., applied behavior analysis), focus on language remediation, inclusion in the natural environment with typically developing children, long-term intervention, and multicomponent interventions (i.e., focus on language, social-emotional, cognition, and

and multicomponent interventions (i.e., focus on language, social-emotional, cognition, and behavior; Levy et al., 2006). Within this general framework, there has been a search for interventions that can produce generalized improvements and target core or pivotal areas that may affect many broad areas of functioning. Hence, the goal is to hasten the habilitation process with more effective interventions beginning at an earlier age. This chapter attempts to synthesize the current knowledge of

beginning at an earlier age. This chapter attempts to synthesize the current knowledge of behavioral interventions for ASD and the application of these approaches to the growing number of toddlers being diagnosed. Furthermore, this chapter also presents considerations unique to this very young population of children and suggestions for treatment delivery. Finally, the chapter concludes with a conceptualization of the next steps for supporting these very young children.

CONSIDERATIONS IN THE TREATMENT OF TODDLERS WITH ASD Throughout the last decade, there has been a growing call in the literature for developing standards and guidelines for the treatment of infants and toddlers with ASD (Volkmar et al., 2005; Wetherby & Woods, 2006). Although behavioral interventions have been widely effective in the treatment of symptoms in older children (Levy et al., 2006), research is currently needed to identify any necessary changes in these procedures for

al., 2006), research is currently needed to identify any necessary changes in these procedures for developmentally appropriate use with toddlers. For instance, researchers may need to consider developmental issues, such as teaching important prelinguistic skills (e.g., joint attention) and adapting behavioral protocols to take appropriate developmental processes and milestones into account (e.g., parent–toddler attachment), as well as other practical considerations (e.g., toilet training, sleep

parent–toddler attachment), as well as other practical considerations (e.g., toilet training, sleep schedules). Further reflection on typical toddler development may prove to be especially helpful. That is, the first couple years of life are marked by remarkable development, such as the emergence of intentional communication, which usually appears by 9 months of age in the form of joint attention skills and is completely in place by 18 months (Bates, 1976; Bates, Camaioni, & Volterra, 1975;

skills and is completely in place by 18 months (Bates, 1976; Bates, Camaioni, & Volterra, 1975; Prizant & Wetherby, 1987). At this point in time, toddlers begin to comprehend that their behavior produces desired changes in their environment. However, the absence of these early social communication skills in toddlers with ASD (Osterling et al., 2002) may contribute to a failure to learn the response–reinforcer contingency. This, in turn, may lead to a state of learned helplessness, as suggested

contingency. This, in turn, may lead to a state of learned helplessness, as suggested by cognitive-behavioral research (R. L. Koegel & Egel, 1979; R. L. Koegel, O’Dell, & Dunlap, 1988). This suggests that intervention for toddlers with ASD may require specific, frequent, and clear exposure to the response–reinforcer contingency in order to prevent the maladaptive behavior patterns associated with learned helplessness (Seligman, Maier, & Geer, 1968; R. L. Koegel, Opdenden, Fredeen, & Koegel,

learned helplessness (Seligman, Maier, & Geer, 1968; R. L. Koegel, Opdenden, Fredeen, & Koegel, 2006). These and other issues related to the distinctive needs of toddlers with ASD are discussed throughout the rest of this chapter, particularly in the following section on behavioral approaches to early intervention in ASD.

BEHAVIORAL MODELS OF EARLY INTERVENTION A variety of approaches have been attempted for the treatment of ASD, including physiological and nonphysiological (e.g., behavioral) approaches. Within nonphysiological approaches, the methods with the strongest empirical support are behavioral models based on operant conditioning theory, such as those used in applied behavior analysis (cf. Schreibman, 2000). Empirical validation is critical, as many ineffective interventions have caused great pain to

Empirical validation is critical, as many ineffective interventions have caused great pain to families and either delayed the implementation of, or replaced altogether, important empirically based interventions. Prior to presenting and discussing the various models of applied behavior analysis (ABA) that have empirical evidence for supporting the development of children, including toddlers, with ASD, it can be helpful to briefly consider the historical aspects of early intervention that have

ASD, it can be helpful to briefly consider the historical aspects of early intervention that have enabled researchers and practitioners to advance the field to its current day status.

Historical Background Prior to the 1960s most children with ASD were considered “uneducable,” separated from their parents during treatment, and almost always institutionalized by adolescence or before (Rapin, 1991; Weiss, 1999). However, beginning in the early 1960s, scientific studies using behavioral interventions focusing on observable and quantifiable measurement began appearing in the literature (e.g., Ferster & DeMyer, 1961, 1962; Lovaas et al., 1966). These early studies primarily

literature (e.g., Ferster & DeMyer, 1961, 1962; Lovaas et al., 1966). These early studies primarily involved older children (e.g., age 5 and older) because it was rare to identify children with ASD much younger than school age. This initial research was necessary in order to prove to both the scientific and lay communities once and for all that children with ASD were indeed “educable,” laying the foundation for future researchers to one day be able to reach toddlers (Wetherby & Woods, 2006). In

foundation for future researchers to one day be able to reach toddlers (Wetherby & Woods, 2006). In addition to primarily working with older children, these early studies focused on procedures for reducing problem behaviors, usually through punishment and increasing positive behaviors by using rewards (Hewitt, 1965; Lovaas, 1977). Frequently, initial intervention steps focused on gross motor imitation and attempts to teach verbal communication to children with ASD through imitation of sounds

and attempts to teach verbal communication to children with ASD through imitation of sounds and words, while rewarding closer approximations to the adult word through a strict operant shaping procedure. Correct responses were rewarded with extrinsic reinforcers, such as edibles paired with social praise. Overall, the underlying assumption and hope of these operant conditioning techniques was that once children were able to attend to and imitate others, they might be likely to demonstrate more

once children were able to attend to and imitate others, they might be likely to demonstrate more global, generalized imitation (Lovaas, 1977). Though generalized imitation was achieved by some children, imitation taught in this way did not appear to reduce core symptom areas of ASD. These early intervention procedures minimized distractions by using highly structured discrete trials in which an adult presented a series of learning tasks and rewarded successive correct responses (i.e.,

an adult presented a series of learning tasks and rewarded successive correct responses (i.e., stimulus–response–consequence) in a one-on-one format. Although the approach was extremely effective, many children had difficulties such as cue dependency, lacked spontaneity and skill to initiate communicative bids and social approaches, engaged in rote responding, failed to generalize treatment gains to other settings, stimuli, and people, and had difficulty with long-term maintenance of their

to other settings, stimuli, and people, and had difficulty with long-term maintenance of their acquired skills (Schreibman, 2000; Horner, Dunlap, & Koegel, 1988).

To address these limitations, research focused on techniques for improving generalization and spontaneity began to emerge in the late 1970s and early 1980s. This next series of studies included procedures aimed at reducing the discriminability of the reinforcement schedules (R. L. Koegel & Rincover, 1974, 1977) by introducing the use of multiple exemplars (Gunter, Fox, Brady, Shores, & Cavanaugh, 1988; Matson, Sevin, Box, Francis, & Sevin, 1993), within-stimulus prompting (Schreibman, 1975),

1988; Matson, Sevin, Box, Francis, & Sevin, 1993), within-stimulus prompting (Schreibman, 1975), parent education (R. L. Koegel, Glahn, & Nieminen, 1978), and teaching responses that were likely to be rewarded outside the clinical setting (Schreibman & Carr, 1978), thereby improving the effectiveness of the intervention. Although these procedures often resulted in desirable behavioral change, they still focused on implementing the intervention in a highly structured context and were not easily

still focused on implementing the intervention in a highly structured context and were not easily incorporated into children’s daily routines. The ongoing issues of generalization, maintenance, spontaneity, and the desire to develop interventions that improved child affect, as well as decreased disruptive, escape, and avoidance behavior, led researchers in the 1980s, and particularly the 1990s, to focus on core areas for improving the motivation and responsivity of children with ASD (R. L.

to focus on core areas for improving the motivation and responsivity of children with ASD (R. L. Koegel & Koegel, 2006). The line of research that emerged during this time not only demonstrated that previous limitations could be ameliorated but also documented collateral improvements in untargeted areas and produced generalized areas of responding (R. L. Koegel, O’Dell, & Koegel, 1987). These areas included improvements in child affect (R. L. Koegel et al., 1988), improvements in socialization

included improvements in child affect (R. L. Koegel et al., 1988), improvements in socialization (Gaylord-Ross, Haring, Breen, & Pitts-Conway, 1984; R. L. Koegel, Dyer, & Bell, 1987; R. L. Koegel & Frea, 1993), improvements in academic learning (Dunlap & Kern, 1993; Dunlap, Kern-Dunlap, Clarke, & Robbins, 1991), improvements in disruptive behaviors (R. L. Koegel, Koegel, & Surratt, 1992), and improvements in stereotypic and restrictive behaviors (Baker, Koegel, & Koegel, 1998). The several

improvements in stereotypic and restrictive behaviors (Baker, Koegel, & Koegel, 1998). The several decades of accumulating research in the area of ASD, as outlined above, suggested the efficacy of behavioral interventions, but some have argued that operant conditioning and discrete trial training may be so controlled that they result in a lack of generalization, are irrelevant outside the experimental setting, or may miss the child in behavioral reductionism (Schopler, 2001). Fortuitously,

setting, or may miss the child in behavioral reductionism (Schopler, 2001). Fortuitously, these and other concerns regarding the effectiveness of various interventions have been addressed by a Task Force on Promotion and Dissemination of Psychological Procedures of Division 12 of the American Psychological Association (APA; Task Force, 1995) that developed guidelines for empirically supported interventions. These guidelines emphasize interventions that have been demonstrated to be both

interventions. These guidelines emphasize interventions that have been demonstrated to be both efficacious (producing empirically documented change in target behavior) and effective (changes are demonstrated to be relevant to clinical populations in the natural environment; Chorpita, 2003). Simultaneously, behavioral researchers have stressed the importance of constructs such as social validation of intervention outcomes (so that changes are evidenced by the greater community; Geller, 1991;

of intervention outcomes (so that changes are evidenced by the greater community; Geller, 1991; Hayes, Barlow, & Nelson-Gray, 1999; Kazdin, 1977; Schwartz & Baer, 1991; Wolf, 1978), goodness of fit with areas such as family and cultural values, individualization, and daily routines (Albin, Lucyshyn, Horner, & Flannery, 1996), stakeholder quality of life (Risley, 1996), and, in general, making meaningful differences in the lives of children and families (Carr et al., 2002; Strain & Schwartz,

meaningful differences in the lives of children and families (Carr et al., 2002; Strain & Schwartz, 2001). The following section discusses selected current evidence-based models and approaches.

Current Models This section provides an overview of a number of empirically validated behavioral models and their applicability to toddlers with ASD, with a heavy emphasis on naturalistic behavioral approaches. The focus on naturalistic approaches is used in part to address the unique developmental needs of toddlers. That is, as reviewed in detail later, best practices for young children with ASD include such components as delivering interventions that can be incorporated into the daily family

include such components as delivering interventions that can be incorporated into the daily family routine and resemble typical patterns of parent–child interactions (National Research Council, 2001; Wetherby & Woods, 2006). Given that naturalistic behavioral models inherently focus on embedding teaching opportunities throughout meaningful daily activities and routines, it seems appropriate to focus on this particular approach when addressing the needs of toddlers. Nonetheless, before

to focus on this particular approach when addressing the needs of toddlers. Nonetheless, before considering the specifics of each behavioral approach, it may be helpful to note the broader implications of interventions for young children with ASD. Specifically, in 2001, the National Research Council (NRC) performed a thorough review of the existing literature on ASD and concluded that there was significant evidence for educational interventions and that a considerable proportion of children

significant evidence for educational interventions and that a considerable proportion of children with ASD respond to such interventions. Although the NRC reviewed a variety of teaching techniques for treating ASD, it identified a number of variables shared by these different approaches that seemed to constitute best practice. These include (1) entry into early intervention as soon as ASD is suspected; (2) intensive instruction for at least 5 hours per day, 5 days per week; (3) teaching

is suspected; (2) intensive instruction for at least 5 hours per day, 5 days per week; (3) teaching opportunities that are delivered over brief periods of time and are repeated systematically; (4) ample individualized adult attention on a daily basis; (5) a family component, including parent education; (6) ongoing assessment and program evaluation, along with necessary programmatic adjustments; and (7) instructional priority in (a) functional and spontaneous communication, (b) social

and (7) instructional priority in (a) functional and spontaneous communication, (b) social instruction delivered in a variety of settings, (c) play skills focused on peer interactions, (d) skill acquisition, maintenance, and generalization in natural settings, (e) functional assessment and positive behavioral support to address disruptive behaviors, and (f), if appropriate, functional academic skills (National Research Council, 2001; Wetherby & Woods, 2006). The current models discussed below

(National Research Council, 2001; Wetherby & Woods, 2006). The current models discussed below are those identified by the NRC as empirically validated approaches and are all based on the principles of ABA. Given that these approaches have been used most often with preschool and school-age children, their relevance to toddlers is specifically discussed.

Early Intensive Behavior Intervention Shea (2005) stated that the term early intensive behavior intervention (EIBI) has been used for a variety of techniques described in the literature, including the Lovaas method, discrete trial training, operant learning, and applied behavior analysis. However, the author quickly notes that the terms are not necessarily interchangeable and suggests that for further information about them that readers refer to Lovaas (2002), McClannahan and Krantz (2001),

further information about them that readers refer to Lovaas (2002), McClannahan and Krantz (2001), and Smith (2001). Nonetheless, for the purpose of this chapter EIBI is discussed in the context of more traditional behavioral approaches versus the naturalistic behavioral approaches that are detailed below. In spite of some specific definitional differences, the techniques of EIBI programming in general share a variety of common elements (Weiss, 1999; Shea 2005). These include intensive

in general share a variety of common elements (Weiss, 1999; Shea 2005). These include intensive one-on-one instruction for approximately 30–40 hours for at least 2 consecutive years (Green, 1996), initial interventions focusing on areas of severe deficits (e.g., imitation, matching, receptive language skills, expressive language skills, including early verbal imitation; see, e.g., Handleman & Harris, 2001), highly structured instructional settings (e.g., therapy room), and an overall use of

Harris, 2001), highly structured instructional settings (e.g., therapy room), and an overall use of discrete trial instruction with designated periods for incidental teaching (e.g., downtime; Anderson, Taras, & O’Malley Cannon, 1996). Research utilizing EIBI has documented compelling gains for children with ASD (Lovaas, 1987; Anderson, Avery, DiPierto, Edward, & Christian, 1987; Fenske, Zalenski, Krantz, & McClannahan, 1985); however, this approach and its reported results have not been without

Krantz, & McClannahan, 1985); however, this approach and its reported results have not been without debate and controversy (Gresham & MacMillan, 1998; Mesibov, 1993; Shea, 2005). Boyd and Corley (2001) commented that most of the criticism of EIBI has been about methodological shortcomings, whereas Shea (2005) suggested that the most debated issue is related to the frequently cited expectation that 47% of children with ASD who receive services via this approach will become indistinguishable from

47% of children with ASD who receive services via this approach will become indistinguishable from typically developing peers. Unfortunately, the scope of this chapter does not allow a comprehensive discussion of these issues (for more in-depth analyses, see Green, 1996, and Shea, 2005); however, we briefly discuss EIBI in relation to the treatment of toddlers with ASD. That is, original EIBI research was conducted with older preschool-age children (e.g., 4 years old and older; Lovaas, 1987;

was conducted with older preschool-age children (e.g., 4 years old and older; Lovaas, 1987; McEachin, Smith, & Lovaas, 1993). More recently, research on EIBI with toddlers has been emerging in the literature, with reports of gains in imitation skills and receptive and expressive language skills (Boyd & Corley, 2001; Weiss, 1999; Smith, 2001). Although each of these studies indicated benefits and included a few children of 24 months or younger as participants, the mean age of their participants

included a few children of 24 months or younger as participants, the mean age of their participants was 4 years. Consequently, future research on the implementation of EIBI with toddlers is necessary in order to further clarify its applicability with this population.

Naturalistic Behavioral Interventions The historical difficulties encountered by discrete trial approaches in achieving widespread and long-lasting gains in socially significant skills have led developers of many of the more recent behavioral approaches to develop methodologies that focus on generalization (R. L. Koegel & Koegel, 2006). These more recent techniques have been highly effective in improving communication and emphasizing the reciprocal interactive nature of the communicative

in improving communication and emphasizing the reciprocal interactive nature of the communicative interaction and accentuating the child’s role as an active participant. Because of the historical difficulties in early identification of ASD, much of the published empirical research has focused on older children (preschool- and elementary school-age). Current research is heavily emphasizing early intervention for toddlers, and emerging data are suggesting important variables for further study (R.

for toddlers, and emerging data are suggesting important variables for further study (R. L. Koegel & Schreibman, 2006). Although ongoing research is beginning to address the toddler population more specifically, there remains a need for empirical support of the types of changes needed when such interventions are applied to this population. Several empirically validated methodologies have emerged that are similar in targeting core areas of ASD. Three researched methodology packages that are very

are similar in targeting core areas of ASD. Three researched methodology packages that are very similar are incidental teaching (Hart & Risley, 1968), milieu teaching (Halle, Baer, & Spradlin, 1981; Hancock & Kaiser, 2002; Hart & Risley, 1975; Warren, McQuarter, & Rogers-Warren, 1984), and pivotal response teaching, originally published as the Natural Language Paradigm (R. L. Koegel, O’Dell, et al., 1987). All have several common characteristics, which include child choice or following the

et al., 1987). All have several common characteristics, which include child choice or following the child’s lead, intervention in natural contexts, and the use of intrinsically related rewards. These areas are especially relevant to toddlers with ASD, as they are similar to parent–child interactions of typically developing children, hence these methods have been termed “naturalistic” approaches. That is, the less structured, more child-focused approaches in the child’s natural settings not only

is, the less structured, more child-focused approaches in the child’s natural settings not only result in faster learning, but also in less disruptive behavior (R. L. Koegel, O’Dell, et al., 1987; R. L. Koegel et al., 1992). It should also be noted that some of these components and similar strategies are also evident in other interventions, such as the Social Communication, Emotional Regulation, Transaction Supports (SCERTS) model (Prizant, Wetherby, Rubin, Laurent, & Rydell, 2006), and

Transaction Supports (SCERTS) model (Prizant, Wetherby, Rubin, Laurent, & Rydell, 2006), and in-context teaching (Camarata & Nelson, 1992).

Some of these naturalistic interventions have been effective with toddlers with ASD. For example, Wetherby & Woods (2006) investigated the impact of their Early Social Interaction (ESI) project on the social-communication outcomes for a group of parent–toddler dyads (i.e., toddler ages were younger than 24 months). ESI consists of the following components: (1) routines-based intervention in natural environments, (2) individualized curriculum, and (3) parent-implemented intervention.

in natural environments, (2) individualized curriculum, and (3) parent-implemented intervention. Parent–toddler dyads participated in ESI for at least 12 months and agreed to a diagnostic evaluation again when the child was 36 months of age. Results indicated that the toddlers who participated in ESI showed dramatic improvements on 11 of 13 social-communication goals (e.g., gaze shifts, shared positive affect, rates of communicating), an overall far better outcome than for toddlers who had

positive affect, rates of communicating), an overall far better outcome than for toddlers who had participated in a contrast group. Furthermore, at postintervention, 76.5% of the toddlers who participated in ESI were verbal (5.9% were verbal at preintervention), in comparison to only 55.6% of the toddlers who were in the contrast group. These findings are similar to data obtained by Boulware et al. (2006) in their analysis of Project DATA (Developmentally Appropriate Treatment for Autism) for

al. (2006) in their analysis of Project DATA (Developmentally Appropriate Treatment for Autism) for toddlers. Project DATA consisted of parent–toddler dyads and the five following components: (1) services in inclusive environments, (2) family-centered services, (3) practices guided through transdisciplinary teaming, (4) empirical and value-driven interventions, and (5) programs that included developmentally appropriate practices. Children who participated in Project DATA received a minimum of

appropriate practices. Children who participated in Project DATA received a minimum of 16 hours of intervention in a variety of arrangements (e.g., integrated play groups, individualized instruction, and in-home support). All eight toddlers studied received services for a minimum of 9 months. Results demonstrated that all eight children made gains on standardized measurements (e.g., Bayley Scales of Infant Development—Second Edition, BSID-II; Temperament and Atypical Behavior Scales;

Scales of Infant Development—Second Edition, BSID-II; Temperament and Atypical Behavior Scales; Communication and Symbolic Behavior Scales, CSBS) and/or on functional measures (e.g., gains in expressive language). These studies provide evidence for successful naturalistic behavioral interventions specifically designed for toddlers with ASD. As discussed above, the empirical research conducted throughout the 1960s and 1970s not only demonstrated that children with ASD were indeed “educable” but

the 1960s and 1970s not only demonstrated that children with ASD were indeed “educable” but created the building blocks necessary for steering the intervention field into the direction of naturalistic methodologies aimed at addressing issues such as generalization, maintenance, and spontaneity (L. K. Koegel, 1995; Schreibman, 1988). Moreover, the naturalistic intervention approaches that developed from earlier methodologies focused research on factors that would lead to increased motivation,

from earlier methodologies focused research on factors that would lead to increased motivation, responsivity, parent education, and inclusion (L. K. Koegel, 1995). The following section discusses in detail three such naturalistic early intervention approaches: incidental teaching, milieu teaching, and pivotal response teaching.

INCIDENTAL TEACHING Incidental teaching has a rich history of research in staff training, environmental arrangements, peer training, activity choices, and parent education (Doke & Risley, 1972; Hart & Risley, 1968; McClannahan, Krantz, & McGee, 1982; McGee, Almeida, Sulzer-Azaroff, & Feldman, 1992; McGee, Krantz, Mason, & McClannahan, 1983, 1986; Risley & Favell, 1979; Twardosz, Cataldo, & Risley, 1974). Incidental teaching consists of a systematic protocol of instruction that is delivered in

1974). Incidental teaching consists of a systematic protocol of instruction that is delivered in the natural environment (i.e., everyday family and child activities, routines, tasks). Moreover, incidental teaching requires that the environment be arranged so that it attracts the child’s attention to desired toys, activities, and objects. The typical protocol of incidental teaching consists of child initiations, followed by instructor elaboration, and then natural reinforcement. In general,

child initiations, followed by instructor elaboration, and then natural reinforcement. In general, children initiate incidental teaching episodes by gesturing (e.g., reaching, pointing) or verbally requesting a desired object or activity. In response, the instructor (e.g., teacher, parent) prompts for an elaboration of the child’s initiation and then follows the elaborated response with contingent access to the natural reinforcer (e.g., desired toy). As McGee, Morrier, and Daly (1999) discuss,

access to the natural reinforcer (e.g., desired toy). As McGee, Morrier, and Daly (1999) discuss, incidental teaching offers the advantageous combination of applied behavior analysis with the benefit of delivering intervention in typical, everyday childhood routines and activities. For more specific details of incidental teaching, see McGee et al. (1999). During the last couple of decades, much of the research in incidental teaching has been conducted at the Walden Early Childhood Programs, a

of the research in incidental teaching has been conducted at the Walden Early Childhood Programs, a division of the Emory Autism Resource Center at Emory University School of Medicine. One branch of the Walden Programs focused on very young children with ASD is the Walden Toddler Program. The Walden Toddler Model started in 1993 as a model demonstration grant from the U.S. Department of Education (Office of Special Education Programs) and consists of two components: a center-based program and a

(Office of Special Education Programs) and consists of two components: a center-based program and a home-based program (McGee et al., 1999). The center-based component is an inclusive program that focuses on the developmental needs of children with ASD and typically developing peers. The home-based component focuses on parent education and the establishment of parent–professional collaboration. Between the center-based and home-based components, the Walden Toddler Program provides more than 30

the center-based and home-based components, the Walden Toddler Program provides more than 30 hours per week of planned early intervention. McGee et al. (1999) highlight six hallmarks of the Walden Toddler Model: early is essential, more is better, family involvement is critical, social development requires early inclusion, early childhood should be fun, and incidental teaching should be planned. The results obtained by the Walden Toddler Program are nothing short of impressive. Specifically,

The results obtained by the Walden Toddler Program are nothing short of impressive. Specifically, 36% of toddlers (average age: 2.5 years) entered the Walden Toddler Program with elementary expressive language skills, although much of their language consisted of echolalia or perseverative speech. However, 82% of toddlers (average age: 3.5 years) exited the program with meaningful expressive verbalizations. In other words, the vast majority of the toddlers who participated in the Walden Toddler

In other words, the vast majority of the toddlers who participated in the Walden Toddler Program were subsequently able to start preschool with functional expressive language, a great contrast to reports that 50% of children with ASD never develop any form of spoken language (Lord & Paul, 1997). These results were so groundbreaking that the NRC highlighted them in its report on characteristics of effective interventions, noting that the extraordinary treatment outcomes were likely related to

of effective interventions, noting that the extraordinary treatment outcomes were likely related to the children’s young age at treatment entry (National Research Council, 2001).

More recently, Stahmer and Ingersoll (2004) reported similar results when they replicated the Walden Toddler Program. In particular, these authors used a quasi-experimental design to assess the effects of an inclusive program for toddlers with ASD (under 3 years of age). This replication of the Walden Toddler Program contributed to the present literature by reporting results for both standardized assessments and functional outcomes, which were consistent with those obtained by McGee et al.

assessments and functional outcomes, which were consistent with those obtained by McGee et al. (1999). In particular, Stahmer and Ingersoll (2004) reported that 50% of the participating toddlers exhibited no functional expressive language at entry, but by the time they exited the Children’s Toddler Program, 90% used a functional communication system (i.e., expressive language or augmentative language). Moreover, all of the toddlers demonstrated qualitative gains in their functional social and

Moreover, all of the toddlers demonstrated qualitative gains in their functional social and play behaviors after intervention. Specifically, none of the children engaged in social interaction with peers at entry, whereas at exit 60% engaged in social interaction, 25% could respond to peer initiations, and 35% could engage in reciprocal interactions. In terms of standardized assessments of cognitive skills (measured by scores on the BSID-II), 37% of the participating toddlers were functioning in

skills (measured by scores on the BSID-II), 37% of the participating toddlers were functioning in the typical range at the time they exited the program, in comparison with only 11% at entry. Consistent with the results obtained by McGee and colleagues (1999), Stahmer and Ingersoll (2004) provided additional evidence that inclusion, paired with parent training and 2 hours per week of individualized instruction, may be an effective treatment model for toddlers, potentially providing new options

instruction, may be an effective treatment model for toddlers, potentially providing new options for families with very young children with ASD.

MILIEU TEACHING Milieu teaching is a naturalistic teaching approach targeting communication and social skills. Like incidental teaching, it emphasizes teaching in the context of ongoing, everyday activities both at home and in school, following the child’s lead, and providing natural consequences for communication. The primary procedures of milieu teaching are modeling (i.e., demonstrating an action), mand modeling (i.e., demonstrating saying a word with the goal of having the child repeat

action), mand modeling (i.e., demonstrating saying a word with the goal of having the child repeat that word to request something), time delay (i.e., presenting the desired item and allowing a period of time to pass for the child to respond spontaneously before providing any guidance), incidental opportunities, and environmental arrangements. Although incidental teaching also uses environmental arrangements, experts in milieu teaching emphasize this strategy as a defining and central feature of

experts in milieu teaching emphasize this strategy as a defining and central feature of the milieu instructional approach (Kaiser, Ostrosky, & Alpert, 1993). In other words, environmental arrangements (i.e., arranging the environment to create opportunities for the child to engage in communication) are “a critical aspect of implementing milieu teaching” (Halle et al., 1981; Kaiser et al., 1993). Environmental arrangements are important for adults because they increase their awareness of

1993). Environmental arrangements are important for adults because they increase their awareness of opportunities for children to communicate (e.g., instead of having all the pieces to a puzzle on a table, placing some out of reach so the child needs to initiate a request of the adult). Likewise, environmental arrangements are important for children because they provide opportunities and nonverbal cues for initiating language (Kaiser et al., 1993). Examples of environmental arrangements include

cues for initiating language (Kaiser et al., 1993). Examples of environmental arrangements include placing materials of interest within view but out of reach, assistance (i.e., giving the child materials that require assistance in order for them to be used), inadequate portions (e.g., giving small pieces of snacks so that the child is motivated to request more), sabotage (e.g., removing a necessary piece of a toy so the child is motivated to request it), protest (e.g., providing the wrong

piece of a toy so the child is motivated to request it), protest (e.g., providing the wrong object so that the child is motivated to request a different one), and silly situations (e.g., providing an absurd object, such as a shovel, for a child to eat soup in order to motivate the child to request the correct object). For detailed definitions of the milieu teaching procedures, including the above mentioned environmental arrangements, see Kaiser et al. (1993). Although many of the milieu

above mentioned environmental arrangements, see Kaiser et al. (1993). Although many of the milieu teaching techniques have been implemented with preschool and elementary school children, many of the procedures are similar to those of incidental teaching, which has been effective with toddlers. Furthermore, milieu teaching has been shown to improve the social communication skills of children with ASD (Alpert & Kaiser, 1983; Kaiser, Yoder, & Keetz, 1992; Kaiser, Hancock, & Nietfeld, 2000) and to

ASD (Alpert & Kaiser, 1983; Kaiser, Yoder, & Keetz, 1992; Kaiser, Hancock, & Nietfeld, 2000) and to facilitate staff training (e.g., therapists, teachers; Kaiser et al., 1993), improve peer/sibling training (Hancock & Kaiser, 1996; Ostrosky & Kaiser, 1991), and incorporate parent education (Hemmeter & Kaiser, 1990; Kaiser et al., 1999). Studies have also found that children with ASD with some language (e.g., ability to produce 10 words) are likely to have especially positive gains when provided

(e.g., ability to produce 10 words) are likely to have especially positive gains when provided with milieu intervention (Yoder, Kaiser, Alpert, & Fischer, 1993).

A more recent application of milieu teaching is enhanced milieu teaching (EMT; Hancock & Kaiser, 2002; Hemmeter & Kaiser, 1994; Kaiser et al., 2000). Enhanced milieu teaching is a “hybrid approach to naturalistic, early language intervention” that includes components of behavioral and social interaction approaches (i.e., in which each partner’s behavior affects the other’s; Hancock & Kaiser, 2002). The EMT approach focuses on three specific areas: environmental arrangements, responsive

2002). The EMT approach focuses on three specific areas: environmental arrangements, responsive interaction techniques, and teaching procedures used to promote new language use in their functional contexts (Hancock & Kaiser, 2002; Kaiser et al., 2000). EMT is differentiated from incidental teaching and pivotal response teaching (which is discussed below) by having responsive interaction techniques (expansion, turn taking, etc.) as a foundation of the approach, whereby the responsiveness of both

(expansion, turn taking, etc.) as a foundation of the approach, whereby the responsiveness of both the therapist and the child are affected in a transactional manner. The specific components of EMT include expansions (e.g., child utterances that are expanded by an adult), balance of adult and child turns (mix of adult- and child-led situations), following the child’s lead, pausing an appropriate amount of time (i.e., at least 3 seconds) for the child to respond, and responsive feedback (e.g.,

amount of time (i.e., at least 3 seconds) for the child to respond, and responsive feedback (e.g., adult verbalizations that follow child’s utterances). The standard milieu teaching procedures mentioned above (e.g., modeling, mand modeling, time delay) are maintained in EMT. The focus on responsiveness in EMT changes the target from proactive instruction to responsive instruction (i.e., embedding prompting into ongoing conversation and play interactions). Hancock and Kaiser (2002) demonstrated

prompting into ongoing conversation and play interactions). Hancock and Kaiser (2002) demonstrated that preschool children with ASD made gains in social communication skills by participating in EMT sessions with clinicians. Moreover, the participating children also generalized skills to new settings and to interactions with their parents, who had not received any specialized training. The authors discuss how, with a focus on responsive instruction, the flow of interaction between the child and

discuss how, with a focus on responsive instruction, the flow of interaction between the child and adult is less prone or inclined to interruption as in discrete trials, therefore providing many more opportunities for teaching skills. In addition, the authors contend that the responsive engagement strategy utilized by EMT may be particularly helpful for children with ASD, who are frequently resistant to didactic interactions and/or direct instructions. The application of EMT may be especially

to didactic interactions and/or direct instructions. The application of EMT may be especially helpful when targeting toddlers with ASD because of its focus on “responsiveness” to the toddler’s interests and behaviors as the means for directing instruction. As mentioned above, doing so may reduce the potential for avoidance responding, which is so characteristic of children with ASD, and may allow teaching episodes to be “gentler” for young children by motivating them to want to participate,

teaching episodes to be “gentler” for young children by motivating them to want to participate, thereby reducing the need for aversives. The next approach, pivotal response teaching (PRT), has been particularly strong in that area.

PIVOTAL RESPONSE TEACHING Pivotal response teaching (PRT), also called the Natural Language Paradigm when it is focused specifically on language, is a highly efficient evidence-based approach that is founded on the scientific principles of applied behavior analysis (ABA). As noted earlier, its procedures were developed to address several concerns, including children’s lack of generalization, slow rate of progress, poor affect during intervention, and high levels of disruptive behavior during

rate of progress, poor affect during intervention, and high levels of disruptive behavior during intervention (R. L. Koegel, O’Dell, et al., 1987; R. L. Koegel et al., 1992). The studies focused on developing an intervention package that would address core “pivotal areas” that appear to be essential to vast areas of functioning instead of working on individual target behaviors one at a time (L. K. Koegel, Koegel, Shoshan, & McNerney, 1999; L. K. Koegel, Koegel, Harrower, & Carter, 1999). PRT

K. Koegel, Koegel, Shoshan, & McNerney, 1999; L. K. Koegel, Koegel, Harrower, & Carter, 1999). PRT targets key areas central to overall functioning and results in widespread, collateral gains in other untargeted domains (R. L. Koegel, O’Dell et al., 1987). Outcome data from the University of California at Santa Barbara related to specific PRT components, as well as to the overall approach, have led the National Research Council of the National Academy of Sciences (National Research Council,

led the National Research Council of the National Academy of Sciences (National Research Council, 2001) to describe PRT as an extremely effective comprehensive behavioral intervention. The intervention can be implemented in school, home, and community contexts throughout the child’s daily routines and activities in order to foster ongoing opportunities for learning (L. K. Koegel, Koegel, Bruinsma, Brookman, & Fredeen, 2003). Moreover, PRT is intended to be implemented by family members so that

Brookman, & Fredeen, 2003). Moreover, PRT is intended to be implemented by family members so that children with ASD (like typical children) have learning opportunities throughout all their waking hours, as opposed to being instructed only during specific times of the day. PRT has been used extensively with toddlers with ASD, and long-term data suggest that approximately 90% of nonverbal children who begin PRT intervention for communication before the age of 3 are able to learn expressive verbal

begin PRT intervention for communication before the age of 3 are able to learn expressive verbal communication. If intervention begins between 3 and 5 years of age, approximately 80–85% of nonverbal children learn to use expressive verbal communication. If intervention begins after the age of 5, only about 20% of nonverbal children are able to use expressive verbal communication (L. K. Koegel, 2000). Again, these findings support the use of naturalistic procedures with toddlers.

Pivotal Area of Motivation. One of the primary pivotal areas that have been identified is the area of motivation for social communication and learning. Perhaps one of the greatest challenges facing researchers, practitioners, and families of toddlers with ASD is these children’s apparent lack of motivation to learn and engage in social-communicative interactions with others (Churchill, 1971; R. L. Koegel & Egel, 1979; L. K. Koegel & Koegel, 1986; R. L. Koegel & Mentis, 1985). This

1971; R. L. Koegel & Egel, 1979; L. K. Koegel & Koegel, 1986; R. L. Koegel & Mentis, 1985). This characteristic lack of motivation is often exhibited by avoidance, inattention, noncompliance, and repeated temper tantrums, particularly in toddlers and preschoolers prior to intervention. There are a variety of theories in the literature as to why children with ASD exhibit lack of motivation to learn new tasks, the most common being that their frequent experience with failure leads to a state of

new tasks, the most common being that their frequent experience with failure leads to a state of learned helplessness (R. L. Koegel & Egel, 1979) in which it appears that the children are “giving up” (R. L. Koegel, Schreibman et al., 1989). The teaching methodology of PRT was designed specifically to address this characteristic lack of motivation by enhancing the response–reinforcer relationship within the context of communicative, social, and behavioral teaching goals. The specific

within the context of communicative, social, and behavioral teaching goals. The specific motivational procedures of PRT include establishing attention and providing clear prompts, incorporating child choice of materials, interspersing maintenance and acquisition tasks, providing contingent and immediate reinforcement, reinforcing attempts, and employing natural reinforcers. A large body of empirical research supports the use of these individual motivational components with a variety of age

research supports the use of these individual motivational components with a variety of age groups and functioning levels (Dunlap & Koegel, 1980; R. L. Koegel, Dyer, et al., 1987; R. L. Koegel & Egel, 1979; R. L. Koegel et al., 1988; R. L. Koegel & Williams, 1980; Williams, Koegel, & Egel, 1981) and the pivotal role of this motivational package in producing widespread positive effects in the social-communicative behavior of children with ASD (R. L. Koegel, O’Dell, et al., 1987; R. L. Koegel et

behavior of children with ASD (R. L. Koegel, O’Dell, et al., 1987; R. L. Koegel et al., 1992). Logically, beginning to address motivation, particularly addressing the key problem areas in ASD, in the toddler years increases the likelihood of positive long-term prognoses (L. K. Koegel, Koegel, Shoshan, et al., 1999).

Pivotal Area of Attention to Multiple Cues. Research evidence indicates that children with ASD exhibit patterns of stimulus overselectivity, described as having difficulties in responding to multiple cues in their environments (R. L. Koegel & Wilhelm, 1973; Lovaas & Schreibman, 1971; Lovaas, Schreibman, Koegel, & Rehm, 1971; Reynolds, Newsom, & Lovaas, 1974). This pattern begins very early in life in all children, but seems to persist beyond normal developmental levels in children with ASD (R.

in all children, but seems to persist beyond normal developmental levels in children with ASD (R. L. Koegel & Koegel, 1995; Schover & Newsom, 1976). Given that multiple cues are typical of most learning environments, it has been suggested that stimulus overselectivity may be related to many of the deficits characteristic of ASD, including language deficits, prompt dependency, trouble with imitation and observational learning, and difficulty in generalizing newly learned behaviors (Lovaas,

and observational learning, and difficulty in generalizing newly learned behaviors (Lovaas, Koegel, & Schreibman, 1979; Schreibman & Koegel, 1982). However, studies have shown that children with ASD can be taught to respond to multiple cues (R. L. Koegel, Dunlap, Richman, & Dyer, 1981; R. L. Koegel & Schreibman, 1977; Schreibman, Koegel, & Craig, 1977) and that broadening their abilities in this area may allow children to benefit from more typical teaching environments (Burke & Cerniglia, 1990;

may allow children to benefit from more typical teaching environments (Burke & Cerniglia, 1990; R. L. Koegel, Koegel, & O’Neill, 1989; Schreibman, 1997; Schreibman, Charlop, & Koegel, 1982). In toddlers, targeting multiple cues in areas such as joint attention, appropriate toy play, socialization, and communication can affect the restricted interests evidenced in children with ASD (R. L. Koegel & Koegel, 2006). Consequently, responsivity to multiple cues has been identified as a pivotal area

& Koegel, 2006). Consequently, responsivity to multiple cues has been identified as a pivotal area for intervention that, when targeted, can broadly improve outcomes for children with ASD by allowing them to learn more accurately and efficiently from their natural environments (L. K. Koegel, Koegel, Harrower, et al., 1999; Rosenblatt, Bloom, & Koegel, 1995).

Pivotal Area of Child Self-Initiations. Typically developing children begin initiating socially in the first months of life. During the toddler years, specific initiations, such as question asking (e.g., pointing to an item and saying “Dat?”—an early form of the question “What’s that?”—as a request for information) generally emerges in a child’s first group of words. Though children with ASD often show low rates or an absence of initiating social-communicative interactions relative to their

show low rates or an absence of initiating social-communicative interactions relative to their typically developing peers, research has indicated that they can be taught to make initiations (L. K. Koegel, Camarata, Valdez-Menchaca, & Koegel, 1998; R. L. Koegel, Koegel, & Carter, 1999; Shukla, Surratt, Horner, & Albin, 1995; Taylor & Harris, 1995) and that learning to make initiations appears to be associated with dramatically more favorable long-term outcomes (L. K. Koegel, Koegel, Shoshan, et

associated with dramatically more favorable long-term outcomes (L. K. Koegel, Koegel, Shoshan, et al., 1999). Given that the acquisition of this skill allows children to take advantage of widespread learning opportunities in natural environments, child self-initiations have been identified as a pivotal area (L. K. Koegel, Koegel, Harrower, et al., 1999; L. K. Koegel, Koegel, Shoshan, et al., 1999). When a child is motivated and has the skills necessary to initiate his or her own learning, that

When a child is motivated and has the skills necessary to initiate his or her own learning, that child can learn outside the adult-defined teaching context and thus can benefit from increased autonomy and opportunities for self-determination.

NATURALISTIC TEACHING PROCEDURES The identification of the pivotal areas treated with naturalistic teaching procedures described below is consistent with the current focus in the behavioral literature on effective and efficient interventions that produce widespread gains in socially valid domains (Carr et al., 2002; Strain & Schwartz, 2001; Schwartz & Baer, 1991; Wolf, 1978). Each of these areas has been identified as pivotal because intervention has resulted in improvements in broad areas of

has been identified as pivotal because intervention has resulted in improvements in broad areas of functioning beyond those directly targeted (L. K. Koegel, Koegel, Harrower, et al., 1999). Furthermore, improvements in these areas result in children with ASD having increased access to reinforcement in the natural environment and increased opportunities for inclusion in their communities (R. L. Koegel, Openden, et al., 2006). Implementation of these procedures as early as possible in a child’s

Openden, et al., 2006). Implementation of these procedures as early as possible in a child’s life, before the gap between the child and his or her peers is too great, increases the likelihood of more positive long-term outcomes (R. L. Koegel, Bruinsma, & Koegel, 2006). Like the results of both incidental teaching and milieu therapy, PRT results have been impressive in producing communication gains in young children. Again, group data for PRT reported at the Koegel Autism Center at the

gains in young children. Again, group data for PRT reported at the Koegel Autism Center at the University of California at Santa Barbara are consistent with those of the other two approaches in that approximately 90% of children who began intervention before the age of 3 years acquired speech as their primary form of communication following intervention (L. K. Koegel, 1995). Further, some children were reported as having overcome many other, or even most, of their symptoms of ASD and

children were reported as having overcome many other, or even most, of their symptoms of ASD and participated in full-inclusion classrooms and extracurricular activities and had social circles including typically developing peers (R. L. Koegel & Koegel, 2006; L. K. Koegel, Koegel, Shoshan, et al., 1999). In addition, current research at the Koegel Autism Center funded by the National Institute of Mental Health is evaluating the use of PRT in teaching early communication skills to toddlers with

Mental Health is evaluating the use of PRT in teaching early communication skills to toddlers with ASD (R. L. Koegel & Schreibman, 2006), and results from this project will be available in the near future.

Overall, research studies relating to the naturalistic interventions tend to share a number of characteristics supporting the importance of these components. First, all of the naturalistic interventions discussed above emphasize teaching that occurs throughout ongoing, daily activities and routines that are meaningful to the child (e.g., at home, in school, and in other community settings). Second, each of these approaches suggests that the environment be arranged to enable both child

Second, each of these approaches suggests that the environment be arranged to enable both child communication and teaching opportunities. Third, following the child’s lead and including child choice are extremely critical for improving child responsivity. That is, instruction should be in response to the child’s interests, desires, and needs. In addition, in all of these newer approaches, natural reinforcers are described as being essential. In other words, communication attempts by the toddler

reinforcers are described as being essential. In other words, communication attempts by the toddler should be reinforced with positive natural consequences (e.g., toddler says “uh” for “up”: toddler should be picked up.). Incidental, milieu, and pivotal response teaching have been shown to be especially effective in teaching early expressive communication skills to children with ASD, and studies have documented success rates higher than those of previous, more structured discrete trial

studies have documented success rates higher than those of previous, more structured discrete trial approaches (Kaiser et al., 1993; R. L. Koegel, O’Dell, et al., 1987; L. K. Koegel, 1995; McGee et al., 1992). As McGee and colleagues (1999) discuss, teaching throughout daily meaningful activities and routines in the child and family’s natural environmental is a departure from traditional behavioral methods, which have usually emphasized drill instruction, distraction-free settings,

behavioral methods, which have usually emphasized drill instruction, distraction-free settings, teacher-directed learning trials, and artificial reinforcement (i.e., rewards and responses usually have no relationship). Although the reviewed naturalistic methodologies differ in a variety of ways from earlier, more traditional models of applied behavior analysis, it should be noted that the same principles of operant learning underscore both intervention orientations. That is, both naturalistic

of operant learning underscore both intervention orientations. That is, both naturalistic and more traditional “discrete trial” intervention approaches focus on the precision of reinforcement delivery, stimulus presentation that supports errorless learning, and many components of discrimination training (McGee et al., 1999). Furthermore, it is equally, if not more, important to note that naturalistic interventions did not arise as a rejection of more traditional discrete trial instruction, but

interventions did not arise as a rejection of more traditional discrete trial instruction, but as a response to the need to address issues of generalization, maintenance, and spontaneity. The research accomplished by the naturalistic approaches discussed above did exactly that; children with ASD are reported as being better able to generalize, maintain, and spontaneously use language when such naturalistic approaches are utilized (R. L. Koegel, O’Dell, et al., 1987; McGee et al., 1983).

CONTEXTUAL CONSIDERATIONS FOR TREATMENT DELIVERY In considering treatment issues related to toddlers with ASD, it is also important to consider contextual factors affecting treatment delivery, such as when to begin treatment, where treatment should be conducted, how much treatment is needed, and who should deliver the treatment. For toddlers, issues such as the continuity between early detection and early intervention and issues of parent involvement, intensity, and individualization of

and early intervention and issues of parent involvement, intensity, and individualization of intervention have become increasingly important.

Early Detection There is no doubt that significant benefits result from beginning intervention at the earliest point possible. For instance, data from our large studies suggest that if PRT begins before the age of 3, more children will have positive outcomes in the area of communication than when intervention begins after 3 years of age (R. L. Koegel & Koegel, 1995; R. L. Koegel & Koegel, 2006). These data clearly support the advantage of beginning intervention in the toddler years, however,

These data clearly support the advantage of beginning intervention in the toddler years, however, early intervention requires early detection. There are a number of screening devices for early detection of ASD (e.g., Modified CHecklist for Autism in Toddlers, M-CHAT; Robins, Fein, Barton, & Green, 2001; Screening Tool for Autism in Two-Year-Olds, STAT; Stone, Coonrod, & Ousley, 2000). Clinical diagnosis made by an experienced clinician based on history information, direct multidomain

diagnosis made by an experienced clinician based on history information, direct multidomain assessment, and parent interview currently constitute the gold standard in diagnosing young children with ASD (see Volkmar et al., Chapter 1, and Bishop et al., Chapter 2, this volume for discussion of early diagnosis). Current reports suggest that clinical diagnosis in the second and third years of life is relatively stable (e.g., Lord, 1995; Chawarska, Paul, et al., 2007). Again, studies suggest that

is relatively stable (e.g., Lord, 1995; Chawarska, Paul, et al., 2007). Again, studies suggest that symptoms appear before or about 12 months (Adrien et al., 1993; Chawarska, Klin, et al., 2007; Chawarska, Paul, et al., 2007; see the review in Goin & Myers, 2004; Osterling et al., 2002; see also Volkmar et al., Chapter 1, this volume) and that a vast majority of parents notice first symptoms by the age of 2 (De Giacomo & Fombonne, 1998; Shah, 2001; Siegel, Pliner, Eschler, & Elliott, 1988).

the age of 2 (De Giacomo & Fombonne, 1998; Shah, 2001; Siegel, Pliner, Eschler, & Elliott, 1988). Concerns about the importance of early detection have resulted in the recent initiative of the Centers for Disease Control and Prevention, “Learn the Signs. Act Early,” which calls for developmental screenings to include important behavioral, cognitive, and communication milestones (e.g., play skills, social communication skills) in order to identify developmental delays such as ASD at an earlier

social communication skills) in order to identify developmental delays such as ASD at an earlier age (Centers for Disease Control and Prevention, 2006). Overall, as the processes of screening and identification of toddlers with ASD become more efficient, intervention providers will be faced with increasing numbers of very young children in need of behavioral intervention services. Comprehensive developmental assessments of these children at the time of diagnosis will have important implications

assessments of these children at the time of diagnosis will have important implications for treatment (Volkmar et al., 2005) and can play a crucial role in identifying strengths and important target areas for intervention.

Intensity of Intervention There is no doubt that children with ASD benefit from intensive interventions. In a 1987 study, Lovaas suggested that 49% of the children who received more than 40 hours of one-to-one treatment per week achieved normal intellectual and educational functioning. Only 2% of the children in the control group, which received only 10 hours of intervention per a week, achieved comparable intellectual and educational functioning. Although the total number of hours needed is

comparable intellectual and educational functioning. Although the total number of hours needed is economically and politically controversial, no one has doubted the fact that the children do need intensive intervention programs. One economical, practical, and developmentally desirable method of increasing the number of intervention hours a child receives is to incorporate parents as active participants in the intervention programs. Often this is accomplished with a “practice-with-feedback”

in the intervention programs. Often this is accomplished with a “practice-with-feedback” model, wherein the parents select target goals and then are taught the intervention procedures while receiving feedback from a professional in the area of ASD (see, e.g., R. L. Koegel & Koegel, 2006). This has been both an effective and cost-efficient method of providing an intensive intervention program. Issues in parent education programs are discussed in the following section.

Parent Education The literature is replete with studies documenting the effectiveness of parent education programs (Barlow & Stewart-Brown, 2000; Corcoran, 2000; Eyberg & Robinson, 1982; Forehand & Kotchick, 2002; MacKenzie, Fite, & Bates, 2004; Nixon, 2001; Sampers, Anderson, Hartung, & Scambler, 2001) and the lack of maintenance of behavioral gains when parents do not participate in their children’s intervention programs (R. L. Koegel, Schreibman, Britten, Burke, & O’Neill, 1982). In fact,

intervention programs (R. L. Koegel, Schreibman, Britten, Burke, & O’Neill, 1982). In fact, the NRC highlighted the importance of family involvement and parent training by identifying this as one of the active ingredients in effective treatment programs for children with ASD (National Research Council, 2001). Because many parents desire to be involved in their children’s development, and because this practice is economically advantageous and increases the number of hours of treatment, many

this practice is economically advantageous and increases the number of hours of treatment, many programs now focus on parent education in treatment. In treatment of toddlers with ASD, some researchers have noted that parental involvement may be particularly important and developmentally appropriate, given the documented importance of intervention in the natural environment and the fact that parents play such an active role in the development of typical toddlers (Wetherby & Woods, 2006; Woods &

play such an active role in the development of typical toddlers (Wetherby & Woods, 2006; Woods & Wetherby, 2003). The basic assumption of behavioral parent training is that child behavior is learned and maintained through contingencies within the family context and that parents can be taught to change these contingencies in order to promote and reinforce appropriate behavior (Corcoran, 2000). In their meta-analysis of studies evaluating the effectiveness of behavioral parent training, Corcoran

their meta-analysis of studies evaluating the effectiveness of behavioral parent training, Corcoran (2000) found improvements in child behavior based on behavioral observation and parent and teacher reports, and improvements in parent adjustment relative to no-treatment and control conditions. Behavioral parent education programs have resulted in promising outcomes in terms of child improvements (Barlow & Stewart-Brown, 2000; MacKenzie et al., 2004; Nixon, 2001), parent use of skills and

(Barlow & Stewart-Brown, 2000; MacKenzie et al., 2004; Nixon, 2001), parent use of skills and adjustment (Eyberg & Robinson, 1982), and maintenance over time (Eyberg et al., 2001; Hood & Eyberg, 2003; Webster-Stratton & Reid, 2003). Another study examining the effects of parent management training (PMT) indicated changes in parenting practices, followed by decreases in child externalizing behaviors (DeGarmo, Patterson, & Forgatch, 2004). Additional follow-up data indicated that the decreases in

(DeGarmo, Patterson, & Forgatch, 2004). Additional follow-up data indicated that the decreases in externalizing behaviors mediated the relationship between PMT and the subsequent decreases in maternal depression. Additional research on parent education with families of children with ASD has demonstrated similar effects for parents, including generalized improvements in positive parent affect (Schreibman, Kaneko, & Koegel, 1991), positive family interactions (R. L. Koegel, Bimbela, & Schreibman,

Kaneko, & Koegel, 1991), positive family interactions (R. L. Koegel, Bimbela, & Schreibman, 1996), and decreases in maternal depression (Bristol, Gallagher, & Holt, 1993). Thus, actively including parents in the intervention process in the toddler years and beyond is not only helpful for the child, but for maternal mental health as well.

However, the specific manner in which parents are incorporated into the intervention process is important, as well as individualizing the parent education program to consider different family needs and circumstances. That is, studies in the broader fields of psychology and education suggest that not all parents benefit from traditional behavioral parent education programs (Forehand & Kotchick, 2002) and that some parents may need supplemental assistance or support in order to parent more

2002) and that some parents may need supplemental assistance or support in order to parent more effectively (Corcoran, 2000; Singer, 1993). Parent education appears to work best with highly motivated and well-functioning adults who are not currently coping with additional psychological or life stressors (Blechman, 1998). Marital distress, parental depression, severe child problem behaviors (or behavioral problems), and lack of social support may prevent some families from benefiting from

(or behavioral problems), and lack of social support may prevent some families from benefiting from traditional parent training (Baker, Landen, & Kashima, 1991; Stern, 2000; Webster-Stratton & Reid, 2003). In the treatment of families with children with disabilities, Singer, Golberg-Hamblin, Peckham-Hardin, Barry, and Santarelli (2002) estimated that approximately 30% of families do not benefit from traditional behavioral parent training, possibly owing to social and psychological stress, which

traditional behavioral parent training, possibly owing to social and psychological stress, which interferes with their acquisition and implementation of positive parenting strategies. Research evidence indicates that individuals seeking parent education to help them provide treatment delivery for their child may be under particular stress and at risk for symptoms of depression. First, young adults between 25 and 44 years of age show the highest rates of depression (Clark, Beck, & Alford, 1999),

between 25 and 44 years of age show the highest rates of depression (Clark, Beck, & Alford, 1999), and women may be about two times more likely to experience depression than men, especially in the presence of risk factors such as adverse life events, lack of social support, and poor or strained interpersonal relationships (Clark et al., 1999). In addition, having a child with a disability can put further stress on a family’s functioning (Anastopoulos, 1998; Corcoran, 2000). Parents of children

further stress on a family’s functioning (Anastopoulos, 1998; Corcoran, 2000). Parents of children with severe disabilities, such as ASD, are prone to higher levels of stress (Moes, 1995). Evidence indicates that mothers show particularly high levels of stress and depression, possibly due to their differential daily responsibilities for care of the children (Bristol et al., 1993; Calzada, Eyberg, Rich, & Querido, 2004; Moes, Koegel, Schreibman, & Loos, 1992). In addition, marital conflict,

Rich, & Querido, 2004; Moes, Koegel, Schreibman, & Loos, 1992). In addition, marital conflict, social isolation, socioeconomic stressors, or family dysfunction may make effective parenting even more difficult without more comprehensive support (Briesmeister & Schaefer, 1998; Forehand & Kotchick, 2002; Singer et al., 2002), and this type of stress and poor family functioning has been identified as a predictor of low parent self-efficacy and empowerment (Scheel & Rieckmann, 1998). Therefore,

as a predictor of low parent self-efficacy and empowerment (Scheel & Rieckmann, 1998). Therefore, parents of children referred for clinical treatment may be particularly at risk for feeling helpless and ineffective as parents, which in turn may further interfere with their ability to parent effectively. Given this problem, there is a need for additional research to identify specific strategies (e.g., collaborative, strengths-based, directive vs. non-directive) to be incorporated into the

(e.g., collaborative, strengths-based, directive vs. non-directive) to be incorporated into the process of parent education that may be more effective for families who have not benefited from traditional parent education approaches. That is, in order to better serve parents whose social and psychological distress may jeopardize their ability to fully benefit from traditional behavioral parent education programs, educational researchers have emphasized the importance of family support (Bass,

education programs, educational researchers have emphasized the importance of family support (Bass, 1996; Singer et al., 2002), empowerment (Fine & Gardner, 1991; Gerris, Van As, Wels, Janssens, 1998; Jones, Garlow, Turnbull, & Barber, 1996), and family resilience (Schwartz, 2002). Future research focusing on how best to combine teaching actual behavioral procedures and focusing on empowerment, family support, and systems perspectives (Beutler, Alomohamed, Moleiro, Romanelli, 2002; Cavell,

family support, and systems perspectives (Beutler, Alomohamed, Moleiro, Romanelli, 2002; Cavell, 2000; Kaiser et al., 1999) should be especially fruitful for families of toddlers.

Cultural Considerations Within the practice of parent education, another area that should receive research priority is the influence of cultural variables in parent education. This is particularly important, given the paucity of research on cultural considerations in providing services to children with ASD and their families (cf. Gorman & Balter, 1997). In fact, most research on parent education programs has been conducted with European American populations (Bennett & Grimley, 2001; Forehand &

programs has been conducted with European American populations (Bennett & Grimley, 2001; Forehand & Kotchick, 1996). Given the negative influence of stress on parenting practices, and the consideration that families with minority status may experience particular stress as a result of discrimination or socioeconomic disadvantage, parent education and support may be especially important for these families (Forehand & Kotchick, 1996; McDermott, 2000). Several researchers have begun to address

families (Forehand & Kotchick, 1996; McDermott, 2000). Several researchers have begun to address cultural considerations in working with parents of children with ASD (Elder, Valcante, Won, & Zylis, 2003), but this continues to be an area in need of much continued empirical investigation. Santarelli, Koegel, Casas, and Koegel (2001) discussed the importance of considering the family ecology and “contextual fit” of parenting programs for parents of children with ASD, particularly when working

“contextual fit” of parenting programs for parents of children with ASD, particularly when working with ethnically diverse populations. They emphasized the need for future research in identifying appropriate content for use with families from diverse backgrounds, as well as the need for additional research into instruction techniques that make up the process of parent education (Santarelli et al., 2001). Though there is a lack of sufficient empirical evidence indicating exactly how parent

al., 2001). Though there is a lack of sufficient empirical evidence indicating exactly how parent education programs should be conducted in order to best benefit ethnically diverse families, some of the literature on differences in parenting practices among ethnic groups may have implications for parent education (Forehand & Kotchick, 1996). In fact, many popular parenting programs may differentially incorporate values from the dominant European American culture, such as the importance of

incorporate values from the dominant European American culture, such as the importance of individualism, competition, speed, action, explicit communication, and strong work ethic, and may require modifications for appropriate use with diverse families (McDermott, 2000). For example, Zegarra (1998) suggested that modifications to make popular parenting programs more effective with the Latino community should include not only translations of materials into Spanish, but also modifications, such as

should include not only translations of materials into Spanish, but also modifications, such as the inclusion of extended family members in treatment, and more complex changes to existing protocols to recognize the importance of family privacy and parental authority in these families. These descriptions offer promising directions for parent education with diverse populations, but will require extensive research to clarify appropriate processes for designing effective, culturally relevant

extensive research to clarify appropriate processes for designing effective, culturally relevant parenting programs. Future research must also attend to additional socioeconomic factors that may influence the acceptability and effectiveness of parenting techniques in diverse populations (Gorman & Balter, 1997; Kotchick & Forehand, 2002).

Individualization of the Treatment Program The individualization of intervention services, as discussed earlier, is particularly important, given the heterogeneity in symptoms of children with ASD (Schreibman & Koegel, 2005). Targeted behaviors, the child’s response to a given intervention, the child’s age and cognitive and linguistic levels at intake and family factors, including any parent psychological or life stressors (discussed in detail above) need to be considered when developing an

or life stressors (discussed in detail above) need to be considered when developing an individualized, coordinated, and comprehensive program. Including the family in the development of treatment goals can increase the likelihood that intervention will be implemented and gains will be maintained. Addressing target behaviors that have the broadest and most socially significant impact for the child is essential. Finally, a thorough understanding of how the child’s environment reinforces,

child is essential. Finally, a thorough understanding of how the child’s environment reinforces, maintains, and punishes behaviors allows interventionists to develop goals that result in maximum effectiveness.

CONCLUSION Courts have held that, at minimum, a technically sound program must produce evaluation data to demonstrate an effective methodology that provides educational benefit for the child (Etscheidt, 2003). Program developers must have qualifications in the area of ASD and be able to develop appropriate treatment programs for toddlers with ASD that include procedural soundness, parent involvement, and documented outcomes (Etscheidt, 2003). Although naturalistic behavioral interventions have

and documented outcomes (Etscheidt, 2003). Although naturalistic behavioral interventions have firm empirical support, future work focusing on the most effective ways to implement these procedures, taking into account individual child and family characteristics as well as cultural factors, will be essential for advancing the field and improving outcomes for toddlers with ASD and their families.

Children with autism spectrum disorder (ASD) often receive controversial treatments—interventions that are popular despite an absence of scientific or theoretical support. As many as one-third of all newly diagnosed children with ASD participate in such treatments (Levy, Mandell, Merhar, Ittenbach, & Pinto-Martin, 2003). Many others start soon after they begin conventional therapies such as behavioral or educational services, and some undergo multiple ones (Smith & Antolovich, 2000), which may

or educational services, and some undergo multiple ones (Smith & Antolovich, 2000), which may continue into adolescence (Witwer & Lecavelier, 2005). The use of controversial treatments for children with ASD is a long-standing issue (Rimland, 1964), and the number of different treatments and their rate of use have grown over time (Levy & Hyman, 2003). The most common controversial treatments for children with ASD are sensory–motor therapies such as auditory integration training, bonding

for children with ASD are sensory–motor therapies such as auditory integration training, bonding therapies such as Options (also called Son-Rise; Kaufman, 1976), and several forms of complementary and alternative medicine (CAM) interventions such as vitamin therapies and special diets. The proliferation of controversial treatments for children with ASD is probably due to many factors. Among them is that the precise etiology or etiologies of ASD remain unknown, fueling speculation and debate

is that the precise etiology or etiologies of ASD remain unknown, fueling speculation and debate about possible causes and remedies (Levy & Hyman, 2005). Another is that ASD is a complex behavioral syndrome with many areas of need, each of which is potentially a focus of intervention (Lovaas & Smith, 2003). Moreover, caregivers may be eager to try a variety of treatments in search of a favorable outcome for their children. Their hopes may be high because, in some cases, the onset of ASD occurs

outcome for their children. Their hopes may be high because, in some cases, the onset of ASD occurs after a period of apparently typical development (Luyster et al., 2005), and children may be free of obvious physical abnormalities and retain isolated areas of age-appropriate skills. Reports of children who improve markedly may add to caregivers’ hopes (e.g., Seroussi, 2000). In addition, caregivers often feel a sense of urgency, which may be fueled by the significant behavioral difficulties

often feel a sense of urgency, which may be fueled by the significant behavioral difficulties associated with ASD and the stress on caregiver–child relationships arising from a disorder characterized above all by impaired reciprocal social interaction (Bouma & Schweitzer, 1990; Hoppes & Harris, 1990).

Caregivers may hear more about controversial treatments than about treatments with rigorous, scientific evidence for safety and efficacy. Controversial treatments attract far more media publicity than evidence-based treatments, which include behavioral and educational interventions (Lord et al., 2002) and psychopharmacological therapies (McCracken et al., 2002; Research Units on Pediatric Psychopharmacology Autism Network, 2005). Moreover, controversial treatments are frequently touted as

Autism Network, 2005). Moreover, controversial treatments are frequently touted as cures, whereas evidence-based treatments yield only limited improvement, as they increase adaptive functioning for most children with ASD but do not eliminate the disorder. Some controversial treatments are relatively straightforward to implement; in contrast, evidence-based treatments are hard to obtain in many communities because they require supervision from highly trained professionals and may be expensive.

because they require supervision from highly trained professionals and may be expensive. Because all of these factors are likely to persist into the foreseeable future, practitioners and families can expect controversial treatments for children with ASD to remain popular. Therefore, to make informed decisions, it is essential to be able to distinguish controversial from established treatments and to be aware of the most common controversial treatments. To resolve controversies and advance the

to be aware of the most common controversial treatments. To resolve controversies and advance the field, the scientific community must identify constructive ways to respond to advocates of controversial treatments, and practitioners and families must find ways to work together when controversial treatments are being considered for a child with ASD.

DISTINGUISHING CONTROVERSIAL FROM ESTABLISHED TREATMENTS  Standards of Evidence The only evidence for many controversial treatments consists of subjective information such as case reports, anecdotes, testimonials from parents or practitioners, and surveys. Reports that a child improved or that families gave high marks for a treatment in a survey are encouraging and may indicate that a treatment deserves further study. Unfortunately, this is not proof that the treatment is effective. Many other

further study. Unfortunately, this is not proof that the treatment is effective. Many other explanations are plausible. For example, additional interventions that the children were concurrently receiving, such as behavioral and educational services, may account for favorable outcomes. Furthermore, as children grow up, they may develop new abilities regardless of treatment. It is even possible that reported improvements can reflect parents’ or practitioners’ desires to see gains, rather than

that reported improvements can reflect parents’ or practitioners’ desires to see gains, rather than real progress. Scientific studies incorporate methodologies that make it possible to test whether a treatment is truly associated with improved outcomes. For instance, participants may be randomly assigned to two groups. One group receives the treatment, and the other is untreated; then the outcomes of the two groups are statistically compared. This design, called a randomized clinical trial

of the two groups are statistically compared. This design, called a randomized clinical trial (RCT), can offer the strongest test of whether a treatment is effective. The randomization maximizes the probability that children in the treatment group are similar to those in the no-treatment group prior to intervention. If the groups are similar prior to treatment but differ afterward, the posttreatment difference is likely to be attributable to the intervention. Optimally, an RCT includes a large

difference is likely to be attributable to the intervention. Optimally, an RCT includes a large number of children in each group (at least 20, often considerably more) so that the statistical analyses have adequate power to detect differences in outcome between groups. It may also include multiple treatment sites and practitioners to assess the consistency of results at different sites, with different personnel. Another appropriate research strategy is the use of single-case designs. These

different personnel. Another appropriate research strategy is the use of single-case designs. These designs involve comparing a baseline phase, in which an individual receives no treatment, with one or more intervention phases in which treatment is provided to the individual. Data are collected continuously on the outcome measure. If scores on the outcome measure consistently improve during intervention relative to baseline, one may conclude that the treatment was effective for that individual.

relative to baseline, one may conclude that the treatment was effective for that individual. However, because the design involves only one individual, multiple studies by independent investigators are required to confirm the findings. A series of single-case studies may need to be followed by an RCT in order to test the treatment with a sufficiently large number of individuals (Smith et al., 2007).

In both RCTs and single-case studies, standardized measures such as the Autism Diagnostic Interview—Revised (ADI-R; Rutter, LeCouteur, & Lord, 2003) and the Autism Diagnostic Observation Schedule–Generic (ADOS-G; Lord, Rutter, DiLavore, & Risi, 2001) should be used to confirm the diagnosis. In addition, investigators should show that the outcome measures are valid indicators of improvement, and the measures should reflect readily observable gains in functioning such as increased communication

the measures should reflect readily observable gains in functioning such as increased communication or reduced aggression, rather than vague constructs such as “greater focus” or “improved sense of self.” Moreover, to ensure unbiased data collection, individuals who are unaware of the purpose of the study or the children’s treatment histories should administer and score the measures. Assessments should also be conducted to ascertain whether treatment was delivered as intended, in keeping with a

also be conducted to ascertain whether treatment was delivered as intended, in keeping with a standard protocol or set of procedures. When possible, intervention should be administered in a double-blind, placebo-control design. In this approach, children and practitioners are unaware of whether the children are receiving treatment or a placebo. For example, in a study of a medication or vitamin therapy, the pills that contain the active ingredient can be made identical to placebo pills.

therapy, the pills that contain the active ingredient can be made identical to placebo pills. Investigators can postpone telling the children and practitioners which pill the children received until the completion of the study. Although this strategy is not viable for most behavioral or educational studies because the interventions cannot be disguised, it is feasible for most CAM treatments.

Table 9.1 presents a standard system for rating the evidence from scientific studies and shows that anecdotal reports are considered the weakest form of evidence, and favorable results from multiple studies that incorporate strong designs constitute the strongest evidence. When only anecdotal evidence is available, a treatment is considered to be essentially unproven; if studies were conducted, they could find that the treatment was helpful, harmful, or neither. Families and practitioners

they could find that the treatment was helpful, harmful, or neither. Families and practitioners should consider such treatment experimental and should be very cautious about implementing it (or decide not to try it). However, when multiple, well-designed studies indicate that a treatment is effective, one can be confident that the treatment really is effective. Table 9.2 summarizes the criteria for a strong scientific study.

| Grade | Criteria | |---|---| | I | Evidence from studies of strong design, with minor flaws at most and free from serious doubts about bias. Results are both clinically important and consistent. Results are free from concerns about generalizability. Studies with negative results have sufficiently large samples to have adequate statistical power. |

| II | Evidence from studies of strong design, but there is some uncertainty owing to inconsistencies in findings, or concern about generalizability, bias, research design flaws, or sample size (for negative findings, again). OR, consistent evidence, but from studies of weaker design. |
| III | Evidence from a limited number of studies of weaker design. Studies with strong design have not been done or are inconclusive. |

| IV | Support solely from informed professional commentators based on clinical experience without substantiation from the published literature. |
*Note. Adapted from Joint Commission Resources. (2000). Copyright 2000 by Joint Commission Resources. Adapted by permission.*

**TABLE 9.2. Characteristics of Scientifically Sound Studies on Treatment** 1. Participants are assigned randomly to groups (or use of single-subject experimental designs, with multiple replications by independent investigators).
2. The study includes a large enough number of participants to support meaningful statistical analyses.
3. Diagnosis is based on standardized measures. 4. Validated outcome measures relating to improvements in functioning are collected.

5. Measures are collected in an unbiased manner. 6. Assessments are conducted to determine whether treatment adheres to a standard, predetermined set of procedures.
7. When possible, the study is performed double-blind (participants and practitioners are unaware of whether the treatment or a placebo is being provided).

Plausibility Although scientific evidence is the primary criterion for evaluating a treatment, the theoretical basis of the treatment is another important consideration. To be plausible, a treatment must address a problem known to be associated with ASD, and its mechanism for producing change must be consistent with principles of behavior or biology. For example, Floortime is an intervention that involves playfully obstructing children’s activities (Greenspan & Wieder, 1999). Although it has

involves playfully obstructing children’s activities (Greenspan & Wieder, 1999). Although it has not been evaluated in studies with strong scientific designs (Greenspan & Wieder, 1997), it is viewed as a possibly effective intervention (National Research Council [NRC], 2001). Its purpose is to improve reciprocal social interactions, which are a major area of difficulty for children with ASD, via sustained back-and-forth communication during unstructured games. Playful obstruction is similar to

sustained back-and-forth communication during unstructured games. Playful obstruction is similar to a scientifically validated instructional method called incidental teaching (Hart & Risley, 1980), which is often a useful component of intervention programs for children with ASD. In contrast, “gentle teaching” is a therapy that is said to provide “unconditional and authentic valuing” of individuals with ASD in order to facilitate bonding or attachment to caregivers (McGee & Gonzales, 1990).

with ASD in order to facilitate bonding or attachment to caregivers (McGee & Gonzales, 1990). However, most individuals with ASD already display attachment to caregivers (Sigman & Mundy, 1989), and it is unclear as to what unconditional and authentic valuing is or how it would be beneficial. Because it does not address a known problem in ASD and does not include interventions known to change behavior, gentle teaching is not usually regarded as a plausible treatment. These criteria are also

behavior, gentle teaching is not usually regarded as a plausible treatment. These criteria are also applicable to biomedical interventions. For example, mood swings are a problem for some children with ASD. Psychotropic medication may be a reasonable intervention even if the medication has not been studied in children with ASD. Because of government regulations, all medications undergo extensive testing for safety and efficacy before becoming available in clinical practice. Psychotropic

testing for safety and efficacy before becoming available in clinical practice. Psychotropic medications alter the function of neurotransmitters in the brain, and some have been shown to be effective in reducing mood swings associated with disorders other than ASD. For these reasons, such medications are potentially effective for children with ASD, though close monitoring by the prescribing physician is necessary. In contrast, although ASD is known to be a neurological disorder that affects

is necessary. In contrast, although ASD is known to be a neurological disorder that affects brain development, many CAM interventions focus on entirely different parts of the body such as the gastrointestinal system. It is unclear whether individuals with ASD are at any greater risk than other individuals for such problems. It is also unknown whether interventions such as hormone injections or dietary changes are safe or effective in addressing these problems if they do exist, and whether

or dietary changes are safe or effective in addressing these problems if they do exist, and whether improvement in gastrointestinal functioning is relevant to the underlying neurological difficulties in ASD. Thus, the theoretical basis for many CAM interventions is often questionable.

Potential “Red Flags” Unfortunately, families and professionals often view particular treatments as having support from scientific studies and theories even when the consensus of the scientific community advises otherwise (Smith & Antolovich, 2000). Treatments may be pseudoscientific (described as proven and well-grounded in established theory yet lacking any such basis), and it may be difficult to distinguish between scientific and pseudoscientific approaches. However, one study identified a

to distinguish between scientific and pseudoscientific approaches. However, one study identified a set of 10 “red flags” that may increase nonspecialists’ ability to spot pseudoscientific treatments (Finn, Bothe, & Bramlett, 2005; see Table 9.3):

**TABLE 9.3. Red Flags for Identifying a Treatment as Pseudoscientific** 1. Does the evidence in support of the treatment rely on personal experience and anecdotal accounts?
2. Is the treatment approach disconnected from well-established scientific models or paradigms?
3. Is the treatment unable to be tested or disproved? 4. Does the treatment remain unchanged even in the face of contradictory evidence?

5. Is the rationale for the treatment based only on confirming evidence, with disconfirmatory evidence ignored or minimized?
6. Are the treatment claims incommensurate with the supporting evidence for those claims?
7. Are the treatment claims unsupported by evidence that has undergone critical scrutiny?
8. Is the treatment described by terms that appear to be scientific but upon further examination are determined not to be?

9. Is the treatment based on grandiose claims or poorly described outcomes? 10. Is the treatment claimed to make sense only within a vaguely described holistic framework?
*Note. Adapted from Finn, Bothe, and Bramlett (2005). Copyright 2005 by the American Speech–Language–Hearing Association. Adapted by permission.*

1. Does the evidence in support of the treatment rely on personal experience and anecdotal accounts? As discussed, anecdotes may suggest that scientific testing of a treatment would be worthwhile but in themselves are weak evidence that the treatment is effective.

2. Is the treatment approach disconnected from well-established scientific models or paradigms? As noted, a treatment should address problems known to be associated with ASD and should be consistent with principles of behavior and biology.

3. Is the treatment unable to be tested or disproved? To qualify as scientific, assertions about treatment effects must be stated in such a way that direct observation and experiments can either confirm or falsify them. Otherwise, the credibility of the treatment depends solely on the authority of its developer. However, assertions about controversial treatments are often untestable and therefore pseudoscientific. For example, the developer of one controversial treatment contended that any

pseudoscientific. For example, the developer of one controversial treatment contended that any intervention for children with ASD would be impossible to study because treatment “cannot observe the rigors of a ‘scientific’ experiment since it must, in its course, pursue the vagarities of life which are nothing if not unpredictable” (Bettelheim, 1967, p. 6). Proponents of another controversial treatment maintained that negative research findings could never be used as evidence against the

treatment maintained that negative research findings could never be used as evidence against the intervention because the presence of an objective observer (as required for research) disrupted the therapeutic relationship so severely that treatment gains were lost (Biklen & Cardinal, 1997).

4. Does the treatment remain unchanged even in the face of contradictory evidence? Established treatments such as behavioral interventions continually evolve as a result of new research findings. However, many controversial treatments originated many years ago and are still implemented in essentially their original form, without revisions based on scientific advances (see, e.g., Kaufman, 1976).

5. Is the rationale for the treatment based only on confirming evidence, with disconfirmatory evidence ignored or minimized? Scientific evaluation of a treatment requires consideration of all evidence from relevant well-designed studies, including both positive and negative results. However, advocates of controversial treatments sometimes focus only on supporting evidence. For example, proponents of vitamin therapies sometimes cite a large number of uncontrolled studies that appear to support

of vitamin therapies sometimes cite a large number of uncontrolled studies that appear to support these therapies but do not cite relevant RCTs, all of which so far indicate that the therapies are not effective (see, e.g., Rimland, 2000).

6. Are the treatment claims incommensurate with the supporting evidence for those claims? Advocates of a controversial treatment may recommend the treatment for children with ASD solely on the basis of anecdotal information. They also may divert attention away from this weak evidence by criticizing other treatments, arguing that skepticism about their treatment reflects opposition from a narrow-minded establishment (Rimland, 1992) or insisting that scientific tests of the treatment are

narrow-minded establishment (Rimland, 1992) or insisting that scientific tests of the treatment are superfluous (Biklen & Cardinal, 1997).

7. Are treatment claims unsupported by evidence that has undergone critical scrutiny? Before publication in a scholarly journal, reports of scientific studies undergo careful peer review. The report is read by several experts, whose identities are usually withheld from the authors of the report so that they can give honest feedback. The experts critique the adequacy of the research methodology, soundness of the conclusions, and contribution to scientific knowledge. Based on the experts’

soundness of the conclusions, and contribution to scientific knowledge. Based on the experts’ critique, an editor makes a recommendation for or against publishing the report. Although not a perfect process, peer review increases the likelihood that published reports are reliable and useful sources of information. Many controversial treatments, however, do not receive this kind of scrutiny and are instead publicized through press releases to the popular media, websites, advertisements,

and are instead publicized through press releases to the popular media, websites, advertisements, workshops, and the like.

8. Is the treatment described by terms that appear to be scientific but upon further examination are found not to be scientific at all? Controversial treatments often use scientific-sounding jargon to describe ideas that lack a scientific foundation. For example, the developer of sensory integration therapy (SIT) asserted, “Sensations [from activities such as riding a scooter board] and the resulting movements leave memories stored in his brain, and so the child gradually makes his body

resulting movements leave memories stored in his brain, and so the child gradually makes his body percept more accurate” (Ayres, 1979, p. 143). However, no direct evidence of changes in the brain or behavior is provided. Thus, despite the technical terms, the reported benefits are merely the subjective impressions of one practitioner, rather than the results of scientific study.

9. Is the treatment based on grandiose claims or poorly described outcomes? Many controversial treatments are said to produce a “cure,” “miracle,” “breakthrough,” “transformation,” or “revolution.” Such unabashed self-promotion should be a warning that marketing rather than science is the main impetus for the treatment. Outcomes for other treatments are described in fuzzy terms. For example, in addition to improving “body percept,” SIT is said to help children pull their lives together, develop

to improving “body percept,” SIT is said to help children pull their lives together, develop sensory maps, and improve postural and equilibrium responses (Ayres, 1979, pp. 143–147). Because these outcomes are so nebulous, it is impossible to test whether the intervention achieves them.

10. Is the treatment claimed to make sense only within a vaguely described holistic framework? Controversial treatments are often portrayed as “natural,” “organic,” “purifying,” or “cleansing.” They may also be depicted as designed to help the “whole person” through processes such as “unconditional and authentic valuing” (as in gentle teaching). The use of such feel-good words cannot substitute for a clear, concrete explanation of how the treatment works.

COMMON CONTROVERSIAL TREATMENTS FOR ASD  Sensory–Motor Therapies Children with ASD often react incongruously to sensory input. They may be so unresponsive when their names are called that caregivers wonder whether they are deaf, yet they may cover their ears and appear pained in response to other sounds such as noises made by household appliances (Kanner, 1943). Many practitioners infer that these reactions are a sign of a sensory dysfunction that causes children with ASD to be either

that these reactions are a sign of a sensory dysfunction that causes children with ASD to be either under-aroused or overaroused by everyday sounds, sights, and other environmental events. Many also suggest that children with ASD have a motor apraxia—difficulty in producing an adaptive response to sensory input despite having the desire and physical ability to do so. It remains unknown whether these hypotheses are correct, as research has yielded conflicting findings regarding the presence or

hypotheses are correct, as research has yielded conflicting findings regarding the presence or absence of sensory dysfunction and apraxia in children with ASD (Rogers & Ozonoff, 2005). It is therefore unclear whether or how to intervene for these proposed areas of difficulty. Nevertheless, many children with ASD receive sensory–motor treatments.

Sensory Integration Therapy Sensory integration therapy (SIT) is designed to address sensory dysfunction through activities that provide vestibular, proprioceptive, or tactile senations (Ayres, 1972, 1979). Vestibular activities focus on the movement of the body through space and include swinging, rolling, jumping on a trampoline, and riding on scooter boards. Proprioceptive activities emphasize stimulating the muscles and joints and may consist of “smooshing” the child between gymnasium pads

stimulating the muscles and joints and may consist of “smooshing” the child between gymnasium pads or pillows to provide “deep pressure” or providing “joint compression” by repeatedly tightening the individual’s joints at the wrist or elbow. Tactile activities pertain to the child’s responses to being touched; examples include brushing the child’s body and providing textured toys for the child to use during play. The application of a “sensory diet” is a related clinical practice in which

to use during play. The application of a “sensory diet” is a related clinical practice in which practitioners develop individualized plans to meet the presumed sensory needs of the child with ASD. Such a plan may include a schedule for having children play gross motor games, wear weighted vests or wrist bands, put on a body sock, brush their gums and massage their faces, and modify their environment (e.g., adjusting the lighting) in order to improve or alter arousal states and affect

environment (e.g., adjusting the lighting) in order to improve or alter arousal states and affect (Alhage-Kientz, 1996). SIT practitioners are usually occupational therapists (OTs). These practitioners typically conduct 30- to 60-minute sessions one to three times per week and often direct parents and paraprofessionals such as classroom aides to carry out the intervention at other times throughout the day (Bundy & Murray, 2002). Most OTs view SIT as a standard part of treatment for children

the day (Bundy & Murray, 2002). Most OTs view SIT as a standard part of treatment for children with ASD (Watling, Dietz, Kanny, & McLaughlin, 1999), and SIT takes place in a variety of settings, including many public schools, residential placements, and independent agencies (Smith, Mruzek, & Mozingo, 2005). Four published reports contained objective data on SIT for children with autism: one case study (Ray, King, & Grandin, 1988), two uncontrolled studies with small samples and no comparison

study (Ray, King, & Grandin, 1988), two uncontrolled studies with small samples and no comparison groups (Case-Smith & Bryan, 1999; Linderman & Stewart, 1998), and one study with a larger sample that failed to demonstrate gains in speech following participation in sensory activities (Reilly, Nelson, & Bundy, 1984). Dawson and Watling (2000) commented, “There exist so few studies that conclusions cannot be drawn” (p. 419).

Auditory Integration Training Auditory integration training (AIT; Berard, 1993) is based on the view that the hypersensitive hearing displayed by some children with ASD causes them to avoid social interactions and tune out what others say. AIT practitioners are human service professionals who complete a training workshop and obtain certification. The Tomatis and Berard methods are the most influential forms of AIT. Both begin with an audiogram (observations by an AIT practitioner) to determine

forms of AIT. Both begin with an audiogram (observations by an AIT practitioner) to determine the frequencies at which a child’s hearing appears to be too sensitive. Children then listen to music played through a device that filters out the threshold frequencies identified by the audiogram. In the Tomatis method, children may also speak into a microphone as their own filtered speech is played back. This method typically involves 60–90 hours of intervention in sessions lasting 1–3 hours. The

back. This method typically involves 60–90 hours of intervention in sessions lasting 1–3 hours. The Berard method involves a total of 10 hours of intervention over a 2-week period. Several small RCTs of AIT have obtained mixed results, with some studies showing benefits and others failing to do so (Sinha, Silove, Wheeler, & Williams, 2005). Additional studies are needed to evaluate AIT more conclusively.

Facilitated Communication Facilitated communication (FC; Biklen, 1993) derives from the hypothesis that individuals with ASD have a motor apraxia that prevents them from expressing themselves despite a sophisticated understanding of spoken and written language. To overcome this conjectured problem, trained facilitators (professionals or nonprofessionals who complete a workshop on the treatment) hold a person’s hands, wrists, or arms to spell messages on a keyboard or a board with printed

hold a person’s hands, wrists, or arms to spell messages on a keyboard or a board with printed letters. FC practitioners assert that this intervention suddenly and dramatically increases appropriate language displayed by individuals with ASD. Investigators have evaluated this assertion in numerous studies by testing whether the facilitator or the individual with ASD produced the communications made during FC. For example, in some evaluations, the facilitators and children were simultaneously

made during FC. For example, in some evaluations, the facilitators and children were simultaneously but separately asked questions. Sometimes the questions were the same for both the facilitators and the children; other times, they differed. When the questions were the same, the child’s answers were often correct; but when the questions were different, most answers were in response to the facilitator’s questions, not the child’s. This evidence, replicated across several hundred children with

questions, not the child’s. This evidence, replicated across several hundred children with ASD, shows that the facilitators rather than the individuals with ASD control the communication and that FC does not improve language skills (Mostert, 2001). Therefore, FC is an inappropriate intervention for individuals with ASD.

Rapid Prompting Method In the rapid prompting method (RPM), practitioners attempt to compensate for the hypothesized sensory overload and apraxia in children with ASD by continually speaking and requesting responses so that the children stay attentive (Mukhopadhyay, 2003). To encourage successful responding, they initially focus on having children observe correct responses. As the children progress, practitioners begin to ask children to point to correct responses. Subsequently, they teach

practitioners begin to ask children to point to correct responses. Subsequently, they teach children to spell answers on a keyboard or write them down, often attaching a rubber band to the children’s hands to help them hold the pen or pencil. No scientific studies have evaluated RPM.

Vision Therapy Many children with ASD have poor eye contact. Some also flap their hands or fingers in front of their eyes repeatedly, look at objects out of the corners of their eyes, and display unusually intense interest in visual stimuli such as spinning objects. Vision therapy is intended to address these problems through the use of tinted eyeglasses, prisms, or eye exercises (Kaplan, Edelson, & Seip, 1998). Tinted eyeglasses, such as Irlen lenses, are thought to reduce “perceptual stress”

& Seip, 1998). Tinted eyeglasses, such as Irlen lenses, are thought to reduce “perceptual stress” by filtering out certain colors, decreasing glare, or dimming the light. Prisms are used to displace children’s field of vision to the left, right, up, or down. Eye exercises emphasize relaxing the eyes or activities such as following a series of blinking lights, gazing at a string of objects, or working on hand–eye coordination. There are no studies on vision therapy for children with ASD. Studies

on hand–eye coordination. There are no studies on vision therapy for children with ASD. Studies of other populations such as children with learning disabilities indicate that it is likely to be ineffective (Rawstron, Burley, & Elder, 2005).

Bonding Therapies Although impaired reciprocal social interaction is a central feature of ASD, most children with ASD form attachments to their caregivers. Like typically developing children, children with ASD may become distressed upon separation, are eager to see caregivers when reunited, and stay nearer to caregivers than to unfamiliar adults (Sigman & Mundy, 1989). Nevertheless, a number of interventions are intended to facilitate attachment or bonding between individuals with ASD and

of interventions are intended to facilitate attachment or bonding between individuals with ASD and their caregivers. In holding therapy (Tinbergen & Tinbergen, 1983; Welch, 1987), the mother forcibly holds the child close to her so as to cause “the autistic defense . . . to crumble” (Welch, 1987, p. 48). Options (also called Son-Rise) offers individualized, loving attention to a child in a residential setting for most of the child’s waking hours (Kaufman, 1976). As described earlier, “gentle

setting for most of the child’s waking hours (Kaufman, 1976). As described earlier, “gentle teaching” focuses on providing unconditional support and encouragement to individuals with ASD (McGee & Gonzales, 1990). None of these therapies have been evaluated in scientific studies on children with ASD, although one study suggests that gentle teaching may be nonbeneficial for children with other developmental disabilities (Mudford, 1995). Given that attachment difficulties are not characteristic of

disabilities (Mudford, 1995). Given that attachment difficulties are not characteristic of most children with ASD, the theoretical rationale for bonding therapies is suspect.

CAM Interventions  Diets Many children with ASD have idiosyncratic eating habits: Some are very picky about what they eat, and others crave large amounts of certain foods. A few professionals suggest that these behaviors reflect a serious underlying problem, namely, a difficulty in tolerating certain substances found in various foods. They argue that eliminating these substances from children’s diets may alleviate physical discomfort, which may lead to an improvement in their behavior (Reiten,

may alleviate physical discomfort, which may lead to an improvement in their behavior (Reiten, 1987). The most common special diet for children with ASD is the gluten-free–casein-free (GfCf) diet. Gluten is an elastic protein in wheat that gives cohesiveness to dough. Casein is a protein in milk, cheese, and other dairy products. Numerous parents and professionals aver that the GfCf diet cures a few people with ASD and helps many others. The diet reportedly improves communication, social

a few people with ASD and helps many others. The diet reportedly improves communication, social interaction, and sleep patterns while reducing autistic behaviors and digestive problems such as diarrhea. These benefits are said to occur rapidly, often within a few days of starting the diet (Seroussi, 2000). Supporters of the GfCf diet propose that people with autism have a metabolic disorder that causes them to break down gluten and casein into opioids, which are peptides produced by the body

causes them to break down gluten and casein into opioids, which are peptides produced by the body and found in drugs such as morphine (Shattock, Kennedy, Rowell, & Berney, 1990). They also suggest that people with autism have leaky guts, which allow some of the opioids to escape from the digestive system and circulate to other parts of the body, including the brain (Horvath, Papadimitriou, Rabsztyn, Drachenberg, & Tildon, 1999). According to the theory, these problems create an addiction to

Drachenberg, & Tildon, 1999). According to the theory, these problems create an addiction to foods that contain gluten and casein, as evidenced by the strong cravings that people with autism often have for such foods. The cravings are thought to be symptomatic of pervasive toxic effects in the brain, thus resulting in autism. The intended purpose of the GfCf diet is to reverse the damage by detoxifying the brain.

Although some investigators have presented evidence that people with autism overproduce opioids and have leaky guts (Reichelt, Knivsberg, Nodland, & Lind, 1994), other investigators have failed to replicate these findings (Williams & Marshall, 1992). Only two small RCTs have evaluated the GfCf diet. Knivsberg, Reichelt, Hoien, and Nodland (2002) found that although the diet did not significantly improve cognitive, language, or motor skills, it may have reduced autistic behaviors such as

improve cognitive, language, or motor skills, it may have reduced autistic behaviors such as repetitive statements. Elder et al. (2006) reported that the diet did not produce significant changes for children with autism in their study. Additional study of the theoretical basis and efficacy of the GfCf diet is an important area for research (Millward, Ferriter, Calver, & Connell-Jones, 2004). Because the removal of gluten and casein may compromise a child’s nutritional intake, dietary counseling

the removal of gluten and casein may compromise a child’s nutritional intake, dietary counseling is recommended for families who place their children on the diet (Levy & Hyman, 2003).

Vitamin Therapies A few investigators assert that some children with autism require much higher doses of certain nutrients than can be obtained from any traditional diet (Rimland, 1987). According to these investigators, children with autism have a genetic or acquired medical disorder (as yet unspecified) that increases their need for specific nutrients. Research based on this hypothesis has centered on the use of a combination of vitamin B6 (pyridoxine) and magnesium. B6 is a chemical whose

on the use of a combination of vitamin B6 (pyridoxine) and magnesium. B6 is a chemical whose primary function is to aid in protein digestion; magnesium is a mineral that helps build bones, maintain nerve and muscle cells, and enhance the function of various enzymes in the body. Three small-scale RCTs indicated that B6 with magnesium is ineffective in changing behavior (Findling et al., 1997; Kuriyama et al., 2002; Tolbert, Haigler, Waits, & Dennis, 1993), but further study may be warranted (Nye

et al., 2002; Tolbert, Haigler, Waits, & Dennis, 1993), but further study may be warranted (Nye & Brice, 2005). Other common vitamin therapies include (1) dimethylglycine (DMG), which assists in the metabolism of amino acids and other substances, (2) vitamin A (often in tablets of fish oil or omega-3 fatty acids), (3) vitamin B12 (folic acid or folate), and (4) vitamin C. The theoretical basis for these vitamin therapies is unclear, and none have been evaluated in well-designed studies of

for these vitamin therapies is unclear, and none have been evaluated in well-designed studies of children with ASD.

Treatment of Infections Some researchers contend that children with ASD may have impaired immune systems (see Lawler, Croen, Grether, & van de Water, 2004, for a review), though evidence for such an impairment remains inconclusive. One small study indicated that an antibiotic, vancolycin, may increase the amount of communication initiated by children with ASD (Sandler et al., 2000), but until this finding is replicated, it is premature to recommend antibiotic treatment. Antifungal or antiyeast

finding is replicated, it is premature to recommend antibiotic treatment. Antifungal or antiyeast medications such as mycostatin (Nystatin) or fluconazole (Diflucan) are sometimes also prescribed. However, well-designed studies have not been conducted to examine the effectiveness of these medications in changing the behavior of children with ASD (Levy & Hyman, 2005). Moreover, the diagnostic tests used to identify fungal or yeast infections have not been empirically validated and must be viewed

used to identify fungal or yeast infections have not been empirically validated and must be viewed with skepticism. Intravenous injections of immunoglobulin treatments (IV-Ig) have been proposed as a way to improve immune functioning but have also not been evaluated in well-designed studies (Levy & Hyman, 2005).

Immunizations and Nonvaccination Much concern has arisen among the general public that vaccines cause autism (Kennedy, 2005), and this concern has significant public health implications, as it has apparently contributed to a reduction in vaccination rates in many countries (Fleck, 2003). Initially, it was suggested that some vaccines, particularly diphtheria–tetanus–pertusis (DTaP) and measles–mumps–rubella (MMR), may trigger out-of-control infections or immune responses, leading to brain

(MMR), may trigger out-of-control infections or immune responses, leading to brain damage and the onset of autism (Coulter, 1990). This view was largely set aside and replaced with a new hypothesis, that the MMR vaccine may cause bowel inflammation, hindering the absorption of essential vitamins and nutrients (Wakefield et al., 1998). The Wakefield et al. hypothesis generated enormous publicity and led to numerous studies evaluating the putative links among the MMR vaccine, bowel inflammation,

led to numerous studies evaluating the putative links among the MMR vaccine, bowel inflammation, and ASD. A review of 31 well-designed studies found no evidence for the proposed links (Demicheli, Jefferson, Rivetti, & Price, 2005). For instance, a Japanese city stopped administering the MMR vaccine in 1993, but the prevalence of ASD did not decrease after the vaccine’s removal (Honda, Shimzu, & Rutter, 2005). Further weakening the MMR hypothesis, 10 of the 13 authors of the Wakefield et al.

& Rutter, 2005). Further weakening the MMR hypothesis, 10 of the 13 authors of the Wakefield et al. (1998) report retracted their initial conclusion that findings in the report showed a possible connection between MMR and ASD (Murch et al., 2004). Thus, many studies have failed to find an association between the MMR vaccine and ASD (Demicheli et al., 2005). As evidence began to accumulate against a link between the MMR vaccine and ASD, another hypothesized connection between vaccines and ASD

a link between the MMR vaccine and ASD, another hypothesized connection between vaccines and ASD was advanced: Bernard, Enayati, Redwood, Roger, and Binstock (2000) and subsequent writers proposed that vaccines containing thimerosal, which is a mercury compound used as a preservative, may cause autism. In 1999, the U.S. Food and Drug Administration (FDA) mandated the removal of this substance from all childhood vaccines, including DTaP, haemophilus influenza type b (Hib), and hepatitis B. (The

all childhood vaccines, including DTaP, haemophilus influenza type b (Hib), and hepatitis B. (The MMR vaccine never contained thimerosal; some influenza vaccines continue to include trace amounts.) This action is sometimes cited as an indication that the FDA had evidence of a link between thimerosal and ASD or other conditions (Kennedy, 2005). However, studies indicate that thimerosal is not associated with ASD (Institute of Medicine, 2004). Doses of thimerosal in vaccines are excreted quickly

with ASD (Institute of Medicine, 2004). Doses of thimerosal in vaccines are excreted quickly and appear to pose little risk (Pichichero, Cernichiari, Lopreiato, & Treanor, 2002). More generally, these studies confirm that vaccines are safe and that withholding them poses much greater risk than administering them to children with or without ASD.

Secretin Secretin is a hormone that is secreted by the lining of the duodenum (part of the small intestine) and assists with food digestion. In 1998, news stories publicized a report that intravenous injections of secretin led to symptom improvement in three children with ASD (Horvath et al., 1998). Some news stories also described a child whose ASD was said to be cured by secretin. Subsequently, secretin attracted a great deal of interest from families and practitioners, and many researchers

secretin attracted a great deal of interest from families and practitioners, and many researchers began to study it. Investigators discovered that secretin receptors resided in both the gut and the brain and that secretin can cross the blood–brain barrier, indicating that it could potentially influence brain function (Levy & Hyman, 2005). However, an authoritative review identified 14 RCTs of secretin, all of which found secretin to be ineffective, and concluded, “There is no evidence that

secretin, all of which found secretin to be ineffective, and concluded, “There is no evidence that single or multiple dose intravenous secretin is effective and as such it should not currently be recommended or administered as a treatment for autism” (Williams, Wray, & Wheeler, 2005).

Chelation Chelation therapy involves administering a substance that binds to metal ions so that the metal can be excreted from the body. The substance, called the chelating agent, can be administered intravenously, intramuscularly, orally, or rectally. With the increased interest in the (unproven) hypothesis that ASD is caused by exposure to mercury, chelation has become a common intervention for children with ASD. Chelating agents that are used for children with ASD include disodium versante

children with ASD. Chelating agents that are used for children with ASD include disodium versante (Na2-EDTA), calcium disodium versante (CaNa2-EDTA), dimercaptosuccinic acid (DMSA), sodium dimercaptopropanesulfonate (DMPS), and thiamine tetrahydrofurfyl disulfide (TTFD). However, none of these agents cross the blood–brain barrier in significant amounts; thus, their theoretical basis is dubious, as there is no mechanism by which any chelating agent could reverse the brain damage associated with

there is no mechanism by which any chelating agent could reverse the brain damage associated with ASD (Levy & Hyman, 2005). Only Na2-EDTA and DMSA have been approved by the FDA to treat acute poisoning from heavy metals, and Na2-EDTA is not effective in removing mercury from the body. These and other chelating agents have significant risks of side effects. For example, in August 2005, a 5-year-old boy died as a result of chelation therapy with intravenous Na2-EDTA (Kane, 2006). Thus, although

boy died as a result of chelation therapy with intravenous Na2-EDTA (Kane, 2006). Thus, although no RCTs have evaluated any form of chelation therapy for children with ASD, and although other chelating agents may not be as dangerous as Na2-EDTA, this therapeutic approach appears implausible and unacceptably risky. It should not be used as a treatment for ASD.

Discussion Table 9.4 summarizes common controversial therapies and their intended outcomes. The preceding sections reveal that several of these therapies have undergone extensive evaluation in well-controlled studies (providing Grade I evidence, according to the criteria in Table 9.1) and have clearly been refuted: facilitated communication, secretin, and nonvaccination. Therefore, a strong recommendation can be made against implementing these treatments. Chelation, although not evaluated in

can be made against implementing these treatments. Chelation, although not evaluated in well-controlled studies, has a faulty theoretical basis and an intolerable level of risk; as such, it is also an intervention to avoid. The remaining controversial therapies have received little or no scientific testing, leaving only Grade III or Grade IV evidence, as outlined in Table 9.1. These treatments have unknown effects, and families and practitioners should be cautious about them (either deciding

have unknown effects, and families and practitioners should be cautious about them (either deciding not to implement them or monitoring them carefully). Some treatments, such as bonding therapies, are based on obsolete theories about ASD, and interventions such as some sensory–motor therapies, diets, and vitamins are based on unproven theories that may merit further research.

| Intervention Category/Intervention | Example of method                                                                                                                            | Intended outcome                                                                      |

|------------------------------------|----------------------------------------------------------------------------------------------------------------------------------------------|---------------------------------------------------------------------------------------|

| **Sensory–motor therapies**        |                                                                                                                                              |                                                                                       |

| Sensory integration therapy        | Repeated exposure to vestibular, proprioceptive, and tactile activities                                                                        | Organize sensory input and reduce anxiety associated with hypersensitivity to sensations |

| Auditory integration therapy       | Headphones to listen to filtered sound frequencies                                                                                           | Reduce sensitivity to sounds, thereby increasing social interaction and attentiveness   |

| Facilitated communication          | Physical support given by placing a practitioner’s hand on the child’s arm or hand; with support, child expresses ideas via picture board, typewriter, or computer | Overcome motor apraxia to enable communication                                      |

| Rapid prompting method             | Continuous verbal requesting in order to maintain attending behavior; children initially observe correct responses to requests, then are required to emit progressively more active responses | Compensate for sensory overload and apraxia to improve communication                |

| Vision therapy                     | Use of tinted eyeglasses, prism lenses, or eye exercises                                                                                       | Improve eye contact and diminish repetitive behaviors that involve visual stimuli such as spinning objects |

| **Bonding therapies**              |                                                                                                                                              |                                                                                       |

| Options or Son-Rise, holding therapy, gentle teaching | Giving unconditional loving attention to the child                                                                               | Increase attachment to familiar adults                                                  |

| **CAM interventions**              |                                                                                                                                              |                                                                                       |

| Diets                              | Removal of gluten and casein from the diet                                                                                                     | Heal leaky gut and detoxify the brain of opiods                                        |

| Vitamin therapies                  | Vitamin or nutritional supplements: vitamin B6 + magnesium; DMG; vitamin A; vitamin B12 (folate); vitamin C                                      | Alter neurotransmitter levels to produce global improvements in behavior              |

| Treatment of infections            | Antibiotic or antifungal treatments; IV-Ig                                                                                                     | Eliminate infectious disease, improve immune functioning                              |

| **CAM interventions (cont.)**      |                                                                                                                                              |                                                                                       |

| Nonvaccination                     | Withholding vaccines such as MMR                                                                                                               | Avoid bowel inflammation or metal toxicity to prevent ASD                        |

| Secretin                           | Intravenous injection                                                                                                                          | Alter activity of secretin receptors in gut and brain                            |

| Chelation                          | Oral or intravenous administration of a chelating agent such as DMSA or EDTA                                                                 | Remove heavy metals such as mercury from the body to restore brain functioning |

IMPLICATIONS FOR THE SCIENTIFIC COMMUNITY Ideally, the scientific community could settle controversies about treatments by providing evidence on their effectiveness or lack thereof. The reality, however, is somewhat more complicated. As detailed in the preceding section, controversial treatments are many and varied, and new ones continually emerge. Therefore, it is not feasible to evaluate all controversial treatments adequately. Even when a treatment has been studied extensively and found to

treatments adequately. Even when a treatment has been studied extensively and found to be ineffective, some families and practitioners remain steadfast in their belief that the treatment is beneficial. For example, FC, secretin, and nonvaccination still have many ardent supporters in spite of devastating evidence against them. One study revealed that, despite being informed of the negative results from a secretin study in which they participated, 69% of families remained interested in receiving

from a secretin study in which they participated, 69% of families remained interested in receiving secretin as a treatment for their children with ASD (Sandler et al., 1999). This enduring support shows that the hope for effective interventions and the appeal of pseudoscientific claims may be so strong that they override any amount of scientific data that researchers may produce. Nevertheless, the scientific community can play a constructive role in responding to controversial treatments.

the scientific community can play a constructive role in responding to controversial treatments. Research that pertains to the theoretical basis of the treatments may be especially useful. For example, until the 1980s, many bonding therapies were proposed for children with ASD (discussed by Smith, 1993). However, with the increase in research during the 1980s regarding social deficits displayed by children with ASD, interest in bonding therapies may have waned as it became apparent that bonding

children with ASD, interest in bonding therapies may have waned as it became apparent that bonding was not a primary concern for most of these children. In contrast, unusual sensory–motor behaviors, which are also a central feature of ASD, have generated much less research, and no generally accepted scientific theory accounts for these behaviors (Rogers & Ozonoff, 2005). Perhaps as a result, sensory–motor and dietary interventions continue to proliferate. Other controversial treatments,

sensory–motor and dietary interventions continue to proliferate. Other controversial treatments, particularly CAM interventions, are based in part on the belief that there is an epidemic of ASD and that recent changes in children’s environments, such as the introduction of new vaccines or exposure to toxic substances, must be responsible. Although estimates of the prevalence of ASD have certainly increased since the 1980s (Fombonne, 2003), it remains unclear whether this increase reflects an

increased since the 1980s (Fombonne, 2003), it remains unclear whether this increase reflects an actual rise in the prevalence in ASD or merely improved detection and broadened diagnostic criteria for the disorder. Extensive research is now under way to resolve this issue, and such investigations may influence the extent to which the belief in an autism epidemic continues to drive the development of new CAM interventions.

Scientific evaluations of treatments, as well as position statements by professional organizations based on these evaluations, can also have an effect on controversial treatments, albeit a limited one. For example, a search of the database Lexis/Nexis was conducted for reports on several controversial treatments in the popular media (newspapers and magazines, television, and radio); these reports were rated as having a positive, neutral, or negative stance toward a particular treatment. Figure

were rated as having a positive, neutral, or negative stance toward a particular treatment. Figure 9.1 shows reports on FC. This intervention was virtually unknown prior to 1990 but suddenly became a topic of many favorable media reports in the early 1990s. Reports often described miraculous improvements in the communications made by children with ASD. From the start, scientists expressed skepticism about the validity of FC and responded quickly by conducting single-case studies of FC involving

about the validity of FC and responded quickly by conducting single-case studies of FC involving many children with autism. By 1994, studies had unequivocally shown FC to be ineffective (Green & Shane, 1994), and professional organizations presented position statements advising against its use (American Psychological Association, 1994). As shown in Figure 9.1, positive media references to FC sharply decreased at that time, suggesting that the studies and position statements may have created

decreased at that time, suggesting that the studies and position statements may have created doubts about the intervention. However, the reports remained mostly favorable and rose in frequency again in 2004, perhaps because a film on FC was nominated for an Academy Award that year. Thus, evidence from scientific evaluations did not put an end to public interest in FC, but did appear to have an impact on media coverage (perhaps only temporarily). Figure 9.2 displays media reports on secretin,

impact on media coverage (perhaps only temporarily). Figure 9.2 displays media reports on secretin, which attracted a flurry of publicity in 1998 when an article described favorable outcomes in three children with ASD. Within weeks, the National Institutes of Health (1998) issued a call for the scientific evaluation of secretin, and scientists responded with three RCTs published in 1999, all finding secretin to be ineffective. At that time, as revealed in Figure 9.2, skeptical media reports on

secretin to be ineffective. At that time, as revealed in Figure 9.2, skeptical media reports on secretin began to surface, but positive reports also continued to flourish. As with FC, negative research findings appear to have dampened enthusiasm about this treatment, though they did not eliminate it.

FIGURE 9.1. References to facilitated communication in the popular media (1991–2005).

FIGURE 9.2. References to secretin in the popular media (1997–2005).  The influence of research findings on public opinion may be enhanced by illustrating them with case examples. For example, media reports on FC supplemented discussions of research findings with demonstrations on television that the facilitators rather than the children with ASD were controlling the communication (Palfreman, 1993). As another example, the media report of a death resulting from chelation in 2005 was followed by

As another example, the media report of a death resulting from chelation in 2005 was followed by a number of other media reports cautioning against this intervention, as shown in Figure 9.3. Many of these reports cited scientific evidence for the risks and limitations of chelation, in addition to commenting on the tragic death. In sum, although not a perfect solution, research on characteristics of ASD, scientific evaluation of controversial treatments, and position statements by professional

of ASD, scientific evaluation of controversial treatments, and position statements by professional organizations can influence public interest in a treatment, particularly if presented in an accessible format (e.g., with case reports).

FIGURE 9.3. References to chelation therapy in the popular media (1995–2005).  IMPLICATIONS FOR CLINICAL PRACTICE Given the prevalence and durability of controversial treatments for ASD, practitioners who assess and treat children with ASD can neither ignore nor dismiss such treatments. Instead, they must anticipate that the treatments will be appealing to many families. To be in a position to help families make informed decisions, practitioners can encourage families to discuss controversial

families make informed decisions, practitioners can encourage families to discuss controversial treatments by asking direct, nonjudgmental questions about treatments that families have tried or considered. Practitioners can also show an awareness of and compassion for the many understandable motives that families may have for trying unproven or even disproven approaches (Committee on Children with Disabilities, 2001). Open discussion on controversial treatments creates an opportunity for

with Disabilities, 2001). Open discussion on controversial treatments creates an opportunity for practitioners to present information on how to distinguish between scientific and pseudoscientific treatments, and to review what is known and unknown from relevant research. Research supports clear recommendations against some treatments, notably FC, secretin, and nonvaccination. It also provides reasons to be skeptical about other treatments such as AIT. However, because of the large number of

reasons to be skeptical about other treatments such as AIT. However, because of the large number of controversial treatments available, practitioners may not always be familiar with a particular treatment or have up-to-date knowledge of the research on that treatment. Under this circumstance, practitioners can express a willingness to learn about the treatment, review information that families bring, and describe criteria they would use to gauge whether the treatment appears promising. Finally,

and describe criteria they would use to gauge whether the treatment appears promising. Finally, practitioners can advocate for and, if resources are available, assist with an objective evaluation of a controversial treatment so that families can assess the treatment efficacy themselves. Guidelines for conducting this evaluation include the following (Hyman & Levy, 2000): First, make only one treatment change at a time and hold other treatments constant. Second, identify specific target

one treatment change at a time and hold other treatments constant. Second, identify specific target behaviors to be addressed by the treatment, and use objective measures to obtain a baseline of this behavior prior to treatment. Finally, monitor ongoing changes in the target behavior with objective measures obtained by raters who are blind to the treatment (e.g., a teacher who is unaware of changes in vitamin consumption rate).

In some settings, such as schools, it is often possible to go a step further and conduct single-case experiments in which a child with ASD serves as his or her own control (Smith et al., 2005). The multielement design (also called alternating treatment design) may be especially useful because it yields quick results. The design involves implementing a treatment on alternate days or in alternate sessions. During the other days or sessions, a baseline is in effect (i.e., no intervention is

sessions. During the other days or sessions, a baseline is in effect (i.e., no intervention is provided) or another treatment is provided. Kay and Vyse (2005) used this approach to evaluate the effects of prism glasses on appropriate walking by an 8-year-old boy with ASD. Data are shown in Figure 9.4 and reveal that prism glasses interfered with appropriate walking, rather than helping. As a result, the intervention was discontinued. A limitation of the alternating treatment design is that it

the intervention was discontinued. A limitation of the alternating treatment design is that it is appropriate only when treatment effects are observable within a single day or session. Thus, if an intervention is said to require multiple days or weeks to change the target behavior, other designs must be considered. A useful example is the reversal design, in which a baseline phase is followed by a treatment phase, followed by a return to the baseline phase, and so on. Each phase lasts several

a treatment phase, followed by a return to the baseline phase, and so on. Each phase lasts several sessions, days, or weeks. Figure 9.5 illustrates the use of a reversal design to evaluate the effects of an SIT intervention (brushing) for a 4-year-old boy with ASD who engaged in tantrums (screaming, crying, throwing objects, falling to the floor). During the baseline phases, Robert played with favorite toys or briefly watched videos when he had breaks in learning activities. During treatment

favorite toys or briefly watched videos when he had breaks in learning activities. During treatment phases, Robert’s mother performed the brushing at break times. Instructors, who were unaware of whether Robert was in the baseline or treatment condition, collected frequency data on tantrums during teaching sessions. Figure 9.5 shows that SIT failed to reduce this behavior (and possibly increased it). After the findings were discussed with the family, a decision was made to discontinue SIT.

FIGURE 9.4. Alternating treatment design to evaluate the effect of prism lenses on appropriate walking by an 8-year-old boy with ASD. From Kay and Vyse (2005). Copyright 2005. Reprinted by permission of Lawrence Erlbaum Associates, Inc., a division of Taylor & Francis Group.

FIGURE 9.5. Reversal design to evaluate the effect of brushing on a 4-year-old boy with ASD. From Smith, Mruzek, and Mozingo (2005). Copyright 2005. Reprinted by permission of Lawrence Erlbaum Associates, Inc., a division of Taylor & Francis Group.

CONCLUDING COMMENTS Beyond acknowledging the many reasons for the ubiquity of controversial treatments in ASD and considering how to confront them, an important next step is to increase support for developing treatments that scientists view as promising. Until the late 1990s, little funding was available for research on ASD. The funds that did become available were devoted mainly to studies of the characteristics and causes of ASD, rather than to treatment. More recently, however, private

of the characteristics and causes of ASD, rather than to treatment. More recently, however, private foundations have begun to sponsor pilot studies on innovative treatments, and federal agencies have formed multisite networks to carry out large-scale clinical trials evaluating treatments that have shown promise in preliminary investigations (Vitiello & Wagner, 2004). These initiatives are encouraging. Although treatment studies often take years to complete, and although they are not infallible,

Although treatment studies often take years to complete, and although they are not infallible, they ultimately provide the firmest foundation for enabling families and practitioners to choose from an array of appropriate treatment options and for improving outcomes achieved by children with ASD.

Supporting Families  The evaluation of a young child suspected of having autism spectrum disorder (ASD) effectively starts with the initial contact with the family. Although the primary goal of the clinicians is to gain a thorough understanding of the child’s strengths and vulnerabilities, exploration of many other factors involved in the assessment process is essential for advancing positive outcomes for children and families living with ASD. This chapter summarizes a wide range of issues that

for children and families living with ASD. This chapter summarizes a wide range of issues that need to be considered by clinicians and service providers that can potentially maximize adherence to this overarching mission. Such issues should both guide and anchor clinical efforts before, during, and after the evaluation.

SUPPORTING FAMILIES THROUGH THE DIAGNOSTIC PROCESS  The Impact of Parental Early Concerns and Experiences  Many families that have young children with ASD bring a history of experience with professionals, family, and friends that often impacts their regard for the diagnostic assessment. More specifically, most of the parents have a sense that something is just not right from very early on (Howlin & Moore, 1997; Chawarska & Volkmar, 2005), sometimes as early as a child’s birth (Wetherby,

(Howlin & Moore, 1997; Chawarska & Volkmar, 2005), sometimes as early as a child’s birth (Wetherby, Prizant, & Schuler, 2000). In ideal circumstances, these concerns are shared with family, friends, and professionals who are sensitive and supportive and can assist the family in securing a comprehensive evaluation and warranted services. Such support does not necessarily eliminate the anxiety that families experience in anticipation of an evaluation that may confirm their worst fear for their

families experience in anticipation of an evaluation that may confirm their worst fear for their child. In hindsight, however, families often express gratitude for such early assistance, as it serves as a springboard in the process of implementing early intervention services. Although the severity of their child’s difficulties may bring sadness into their lives, parents who experience appropriate early support, especially from professionals, are able to act with greater confidence on their

early support, especially from professionals, are able to act with greater confidence on their child’s behalf. Careful attention to parental concerns may prevent a buildup of feelings of anger or guilt that parents may experience because of a prolonged lag between the onset of their concerns, the validation of their feelings by professionals, and the beginning of treatment. Unfortunately, however, early parental concerns may be met with a dismissive attitude by professionals and family members.

early parental concerns may be met with a dismissive attitude by professionals and family members. Comments such as “You’re just an anxious parent” or “Boys talk later than girls” are not unusual. Although such comments may be heartfelt and well intentioned, they can potentially distract parents and derail efforts to pursue greater understanding of their child’s challenges and may delay implementation of treatment. This is especially true when the comments come from professionals (DeGiacomo &

of treatment. This is especially true when the comments come from professionals (DeGiacomo & Fombonne, 1998; Howlin & Asgharian 1999; Howlin & Moore, 1997). These comments may serve the parents’ need to believe that all is well, yet the haunting sense that something is “not quite right” never fully abates. Usually, by the time a child reaches the age of 2 or 3 years, professionals and other caretakers begin to share the parents’ concerns. Although this is likely to happen earlier, as in the

begin to share the parents’ concerns. Although this is likely to happen earlier, as in the case of children who exhibit marked speech and/or cognitive delays, by the time the child is about 3 years old the concerns are likely to be corroborated even in the absence or significant delay in the development of language (Rapin, 2005). Even though there may be a sense of relief in having one’s concerns finally validated and taken seriously, that same validation serves to exacerbate the ongoing

finally validated and taken seriously, that same validation serves to exacerbate the ongoing anxiety about “what’s wrong.” Thus, many families come to an evaluation with mixed emotions (Randall & Parker, 1999), which are sometimes accompanied by a sense of mistrust of professionals. It is very important to understand how and why this mix of emotions and the accompanying mistrust of professionals can impact the ultimate goal of advancing outcomes for children and families living with ASD. The

can impact the ultimate goal of advancing outcomes for children and families living with ASD. The emotional mix is a powerful and confusing combination of anxiety, sadness, fear, anger, guilt, and ambivalence that comes from both desiring and dreading to hear the “truth about my child.” When parental concerns have been dismissed by professionals in the past and now those concerns are suddenly and finally confirmed, parents may feel a sense of ambivalence regarding professionals’ competence. The

finally confirmed, parents may feel a sense of ambivalence regarding professionals’ competence. The risk is that the family may discount or dismiss the findings and recommendations of the evaluation and, consequently, may not pursue appropriate and necessary services for their child. In such cases, delays in implementation of appropriate treatment may impact the potential outcome, including the child’s and the family’s overall quality of life (Harris & Handleman, 2000). Thus, it is essential to

and the family’s overall quality of life (Harris & Handleman, 2000). Thus, it is essential to establish trust and build a healthy working alliance with the family from the initial contact and to maintain this throughout the evaluation process and subsequent follow-up.

The Initial Intake Process  The first encounter with the clinical team can be crucial for the formation of an alliance between the parents and those involved in the assessment of the child. It often occurs in the context of collecting basic referral information necessary to determine the scope of the difficulties, as well as a basic developmental and medical history. It is important to keep in mind that this process should also be aimed at giving the parents an opportunity to express their

mind that this process should also be aimed at giving the parents an opportunity to express their concerns and ask questions about the upcoming evaluation. This has to be done in a clinically sensitive manner, as parents often feel compelled to give very detailed accounts about their child’s medical and developmental history. In a way, the information may be more detailed than needed at this stage of the process. Yet the intake professional should listen attentively and with patience, because

of the process. Yet the intake professional should listen attentively and with patience, because this will assuredly contribute to the establishment of trust and a working alliance with the parents. In addition to attention to what parents have to say, awareness of what is not said, or more specifically, what is not asked, is quite useful. Most parents want to know what to expect during the evaluation, yet few will ask questions such as, “What instruments will be used, and what is their

evaluation, yet few will ask questions such as, “What instruments will be used, and what is their purpose?” “What happens, when, and how long will it take?” “Can I stay with my child and observe the assessment?” “Will I be able to discuss the results immediately with the assessment team?” “Can I bring along a family member or the child’s therapist?” These are very important questions, the answers to which help to reduce uncertainty, and thus anxiety. Equally important, it will help parents

to which help to reduce uncertainty, and thus anxiety. Equally important, it will help parents prepare for the evaluation so that the conditions for maximal engagement of child and family are attained. Avoidable long waiting periods, indication of preferred waiting areas, even clear instructions for parking arrangements, all facilitate success or, alternatively their absence can exacerbate anxiety in all involved and can even exacerbate or trigger maladaptive behaviors in the child. Parents can

in all involved and can even exacerbate or trigger maladaptive behaviors in the child. Parents can also help the process by bringing a favorite toy or treat to entertain their child during transitions and waiting periods. Extended family members or family friends are often very helpful in supporting a parent and the child through the assessment process, which often extends for several hours at a time. Understanding the process of assessment and familiarity with its components helps parents face

Understanding the process of assessment and familiarity with its components helps parents face this potentially complex and stressful process. Another clinical consideration for the intake process is the emotional state of the family. Understandably, most parents are greatly alarmed by the prospect of their child having a diagnosis of ASD, although many will work hard to mask their feelings. One way to explore their emotional state is to open with a statement aimed at normalizing the anxiety

way to explore their emotional state is to open with a statement aimed at normalizing the anxiety that naturally accompanies the evaluation, such as, “Most people are quite nervous about coming to the clinic. How are you doing with all of this?” This type of conversation often reveals key aspects of family coping strategies and informs the clinician about the most effective ways of communicating with the family about the assessment results and recommendations for treatment. For instance, the

with the family about the assessment results and recommendations for treatment. For instance, the conversation during the intake process may reveal that one or both parents are struggling with such high levels of anxiety or depression that their ability to concentrate may be compromised. Such parents may benefit from recommendations from the assessment team that are clear, concise, and focused on two to three priorities. This subject is elaborated on in a subsequent section of this chapter.

on two to three priorities. This subject is elaborated on in a subsequent section of this chapter. Although gathering intake information alone may be technically sufficient, clinical sensitivity and exploration of the emotional states of the parent or parents lends an opportunity to normalize feelings, establish trust, build relationships, and discover how to tailor the evaluation process, especially the discussion of the results, to best meet the needs of the family. The essential point is

the discussion of the results, to best meet the needs of the family. The essential point is that the aim of the assessment is not exclusively to learn about the child. A good assessment pursues and includes information about the family and uses that information to guide interactions. The hope is that the family will be better prepared and able to implement the recommendations and advocate effectively for appropriate services in a timely manner.

The Assessment Process  Ideally, a family arrives for a comprehensive assessment for the child already having a good understanding of the diagnostic procedures and the roles of the members of the assessment team. Nonetheless, it is often necessary and certainly helpful to recapitulate the main points, introduce the members of the team, and encourage the parents to seek clarification whenever they feel necessary. Parents are often uncertain as to how they should behave during the assessment;

feel necessary. Parents are often uncertain as to how they should behave during the assessment; therefore, it is important to facilitate a level of comfort by outlining the goals and course of each of the assessment procedures. Many parents are concerned that the standardized assessment conducted in an unfamiliar environment will skew the results and not reveal the child’s true level of skills. Such concerns often stem from the fact that the child may only rarely or inconsistently display

Such concerns often stem from the fact that the child may only rarely or inconsistently display certain skills. It is often necessary to explain that it is necessary to sample the child’s skills in unfamiliar contexts to gain a sense of the generalization of existing skills. Similarly, parents often need to be reassured that all measures will be taken (within reason) to obtain the child’s optimal performance in such situations (see Chawarska & Bearss, Chapter 3, this volume). Consideration of

performance in such situations (see Chawarska & Bearss, Chapter 3, this volume). Consideration of how consistently a skill is displayed across people and across settings and specific situations is also helpful. One should assure parents that clinicians are not only measuring the child’s skills but also learning about conditions that promote and support the child’s learning. Moreover, an explanation as to the need to ascertain both strengths and deficits, and not simply reach a categorical

as to the need to ascertain both strengths and deficits, and not simply reach a categorical diagnosis, is key in engaging parents about the ways in which the educational program should be designed and implemented. Responding to this type of parental concern affords the team members an opportunity to strengthen their credibility and alliance with the parents and helps parents to appreciate the complexity of the assessment process and their child’s needs. The formation of such an alliance is

complexity of the assessment process and their child’s needs. The formation of such an alliance is likely to have significant implications for coping and the development of effective advocacy, as described in greater detail later. Inviting a parent to join the young child in the assessment room and to observe the assessment process is essential for several reasons. First, it provides much needed comfort and a sense of familiarity for the child. Second, parental participation in the assessment

comfort and a sense of familiarity for the child. Second, parental participation in the assessment process can greatly enhance subsequent discussions, when the meaning of specific behaviors that the parents and the clinicians observed can be elucidated. However, many parents can be quite uncertain as to how active they should be during the evaluation. A clear explanation of the goals of the procedures and the anticipated parental role (e.g., as an observer and supporter or as a play partner for

and the anticipated parental role (e.g., as an observer and supporter or as a play partner for the child) usually helps to alleviate this uncertainty and reinforce the parental sense of participation in the assessment process. Sometimes parents who are eager to bring out their child’s best performance may take an active role in the assessment in ways that can be counterproductive, such as, for instance, by violating standard test administration conditions. Sensitive yet firm reminders by the

instance, by violating standard test administration conditions. Sensitive yet firm reminders by the professional may be warranted, along with an explanation of the degree of parental involvement that is typically helpful versus interfering. Eliciting a parent’s view of the child’s functioning during the assessment, as compared with other, more natural settings, is also imperative (Klin, Saulnier, Tsatsanis, & Volkmar, 2005; see also Chawarska & Bearss, Chapter 3, this volume). As mentioned

Tsatsanis, & Volkmar, 2005; see also Chawarska & Bearss, Chapter 3, this volume). As mentioned above, a discussion of differences in the child’s presentation across contexts has implications for educational programming, as well as for parents’ regard for the credibility of the evaluation and their motivation to follow through on recommendations.

Communicating Diagnostic Findings  Once the evaluation is completed, an immediate discussion with the parent or parents is preferable, as long delays may be difficult to tolerate. The discussion, often referred to as a parent conference or a feedback session, is essentially an opportunity to serve the family members and prepare them to serve their child (Klin et al., 2005). An effective feedback delivers details at the level of parental interest and probes for parents’ questions. Following a

delivers details at the level of parental interest and probes for parents’ questions. Following a detailed discussion with the clinical team regarding the child’s current level of functioning in various key areas and the diagnostic considerations, parents invariably feel compelled to project the current situation into the future by asking, “Will my child be ‘high functioning,’ ” “Will her challenges be mild or severe?” “Will she be mainstreamed by the time of kindergarten?” and, at times, “What

be mild or severe?” “Will she be mainstreamed by the time of kindergarten?” and, at times, “What about college?” The questions relating to both short- and long-term outcomes are naturally very important for both parents and professionals. These are also questions very difficult to answer on a case-by-case basis, as our ability to predict long-term outcomes for very young children with ASD is still limited (Charman et al., 2003; Chawarska, 2007; Lord et al., 2006; see also Chawarska & Bearss,

limited (Charman et al., 2003; Chawarska, 2007; Lord et al., 2006; see also Chawarska & Bearss, Chapter 3, this volume). Although some parents may find it reassuring that their child’s future has not been “sealed,” others find it difficult to accept, as they may be seeking guarantees that their child will eventually “outgrow” or “recover” from his or her social and cognitive disabilities. Providing parents with the most up-to-date information regarding the stability of the diagnosis and

Providing parents with the most up-to-date information regarding the stability of the diagnosis and predictors of outcome (Howlin, Goode, Hutton, & Rutter, 2004; see also Bishop, Luyster, Richler, & Lord, Chapter 2, and Chawarska & Bearss, Chapter 3, this volume) may help them cope with the diagnosis and make decisions about treatment options. Early characteristics that bode well for more positive outcomes are the acquisition of speech, nonverbal cognitive strength, and a good rate of progress

outcomes are the acquisition of speech, nonverbal cognitive strength, and a good rate of progress over time (Chawarska, 2007; Howlin et al., 2004). Highlighting the relative strengths of the child is critical, as this gives parents a sense of hope and provides a more complete picture of their child that extends beyond the identified delays and deficits. Hope inspires and energizes parents to take action (Marcus, Kunce, & Schopler, 2005), which, coupled with competent guidance, helps parents to

action (Marcus, Kunce, & Schopler, 2005), which, coupled with competent guidance, helps parents to pursue early, intensive, and appropriately focused interventions.

Another frequently asked question is, “What can we do to help our child now?” Effectively, this is a call for explicit guidance and instruction. Helping families to find answers to this question requires extensive training and familiarity with effective treatment approaches, as well as available resources. This question may need to be addressed on two levels. The first level involves recommendations on how to attain appropriate treatment and educational programming for the child, utilizing the

on how to attain appropriate treatment and educational programming for the child, utilizing the community resources. The second level involves a question about what the parent or parents can do themselves to facilitate the child’s development on a daily basis at home and in other settings, or ways in which they can extend their roles from parent to therapist. Both levels need to be addressed. It is typically the case that the more appropriate and structured the educational program is, the less

is typically the case that the more appropriate and structured the educational program is, the less stressful the parents are likely to be. Parents should also be encouraged to safeguard times in which they are unconditionally accepting and loving parents, not therapists, for their child. If every moment of the day is conceived as a moment for therapy, burnout can ensue. The child is unlikely to be able to please a parent in some situations of learning, which can lead to constant frustration.

be able to please a parent in some situations of learning, which can lead to constant frustration. Thus, typical parent–child interactions, with periods of silly play and “winding down,” can be very important to preserve the natural pleasures of parenting while also preserving the child’s and the family’s energy for the long periods of work and directed learning. Although it is important to be aware of the general features of ASD, it is even more important to appreciate how ASD is manifesting

of the general features of ASD, it is even more important to appreciate how ASD is manifesting in a particular child and to help parents understand and articulate their child’s specific needs (Dunlap, 1999). This impacts the parents’ efficacy as advocates when discussion on educational programming centers on identifying the child’s needs (Volkmar, Cook, Pomeroy, Realmuto, & Tanguay, 1999). To simply report that the child has ASD is insufficient. Parents need to know how their child is

To simply report that the child has ASD is insufficient. Parents need to know how their child is functioning, as compared with same-age peers, in each area of development; therefore, it behooves professionals to identify and communicate this clearly to parents (Marcus, Flagler, & Robinson, 2001). Areas of intervention to consider for young children with ASD include safety; cognition; motor skills (both fine and gross); speech, language, and communication; social interaction skills; play and

(both fine and gross); speech, language, and communication; social interaction skills; play and imagination; adaptive skills (e.g., toileting, dressing, bathing, feeding, sleeping, and coping); recreation; and the presence of interfering behaviors. Undoubtedly, this list is extensive and reflects the wide range of needs that young children with ASD may have. It is also meant to highlight the fact that current law and the existing educational guidelines indicate that an appropriate program for

that current law and the existing educational guidelines indicate that an appropriate program for children with ASD must address all areas of educational need that spring from the disability (20 U.S.C. § 1412 et seq.; National Research Council, 2001; Olley, 2005). Notably, educational need encompasses academic, developmental, and functional skills and abilities. It is essential that all of these areas be considered during the evaluation and that relevant recommendations be made for each area of

be considered during the evaluation and that relevant recommendations be made for each area of need (Lord & Risi, 2000; Mandlawitz, 2005; Tager-Flusberg, Paul, & Lord, 2005; Klin et al., 2005). This effort should be explicit, as the current educational climate continues to focus primarily on academic instruction. Fortunately, this trend is shifting to include social and adaptive skill development, but the shift is slow and uneven across the country. Therefore, feedback discussions and written

but the shift is slow and uneven across the country. Therefore, feedback discussions and written recommendations that clearly address all areas of need can give parents the awareness that these are key areas to target for services and the leverage to pursue them.

SUPPORTING PARENTS IN OBTAINING APPROPRIATE EDUCATIONAL SERVICES  Establishing Goals and Priorities  The needs of children with ASD can be so extensive and pervasive that it is essential to establish a hierarchy of priorities to be emphasized in a program. By law (20 U.S.C. § 1400 et seq.), each eligible child is entitled to an individually designed and implemented program. Professionals working with a child whose needs span many developmental areas should help the family develop a hierarchy

with a child whose needs span many developmental areas should help the family develop a hierarchy of needs that the program should focus on systematically. Safety should always be at the pinnacle of this hierarchy. Common safety issues among young children with ASD include mouthing and/or ingesting nonfood items, darting, and climbing. Self-injurious behaviors such as head banging, or aggressive behaviors such as biting or hitting, are less frequent, but when they occur they must be treated

behaviors such as biting or hitting, are less frequent, but when they occur they must be treated immediately. Interfering behaviors may also occur, which essentially include anything that interferes with a child’s ability to learn or use a skill functionally, including motor mannerisms, repetitive or restricted interests, distractibility, activity level, and so forth. Basic learning-to-learn skills also fall into the behavioral domain, and these include the ability to attend to speech, sit,

also fall into the behavioral domain, and these include the ability to attend to speech, sit, monitor the therapist’s behavior, follow directions, and engage in vocal and motor imitation. These skills prepare a child for the fundamental process of learning and are frequently and successfully addressed utilizing behaviorally based methods and techniques (Harris & Weiss, 1998; Hodgdon, 1995). Any behavior that puts the welfare of self or others at risk should be systematically studied via a

Any behavior that puts the welfare of self or others at risk should be systematically studied via a functional behavioral analysis (FBA) and addressed via positive behavioral supports (20 U.S.C. § 1415 et seq.; Powers, 2005). This is a dynamic process that involves a certain amount of trial and error. In order for the process to be successful, several elements need to be in place: (1) a competent professional to do the analysis and design the intervention, (2) ongoing monitoring of the

professional to do the analysis and design the intervention, (2) ongoing monitoring of the intervention for effectiveness, (3) flexibility and change of the intervention as needed, and (4) collaboration among all team members, including parents, for consistency in the application of the intervention (Schopler & Mesibov, 2000). This effort should not be restricted to the school setting. If the difficulties exist outside the school—that is, at home or in the community—the child’s needs should be

exist outside the school—that is, at home or in the community—the child’s needs should be addressed directly in those settings. The hierarchy of needs can vary from family to family and from child to child; however, a useful model puts safety first, interfering behaviors second, followed by a mix of efforts in the areas of communication, social interaction, adaptive skills, motor skills, and cognitive development as warranted.

The need for intervention in the areas of communication is self-evident, as impairments in this area are one of the defining features of ASD. However, it is important to help parents understand that teaching communication to young children is not equivalent to helping them to amass a large vocabulary. Intervention in this area needs to be focused on fostering an understanding of language: expressing needs, sharing interests, and commenting on experiences, as well as using nonverbal means such

needs, sharing interests, and commenting on experiences, as well as using nonverbal means such as gestures, facial expressions, and eye contact for communication (Wetherby et al., 2000; Prizant, Wetherby, & Rydell, 2000; Paul & Sutherland, 2005). For many children, the development of communication can be fostered with the use of pictures, signs, and assistive technology (Bondy & Frost, 1995). Parents need to advocate for intervention that targets the functional use of speech and language for

need to advocate for intervention that targets the functional use of speech and language for the purpose of spontaneous and flexible communication, rather than simply the acquisition of verbal labels. Written reports should reflect this distinction in the “Recommendations” section. Social impairments are another defining feature of ASD, which also warrant thoughtful intervention. Children who have some means for functional communication and imitation skills may benefit from adult instruction

some means for functional communication and imitation skills may benefit from adult instruction and facilitated support for peer interactions. Children who have not yet developed imitation skills in particular may be better served with individual adult instruction designed to develop these skills in preparation for peer interaction. The goal is to move the child toward independent and functional use of skills. The effort is informed by the child’s present level of need and the pace, level of

use of skills. The effort is informed by the child’s present level of need and the pace, level of support, and context in which the child can benefit from intervention. The typical repertoire of adaptive skills in young children includes feeding, toileting, dressing, sleeping, and personal hygiene skills. These areas can be quite challenging for children with ASD. The important point is that these are all legitimate and reasonable areas to target for intervention, by both early intervention

are all legitimate and reasonable areas to target for intervention, by both early intervention providers and preschool settings. Self-reliance and independent living skills are essential long-term goals (Klin et al., 2007). The Vineland Adaptive Behavior Scales–II (VABS-II; Sparrow, Cicchetti, & Balla, 2005) is an example of a useful tool that can be used to formally identify specific adaptive needs. Common areas of adaptive need for young children with ASD include sleep (Didde & Sigafoos,

needs. Common areas of adaptive need for young children with ASD include sleep (Didde & Sigafoos, 2001; Honomichi, Goodlin-Jones, Burnham, Gaylor, & Anders, 2002; Wiggs & Stores, 2004), feeding (Ahearn, Castine, Nault, & Green, 2001; Field, Garland, & Williams, 2003), and toileting (Volkmar & Wiesner, 2004; Wheeler, 2004). A feedback discussion, which includes identification of adaptive needs and guidance for setting treatment priorities, assists parents in making decisions and taking action to

guidance for setting treatment priorities, assists parents in making decisions and taking action to secure appropriate therapeutic and educational programming. Communication, social interaction, and adaptive skills often overlap. Although the specific teaching in each of these areas may be quite separate and different, the hope is that over time the skills will converge toward a higher level of functioning, especially in the context of peer interaction. For example, it is adaptive for a

of functioning, especially in the context of peer interaction. For example, it is adaptive for a 4-year-old to be able to kick and throw a ball. Recreation is conducive to social interaction, which, in turn, is conducive to better communication.

Providing Information about Resources  One of the questions frequently asked by parents is, “Where can I find more information about ASD that I can trust?” This question is extremely relevant, considering the proliferation of both expert and nonexpert opinions about ASD, including its causes and treatment, via the Internet and various non-peer-reviewed publications. It is often helpful to provide parents with a reading list that can both give them more information about the disorder and

provide parents with a reading list that can both give them more information about the disorder and provide them with suggestions on how to help their child in day-to-day situations. Books frequently cited as helpful by parents include Healthcare for Children on the Autism Spectrum (Volkmar & Wiesner, 2004), Children with Autism and Their Families (Powers, 2000), Right from the Start (Harris & Weiss, 1998), More Than Words (Sussman, 1999), Visual Strategies for Improving Communication (Hodgdon,

1998), More Than Words (Sussman, 1999), Visual Strategies for Improving Communication (Hodgdon, 1995), and Do–Watch–Listen–Say (Quill, 2000). There is evidence suggesting that parents who are actively engaged in the delivery of intervention enjoy a greater sense of confidence and efficacy in the parenting role, and such involvement may contribute to greater progress for the child over time (Eyberg, Edwards, Boggs, & Foote, 1998; Schopler, 2001; Webster, Stratton, Reid, & Hammond, 2001). A word

Edwards, Boggs, & Foote, 1998; Schopler, 2001; Webster, Stratton, Reid, & Hammond, 2001). A word of caution is worth repeating: For a parent who is involved in helping the child, there is a risk that the role of therapist can supersede the role of parent. This speaks to the difficulty in maintaining appropriate roles and balance in a family living with ASD, which is discussed in greater detail subsequently.

Supporting Families in Accessing Services  To a large degree, helping a young child with ASD is a matter of securing appropriate services for an intervention program. Typically, services are available via a designated state agency. Early intervention services typically span the ages of birth to 3 years. At the age of 3, children are usually transitioned from the early intervention system to the public school system. The Special Education Law, formally known as the Individuals with Disabilities

school system. The Special Education Law, formally known as the Individuals with Disabilities Education Improvement Act of 2004 (Public Law 108-446), and often referred to as IDEA-2004, mandates that these public systems provide appropriate intervention services and educational programming to those children who are deemed eligible. Specific eligibility criteria can vary from state to state, particularly in the early intervention system. Familiarity with the current governing regulations is

in the early intervention system. Familiarity with the current governing regulations is critical in order to give good counsel to parents in their pursuit of services. Some states have published guidelines for educating children with ASD that help to frame and structure the content of a program (New York State Department of Health Early Intervention Program, 1999), which can be useful for professionals in making appropriate recommendations for programming and useful for parents in negotiating

in making appropriate recommendations for programming and useful for parents in negotiating for services. If such state guidelines are not available locally, another good reference is Educating Children with Autism (National Research Council, 2001), which is written for both parents and professionals. It covers many topics, including guidelines for effective and appropriate programming for young children. Why is it important to be aware of educational guidelines and special education law?

children. Why is it important to be aware of educational guidelines and special education law? Unfortunately, in some situations, guidelines and laws are not adhered to automatically or to their full extent. Thus, as Mayerson (2004) highlights, parents inherit the often unwelcome yet necessary responsibility to become effective advocates to secure services that their child needs and is entitled to by law. Effective advocacy requires a knowledge of ASD in general, an understanding of how it is

to by law. Effective advocacy requires a knowledge of ASD in general, an understanding of how it is manifesting in a particular child, familiarity with educational guidelines (National Research Council, 2001; New York State Department of Health Early Intervention Program, 1999) and special education law, and utilization of negotiation and mediation skills (Volkmar et al., 1999). It may be daunting for parents to discover that they need to learn about and facilitate implementation of these

for parents to discover that they need to learn about and facilitate implementation of these guidelines while reeling from the news that their child has a developmental disorder. The task may at times be overwhelming, yet the need remains (Howlin & Moore, 1997). Parents who wish to become well versed in the educational guidelines and laws often find that it takes considerable time and effort to develop competence in this area, especially in the early years of adjusting to life with ASD.

to develop competence in this area, especially in the early years of adjusting to life with ASD. Professionals equipped with this knowledge are well positioned to give good counsel to families.

Supplementary Supports  Parents often pursue the option of supplementing the program offered by early intervention providers or school systems with additional services. Competent private practitioners, whether they are speech therapists, occupational therapists, physical therapists, ABA therapists, or individual or family therapists who are familiar with ASD in young children, are in high demand and short supply. An effective way to find such specialists is to network with other parents to

and short supply. An effective way to find such specialists is to network with other parents to explore who might be available in the community and how they may be helpful. The local chapter of the ASA may be a good place to network with other parents. There may also be other parent groups in the area, and some schools have special education parent–teacher associations. In addition, professionals who go to parent meetings have an opportunity to meet a broader array of families in the community,

who go to parent meetings have an opportunity to meet a broader array of families in the community, learn about their concerns and priorities, and learn more about recommended service providers. Taking time to meet providers and to gain an appreciation of their personal styles and working philosophies may also be helpful in matching them with particular families. A good fit is vital in sustaining a healthy and productive working alliance over time. When a family starts creating an overall

a healthy and productive working alliance over time. When a family starts creating an overall program that includes multiple providers, a word of caution is warranted. There is nothing inherently wrong with such a mix of professionals, and, in fact, it can be very effective, but it is imperative that all of the team members are communicating and coordinating their efforts with one another, with a view to reaching consensus about the child’s level of need and how to address it (Schopler &

with a view to reaching consensus about the child’s level of need and how to address it (Schopler & Mesibov, 2000). Without such integration of efforts, there is a strong possibility that instruction and intervention across professionals will be fragmented and possibly at odds. When this occurs, the child is at risk of confusion, which impedes learning. The more service providers involved, the greater the need for clear communication, consensus regarding effort, frequent monitoring of efficacy,

the need for clear communication, consensus regarding effort, frequent monitoring of efficacy, and flexibility to respond to changes as warranted. Coordinating the schedules of multiple personnel can be quite challenging. Although the process can and probably will be fraught with frustration, striving for it is justified by the positive impact it will have on a child’s opportunity for learning. Still, this can be more than some families can manage. If resources allow, having someone take on the

this can be more than some families can manage. If resources allow, having someone take on the role of service coordinator or education consultant to oversee the process can be very helpful. Even in cases where the child is receiving services from a single provider (e.g., public school), it is still valuable to hold regular meetings with teachers, therapists, and parents to ensure that everyone is working in ways that truly support learning. As generalization of skills is one of the most

is working in ways that truly support learning. As generalization of skills is one of the most entrenched challenges in programming for children with ASD, a lack of integrated efforts across people and settings can significantly and deleteriously impact the eventual outcome of the program. In other words, it can undermine the entire effort.

LEGAL CONSIDERATIONS  Individuals with Disabilities Education Act  The Individuals with Disabilities Education Act (IDEA, 2004) mandates the provision of appropriate services for eligible children, yet the term appropriate is not defined in the statue (Wright & Wright, 2004). Appropriate has come to be understood as that which is effective in helping the child to make tangible and measurable progress. Progress that is apparent only in a particular context—that is, the testing environment or

Progress that is apparent only in a particular context—that is, the testing environment or the classroom—does not constitute skill mastery. True progress, true skill mastery, is defined by spontaneous and flexible application of a given skill, with a variety of people and materials, across a variety of settings, and across time. Thus, each acquired skill needs to be further maintained and generalized (Klin et al., 2005). Young children with ASD require intensive and explicit instruction and

(Klin et al., 2005). Young children with ASD require intensive and explicit instruction and opportunities to practice their skills repeatedly in order to gain true mastery in natural and varied contexts. This process takes time, and there are differing opinions as to how much intervention time is necessary. The Educating Children with Autism report (National Research Council, 2001) has delved into this question extensively and determined that a reasonable and appropriate program for young

into this question extensively and determined that a reasonable and appropriate program for young children with ASD is full-time and full-year, meaning a minimum of 25–30 hours (15–20 hours for children under age 3) of instruction per week, running 12 months a year, and supplemented with additional hours of service provided for in-home and community support as warranted. Early intervention programs are typically designed to run year-round, and services are delivered in the home and community.

are typically designed to run year-round, and services are delivered in the home and community. Public school programs are typically designed to run approximately 9 months of the year and are based at a school. Many public schools offer only half-day programs until the child enters first grade. Regardless of what educational programs are currently available, recommendations addressing the child’s needs while following educational guidelines and federal law are needed. This gives parents

child’s needs while following educational guidelines and federal law are needed. This gives parents leverage to negotiate and push for appropriate, reasonable, and individualized services, regardless of existing programming offerings. The complicating factor is that what is “appropriate” varies from child to child on the basis of his or her individualized profile of needs and developmental assets, hence the importance of highly individualized assessments (see Bishop et al., Chapter 2; Chawarska

hence the importance of highly individualized assessments (see Bishop et al., Chapter 2; Chawarska & Bears, Chapter 3; and Paul, Chapter 4, this volume).

It is reasonable for parents to request a full-time program even though the school currently has only a half-day program for preschool and kindergarten. It is reasonable to request programming through the summer when the school typically closes during that time (Mandlawitz, 2005). It is also reasonable to request services for the family and the child in the home and community that extend beyond the school day. Legal statue (20 U.S.C. § 1400 et seq.) and educational guidelines (National

beyond the school day. Legal statue (20 U.S.C. § 1400 et seq.) and educational guidelines (National Research Council, 2001) support all such requests as required, given the child’s needs. Just as parents benefit from a working knowledge of special education law, so too do professionals. The statue itself and www.wrightslaw.com are useful resources. Familiarity with case law (Mandlawitz, 2002) quickly reveals the power of language and the importance of choosing words carefully. This is true in

reveals the power of language and the importance of choosing words carefully. This is true in meetings of record (e.g., school meetings), and it is certainly true for written reports. It is essential for professionals to understand the implications of language and word choice in order to support rather than undermine parents’ efforts to secure appropriate services for their child.

Free Appropriate Public Education  IDEA-2004 states that children deemed eligible for special education are entitled to a free appropriate public education (FAPE) (20 U.S.C. § 1412 et seq.); however, as mentioned previously, “appropriate” education has been left undefined. It is conventional to think of appropriate education as that which is effective in supporting and moving a child toward progress in areas of need. The importance of word choice when making educational recommendations cannot

in areas of need. The importance of word choice when making educational recommendations cannot be overstated. Public service providers are not mandated to provide the “best” services possible, and their mission is not to maximize a child’s potential (Board of Education of Hendrick Hudson Center School District v. Rowley, 1982). Rather, they are responsible for the provision of adequate services (Mandlawitz, 2005). Therefore, when wording recommendations it is imperative that words such as best,

2005). Therefore, when wording recommendations it is imperative that words such as best, excellent, optimal, and ideal are excluded. These words can be counterproductive and in the worst cases can actually undermine the credibility of the entire report. Surprisingly, the word beneficial is also problematic, as any child could potentially “benefit from” the provision of practically any intervention. Professional responsibility dictates an effort to identify the child’s needs and make reasonable

Professional responsibility dictates an effort to identify the child’s needs and make reasonable and appropriate recommendations to meet those needs with respect to one’s particular area of expertise. Educational guidelines further help to frame what is reasonable.

Individualized Education Program  All eligible children with disabilities are entitled to an individualized education program (IEP) that is designed to address their specific and individual needs (20 U.S.C. § 1414 et seq.). This points again to the importance of delineating the child’s specific needs and helping parents to articulate and prioritize these needs. It is inappropriate to place all children with ASD in the same classroom, targeting all the same goals, utilizing the same

place all children with ASD in the same classroom, targeting all the same goals, utilizing the same instructional methodology and the same supports. The key is that each child with ASD is an individual with specific needs that call for specific and individual attention. The potential benefits of early intervention and special education are compromised when instruction and intervention are not provided in ways and at levels from which a particular child can learn. Common and worrisome experience

in ways and at levels from which a particular child can learn. Common and worrisome experience shows that many children are offered the existing “autism program,” which typically includes a standard and previously determined instructional approach, classroom designation, number of hours of instruction, intervention modalities, and goals. Such educational prepackaging should raise red flags for both parents and professionals. Instead, the designing of the intervention program should be

for both parents and professionals. Instead, the designing of the intervention program should be collaborative and involve parents in the decision-making process. Decisions regarding the content and form of the program should be guided by the child’s individual needs, including the child’s profile of challenges and existing strengths.

Parents as Partners  The IEP process is designed to include parents as equal partners (20 U.S.C. § 1414 et seq.). An initial step in the process is to determine eligibility for special education. Once eligibility is established, the next step is to identify the child’s present levels of functioning in all areas of development. This serves to highlight both the child’s strengths and areas of need. Areas of need are further prioritized, and goals are established based on an understanding of

need. Areas of need are further prioritized, and goals are established based on an understanding of those needs. The goals reflect the effort to help move the child toward progress in all areas of educational need with the understanding that these needs may span academic, social, emotional, motor, and adaptive skills that are generalized across contexts and maintained over time. The goals are typically thought to cover a 1-year period, with the expectation that progress can and will be measured

thought to cover a 1-year period, with the expectation that progress can and will be measured objectively (20 U.S.C. § 1414 et seq.). Exactly how progress will be defined and measured is another factor to be discussed and agreed upon by the IEP team. Once goals and measurement are agreed upon, the next step is to determine the logistics of the program. Which professional will be providing what service? Which methodology will be utilized, in what setting, how often, and for how long? Educational

Which methodology will be utilized, in what setting, how often, and for how long? Educational guidelines and special education law do not delineate specifics at this level. Although the guidelines suggest the total number of hours of programming that are generally considered appropriate, the specific number and duration of sessions of speech therapy, occupational therapy, physical therapy, applied behavior analysis (ABA), facilitated play, and so forth, are left to the IEP team to determine.

behavior analysis (ABA), facilitated play, and so forth, are left to the IEP team to determine. Such determination can be daunting for both parents and professionals.

Professional Boundaries  Although a multidisciplinary approach to the evaluation of young children suspected of having ASD is typically recommended (Klin et al., 2005), practice limitations do not always allow for such an intensive process. In such situations, professional restraint is warranted to increase the credibility and usefulness of recommendations stemming from the evaluation. Specific recommendations limited to the parameters of one’s particular professional discipline are necessary.

limited to the parameters of one’s particular professional discipline are necessary. Recommendations that span beyond the scope of a particular discipline can be problematic and counterproductive and can lead to questioning the credibility of the evaluation and subsequent recommendations. Although recommendations should highlight areas of identified need, professional restraint regarding the impulse to designate a specific number of hours or sessions or specific modality is encouraged. Instead,

to designate a specific number of hours or sessions or specific modality is encouraged. Instead, professionals in a given area of expertise may provide recommendations for a formal evaluation to be conducted by a professional in a different field, such as speech–language, occupational, or physical therapy, to assist in determining the frequency, duration, and specific approach of sessions warranted to adequately address the child’s needs and help the child meet his or her IEP goals. Clearly, it

to adequately address the child’s needs and help the child meet his or her IEP goals. Clearly, it is preferable when a group of professionals work together as a transdisciplinary team so that a single coherent view of the child can emerge from the evaluation process. When that is not possible, coordination of different expert opinions stemming from different areas of expertise is needed, particularly insofar as the operationalization and implementation of recommendations are concerned.

particularly insofar as the operationalization and implementation of recommendations are concerned. Otherwise, parents may be left with the daunting task of having to integrate what might be, in some situations, a plethora of conflicted reports and recommendations.

Least Restrictive Environment  Another important consideration for the IEP team is placement. Placement refers to where the child goes to school: which school, which classroom, and with what level of support. IDEA-2004 (20 U.S.C. § 1412 et seq.) refers to the least restrictive environment (LRE), which is the environment closest to that of the mainstream classroom in which the particular child can benefit from instruction and make progress. The intent is to give children with disabilities

can benefit from instruction and make progress. The intent is to give children with disabilities opportunities to engage and associate with typically developing peers, rather than be automatically assigned to separate and more restricted environments. To automatically place all children with disabilities in a mainstream classroom is equally inappropriate. Placement decisions call for thoughtful consideration of the interaction of a given child’s needs with the instructional environment and how

of the interaction of a given child’s needs with the instructional environment and how that interaction can support versus undermine the child’s learning. In many ways, the spirit of the law points to the placement of a child in an educational environment whereby the child can learn and profit from instruction with the fewest restrictions regarding access to typically developing peers. The determination of appropriate placement hinges primarily on two factors: the child’s ability to actually

of appropriate placement hinges primarily on two factors: the child’s ability to actually benefit from access to typically developing peers and access to the general curriculum (Handleman & Harris, 2001) and the level of competence and ready availability of professionals instructing the child (Simpson, 2004). In order to benefit from access to typically developing peers, a given child needs to have, at a minimum, a functional communication system, imitation skills, some degree of social

to have, at a minimum, a functional communication system, imitation skills, some degree of social interest, and an ability to at least briefly stay on task with or without adult support. Such a child, with appropriate levels of support, is more likely to be able to function, learn, and make progress in the mainstream setting and may be a good candidate for such a placement. A child manifesting behaviors that are aggressive, destructive, self-injurious, or highly distracting or who lacks the

behaviors that are aggressive, destructive, self-injurious, or highly distracting or who lacks the aforementioned basic skills is questionable if not inappropriate as a candidate for the mainstream setting until these problems are addressed in a more specialized educational setting. Placement is rarely an either–or decision, but instead is often a combination of mainstream and contained environments with varying degrees of adult support. Notably, few young children with ASD are able to function

with varying degrees of adult support. Notably, few young children with ASD are able to function and learn in any school environment without at least some one-on-one adult instruction and support. Equally important, research has shown that a number of factors facilitate successful integration (Handleman & Harris, 2001) and that for many children, rather than a dichotomy of “fully mainstreamed” or “fully segregated” placement, it is a continuum of services that is needed.

Due Process  In the best of circumstances, families and service providers, be they early interventionists or school personnel, can easily and readily reach consensus regarding the child’s needs and how to meet them appropriately. Rightly, legislators have anticipated that such an outcome will not always be the case, and therefore special education law includes a course of due process for those situations that call for legal intervention to resolve differences (20 U.S.C. § 1415 et seq.). The

situations that call for legal intervention to resolve differences (20 U.S.C. § 1415 et seq.). The decision to pursue due process is a serious one, and consultation with an attorney who is well versed in special education law is advised. The decision should not be taken lightly as it will change the relationship between the family and the service providers, sometimes in ways that are irreparable (Mandlawitz, 2005). Although due process is a valuable and sometimes necessary option, such a course

2005). Although due process is a valuable and sometimes necessary option, such a course of action warrants great care and much thought. Efforts to avoid due process are worthwhile and begin with a thorough understanding of the relevant information and access to resources. Professional responsibility encompasses highlighting the child’s needs, making appropriate and comprehensive recommendations, and educating families about the disability, the guidelines, and the law in order for them to be

and educating families about the disability, the guidelines, and the law in order for them to be effective advocates for their child. Resources that can assist parents’ efforts at self-education include state guidelines (if available), Educating Children with Autism (National Research Council, 2001), as a national reference for educational guidelines, and www.wrightslaw.com for information regarding special education law and advocacy.

FAMILY IMPLICATIONS  In addition to issues related to diagnosis and treatment planning, there are a number of essential family-related issues that have a potential impact on the functioning of the entire family (Marcus et al., 2005). In many ways ASD is a family disability. Although a single child may be identified as affected with the disorder, the entire family, including extended family members, is affected by its emotional and financial fallout (Burack, Charman, Yirmiya, & Zelazo, 2001).

is affected by its emotional and financial fallout (Burack, Charman, Yirmiya, & Zelazo, 2001). How family members are affected, and to what degree, can vary significantly and can change over time. Here we focus on family implications that are typically seen in the young-child phase of family development and family functioning. As noted, it is quite common for parents of a child with ASD to have concerns early in the child’s development. They often suppress these concerns, especially if this is

early in the child’s development. They often suppress these concerns, especially if this is their first child. By the time the child reaches the age of 2, professionals may concur with the parents’ concern, especially when language development appears delayed. The parents often feel relief and confidence when their concerns are being validated; however, that same validation often stimulates anxiety. What will it mean if their child really does have a problem? Parents may also experience anger

What will it mean if their child really does have a problem? Parents may also experience anger at having been dismissed previously. Anger and anxiety can further result from a sense that precious time for early intervention may have already been lost (Marcus et al., 2005), which is compounded by a complicated grief process surrounding the loss of the idealized child and family. The cumulative stress can be unbearable and depression often ensues (Siegel, 2003; Hastings & Johnson, 2001; Olsson &

can be unbearable and depression often ensues (Siegel, 2003; Hastings & Johnson, 2001; Olsson & Hwang, 2002; Seltzer, Krauss, Orsmond, & Vestal, 2001; Tobing & Genwick, 2002). Anecdotal evidence suggests that once a child is identified as having ASD, both parents typically experience an overwhelming sadness coupled with a sense of urgency that compels them to actively pursue intensive services for their child. The day-to-day details of this pursuit are often left to one parent. Both parents

for their child. The day-to-day details of this pursuit are often left to one parent. Both parents seem to struggle with depression and anxiety, and both typically take on a task-oriented approach to coping. One parent typically becomes immersed in his or her professional work, while the other parent takes on the responsibility for pursuing, organizing, and monitoring services for their child, to the extent that many such parents give up their professional careers (Gray, 2002; Seltzer et al.,

the extent that many such parents give up their professional careers (Gray, 2002; Seltzer et al., 2001). Both parents could probably benefit from some form of therapeutic support at this point, but the inclination is to be self-sacrificing—to ignore their own needs and focus almost exclusively on the work role that they have embraced. Some parents use medication to help them cope and keep up their energy, but they seem much less likely to engage in other pursuits that may offer therapeutic

their energy, but they seem much less likely to engage in other pursuits that may offer therapeutic benefit. To do so is often regarded as selfish and frivolous when their child’s needs are so grave and so immediate and the magnitude of financial responsibilities related to, for instance, supplementing the child’s treatment, becomes apparent. Unfortunately, this dynamic has the potential to set down roots for unbalanced individual and family functioning in the future.

Imbalance  Imbalance is often the primary focal point in maladaptive or disrupted family functioning. It is also the most difficult area for therapeutic work. Regrettably, families often do not seek help until they are at the point of breakdown. Therefore, it behooves professionals to alert families to this inclination and help them to monitor for and identify signs that can essentially give them permission and impetus to help themselves. Interestingly, many parents are quite defensive about a

permission and impetus to help themselves. Interestingly, many parents are quite defensive about a direct recommendation for therapy for themselves. A typical response is, “You’d be going crazy too if you were going through what we are.” Often a more helpful approach is to educate parents on the physical and cognitive signs that warrant clinical concern in general: change in appetite, weight, sleeping pattern, or sexual drive and presence of obsessive or persisting thoughts. Seemingly, parents

pattern, or sexual drive and presence of obsessive or persisting thoughts. Seemingly, parents find it more logical and more acceptable to think about these factors versus emotional factors as triggers for self-help. This may be especially true when the focus is on keeping themselves healthy so they can continue to have the energy and clear thinking necessary to help their child.

Not surprisingly, living with ASD and all of its ramifications puts enormous stress on families. Perhaps it is true of all disabilities, but it is certainly true that ASD is a family disability in that it impacts all family members (Powers, 2000), including extended family. The risks to the family include isolation, role imbalance, depression, anxiety, grief, guilt, blaming, and extreme self-sacrifice. Additional risks include financial hardship due to costs of supplementary services and/or

Additional risks include financial hardship due to costs of supplementary services and/or due process expenses, and chronic sleep deprivation in cases involving children with disrupted or difficult sleeping patterns. Some families experience isolation from their communities because of the child’s behavior being idiosyncratic, unsafe, or disruptive to the extent that it becomes too difficult or too embarrassing to go out in public (Gray, 2002; Avdi, Griffin, & Brough, 2000). Isolation can also

embarrassing to go out in public (Gray, 2002; Avdi, Griffin, & Brough, 2000). Isolation can also occur within the family. This tends to happen when parents are unable to agree on the needs of the child or how to meet those needs. In such instances communication between the parents diminishes along with emotional support, with one parent becoming overinvolved with professional work life, spending less and less time at home and being more withdrawn while at home. The other parent can become

less and less time at home and being more withdrawn while at home. The other parent can become hyperfocused on the child with ASD, with the thought that everyone else in the family is able to function on his or her own. This seems to be driven by a parent’s anxiety regarding the perceived ever-closing window for early intervention. It also seems to be driven by a deep-seated sense of guilt for somehow causing the ASD and/or a sense of guilt for not trusting his or her initial intuition of

somehow causing the ASD and/or a sense of guilt for not trusting his or her initial intuition of concern and not being more proactive in getting help for the child at the first moment of concern. Although these self-imposed pressures may seem irrational to an outside party, the stress is very real and can be quite debilitating for a family caught in this dynamic, all of which is further complicated in single-parent families. The unrelenting effort, coupled with emotional weight, quickly becomes

in single-parent families. The unrelenting effort, coupled with emotional weight, quickly becomes quite tiresome, and relations with spouse, other children, extended family members, and friends are easily strained if not neglected. The strains are particularly worrisome when the child with ASD makes limited progress. For, despite the best efforts of the family and service providers, some children unfortunately do not make much progress (Mundy, 2003). In such situations it is not unusual for the

unfortunately do not make much progress (Mundy, 2003). In such situations it is not unusual for the family to pursue less conventional therapies and practices (Marcus et al., 2005; Rapin, 2005; see also Smith & Wick, Chapter 9, this volume). Such is a time to help families think through options carefully and weigh hoped-for benefits against some very real risks that may have the potential to do harm.

Siblings and Extended Family  Siblings of a child with ASD often find their emotional needs somewhat neglected within their primary family (Harris & Glasberg, 1994). They tend to compensate for this experience by striving for excellence in all they do. Siblings are typically more mature than their same-aged peers and often take on responsibilities far beyond what would be expected from other children their age (Fishman, Wolf, Ellison, & Freeman, 2000; Konidaris, 2005). Typically, the most

children their age (Fishman, Wolf, Ellison, & Freeman, 2000; Konidaris, 2005). Typically, the most vulnerable sibling is the oldest female, who is most at risk for becoming quite parentified at a very early age. On the surface, siblings appear quite well adjusted and competent. Unfortunately, the heightened sense of responsibility and effort to excel may at times be driven by a very basic need for recognition, acceptance, and validation. Value as a person becomes associated with tasks and

for recognition, acceptance, and validation. Value as a person becomes associated with tasks and accomplishments versus simply being a child and a member of a family. External sources of validation (e.g., school) may become more reliable, and a sibling’s natural sense of value within the family may be at risk for being diminished. The need for validation within the family remains a primary, yet in some instances an inadequately met, need. Typically, the sibling facing this situation can strive

some instances an inadequately met, need. Typically, the sibling facing this situation can strive for years to be good enough, to be a great helper, to not be in the way, and to be content with a perceived secondary status in the family. Sadly, this effort becomes quite difficult for many to sustain over time. Preadolescence seems to be associated with emerging mental health concerns, particularly depression, which if left unchecked, may result in serious and potentially life-long challenges.

depression, which if left unchecked, may result in serious and potentially life-long challenges. Alerting families to the risks for siblings and guiding them to healthy family functioning can be invaluable. Lobato and Kao (2002) highlight evidence suggesting that participation in a sibling support group may also be beneficial.

Extended family members, especially grandparents, tend to follow one of several paths: (1) awareness of problems and supportive of needs, (2) dismissal of problems, often stemming from a lack of understanding of ASD and/or an inability to accept its existence within their family, and (3) an attempt to “take over” the situation, pushing ahead with a plan without the full engagement of the child’s actual parents. Dismissal of problems can undermine the parents’ efforts to secure and maintain

actual parents. Dismissal of problems can undermine the parents’ efforts to secure and maintain appropriate services for the child. It also serves to diminish and invalidate the stress that the family encounters. At its worst, dismissal breeds irreparable contention and conflict among family members and results in a cut-off of relations. Sharpley, Bitsika, and Ephrimidis (1997) point out that time and effort extended to educate and inform in such circumstances serves to increase understanding,

and effort extended to educate and inform in such circumstances serves to increase understanding, which in turn can decrease stress on families. And if the actual parents are pushed aside at this critical juncture, this may lead to their dependence on others and lack of active voice in a process that requires their decisive input. This often leads to a sense of powerlessness and ineffectual participation, thus delaying if not undermining altogether their becoming effective advocates for their

thus delaying if not undermining altogether their becoming effective advocates for their children. From the standpoint of clinicians, this can be very confusing, as responsibility lies first with parents, and such confusion can lead to cross purposes.

Protective or Resilience Factors  There are many protective factors for family functioning that deserve to be cultivated and nurtured. A strong and committed partnership that supports the parental alliance as well as the marital bond is essential. A full understanding of the child’s needs and a shared focus on how to meet those needs is also essential. Having practical knowledge of educational guidelines, special education law, and advocacy skills certainly assists in meeting the child’s

guidelines, special education law, and advocacy skills certainly assists in meeting the child’s needs. And having an appreciation for the roles of the various family members and meeting their needs adequately can contribute to balanced and adaptive functioning of the entire family over time. A network of understanding and available friends can be protective, not only for emotional support but also for very practical needs such as child care and respite. Financial resources give families options

for very practical needs such as child care and respite. Financial resources give families options regarding supplementary services and supports, which may contribute to a positive outcome for both child and family. The child’s steady progress is also protective, as it gives parents assurance that their efforts are effective; thus, they are less distracted by the often tempting yet questionable alternative therapies. Finally, and perhaps most important, is a sense of hope. When family members

alternative therapies. Finally, and perhaps most important, is a sense of hope. When family members perceive that they can be effective and that their child can make progress, they are energized by a strong sense of hope for the future, which fuels their motivation to continue their diligent work in service of the needs they face. Hope is powerful and necessary, and its cultivation is crucial.

CONCLUSIONS  When pondering the complexities of ASD, it is important to keep in mind that this essentially social disability can have a powerful and disturbing impact on the entire family. Restoring and maintaining balance within the family often becomes the focal point of therapeutic effort, which helps families get past feelings of blame and guilt, or the compulsion to erase all traces of ASD, thus enabling them to set healthy priorities for all family members while finding ways to accept

thus enabling them to set healthy priorities for all family members while finding ways to accept and even embrace a life with ASD. Such work is very challenging, yet so worthy of effort. An inspiring aspect of the work is the opportunity and privilege of witnessing families overcome very real and very difficult hurdles and come to view ASD as a “blessing in disguise” and an important factor in their sense of calling in life. Living with ASD opens many parents to self-discovery and personal

their sense of calling in life. Living with ASD opens many parents to self-discovery and personal growth that may not have happened otherwise. Countless numbers of families have noted that living with ASD has taught them to celebrate the little things in life, to not take anything for granted, to grow personally, to be brave, to be humble, and to be grateful. Many have an intense appreciation of the value and strength of family and actively reach out and support the health and advancement of

the value and strength of family and actively reach out and support the health and advancement of the wider community of families living with ASD. Professionals working in the field of ASD have an important mission to help families cultivate hope by highlighting their strengths and the strengths of their children, and by encouraging habits that further strengthen their efficacy as loving parents and advocates for their children. Good practice alerts families to the potential risks that may be

and advocates for their children. Good practice alerts families to the potential risks that may be inherent in living with ASD and serves as a pivotal element in facilitating positive outcomes for children and families living with autism spectrum disorder.

History and Purpose of Assessment and Diagnosis of Autism Hilary L. Adams and Johnny L. Matson  Introduction to History and Purpose of Assessment and Diagnosis Assessment is a broad term that encompasses evaluation of a variety of types. When considering assessment of autism, diagnostic assessment is typically the first to come to mind. However, assessment of individuals with autism frequently extends beyond diagnosis; professionals may assess challenging behavior (e.g., self-injurious behavior,

beyond diagnosis; professionals may assess challenging behavior (e.g., self-injurious behavior, aggression), intellectual functioning, adaptive skills, etc. among this population. Nonetheless, the current chapter covers the history of the assessment and diagnosis of autism in particular. In later chapters, authors discuss the other aforementioned types of assessment, as well as current diagnostic criteria and assessment practices. The diagnosis of autism spectrum disorders (ASD) has changed

criteria and assessment practices. The diagnosis of autism spectrum disorders (ASD) has changed substantially since its inception, with screening, assessment, and monitoring techniques continuing to evolve. In the recent past, children with autism were frequently identified and diagnosed when they entered school. This practice is changing rapidly for a variety of reasons: increased autism awareness, widespread screening requirements, recognition of the importance of early intervention, etc.

widespread screening requirements, recognition of the importance of early intervention, etc. (Fountain, King, & Bearman, 2011). At present, reliable identification is possible as early as infancy (Dover & Le Couteur, 2007; Klaiman, Fernandez- Carriba, Hall, & Saulnier, 2015; Zwaigenbaum, Bryson, & Garon, 2013). Reliable diagnosis at this age is crucial for access to early intervention, which leads to greatest developmental gains and best prognosis for most individuals (Bryson, Rogers, &

leads to greatest developmental gains and best prognosis for most individuals (Bryson, Rogers, & Fombonne, 2003). Early diagnosis is also reportedly responsible for a variety of other positive results, including lessening family stress, decreasing societal costs, and earlier recognition of medical, developmental, and psychiatric conditions that may co-occur with core symptoms of autism (Dover & Le Couteur, 2007; Klaiman et al., 2015).

Despite the ability to diagnose reliably in infants, the average age of diagnosis in the United States remains later (e.g., average of 38 months in a study sampled by Valicenti-McDermott, Hottinger, Seijo, & Shulman, 2012). This trend may be due to the finding that early diagnosis is not uniform across groups. That is, variables such as race, access to relevant healthcare, and severity of symptoms influence the age of the individual when he or she is diagnosed (Wiggins, Baio, & Rice, 2006).

influence the age of the individual when he or she is diagnosed (Wiggins, Baio, & Rice, 2006). Further, being male, having an IQ below 70, and experiencing developmental regression have all been associated with earlier diagnosis (Shattuck et al., 2009). With increased focus on screening, which allows for the determination of need for further, comprehensive assessment, diagnosis is likely to continue to occur earlier in development. Further, recent efforts have included the goal of determining

to occur earlier in development. Further, recent efforts have included the goal of determining “at-risk” symptomatology (i.e., signs even earlier in life that autism may develop later) (Klaiman et al., 2015), which has the potential to allow intervention to start before further symptoms develop.

Kanner’s Autism Although Leo Kanner, an American child psychiatrist, is commonly credited with “discovering” autism in the 1940s, individuals who exhibited symptoms of ASD had long been recognized as evincing atypical development. Before Kanner’s Autistic Disturbances of Affective Contact in 1943, such persons were frequently considered to have an emotional disturbance or intellectual disability (Wing, 1997). The symptoms he identified among his patients represented the core domains we

(Wing, 1997). The symptoms he identified among his patients represented the core domains we recognize today as characteristic of autism: communication deficits, difficulty with social interaction and forming relationships, and the presence of restricted and repetitive behavior and interests. He used observations of behavioral symptoms as well as parent- reported family, medical, and developmental history to make his classifications. His method was based on clinical presentation and predominantly

history to make his classifications. His method was based on clinical presentation and predominantly atheoretical, a departure from the popular psychoanalytic thinking of his era (Blacher & Christensen, 2011). Kanner coined the term “early infantile autism” to describe the constellation of symptoms exhibited by the children he studied (Kanner, 1951). With his publication of detailed case studies (Kanner, 1943), he was considered the first to recognize the denoted behavioral phenotype as disparate

1943), he was considered the first to recognize the denoted behavioral phenotype as disparate from childhood psychosis (Blacher & Christensen, 2011). Nevertheless, his first work on the subject did not specify diagnostic criteria in 1956, Kanner and Leon Eisenberger delineated specific symptoms required for classification (Eisenberger & Kanner, 1956). This development of diagnostic criteria based on observations of child clients was unusual for the time period, when criteria for disorders among

on observations of child clients was unusual for the time period, when criteria for disorders among children were simply modifications of criteria for syndromes seen in adults (Rutter & Schopler, 1988).

Deviations in Conceptualizations and Criteria In the late 1950s and early 1960s, diagnostic criteria and terminology for autism remained controversial. From Kanner’s original observations, other diagnostic criteria were created but with notable changes. For instance, Polan and Spencer (1959) published the 30-item Checklist of Symptoms of Early Infantile Autism, which included language distortion, social withdrawal, lack of integration in activities, obsessiveness and nervousness, and family

social withdrawal, lack of integration in activities, obsessiveness and nervousness, and family characteristics. These criteria aimed to evaluate the “perceptual apparatus” and “psychogenic factors related to deviant styles of interpersonal relatedness” (Ward, 1970). In 1958, a “Social Psychiatry Research Unit” was opened due to the British Government’s impending enactment of the Mental Health Act. There, Hans Eysenck and other influential scientists led the charge for experimental psychology,

There, Hans Eysenck and other influential scientists led the charge for experimental psychology, including the use of statistical analyses and behavioral measures. Eysenck was a strong proponent of direct observation rather than psychoanalytic theory, arguing against Freudian speculative impressions (Evans, 2013). In particular, the psychoanalytic theory of the time suggested that autism was a “reaction to an overwhelming inner or outer assault at a vulnerable developmental stage” (Garcia &

“reaction to an overwhelming inner or outer assault at a vulnerable developmental stage” (Garcia & Sarvis, 1964, p. 530). This shift in thinking toward an empirical- based study of psychology helped influence Mildred Creak, a British child psychological professional who studied psychopathology in infancy, to unite prominent members of the field to identify specific features of childhood schizophrenia. Her purpose in forming the work group was to help establish quantitative, reliable research of

Her purpose in forming the work group was to help establish quantitative, reliable research of childhood psychopathology, which included creating criteria that all psychiatrists could agree on in order to enable population- based studies (Evans, 2013). The work group’s efforts resulted in a set of nine key features: impairment of emotional relationships with people; unawareness of personal identity; preoccupation with particular objects; resistance to environmental change; abnormal perceptual

preoccupation with particular objects; resistance to environmental change; abnormal perceptual experience; acute, excessive, illogical anxiety; a lack of or delay in language ability; distortion in motility patterns; and impaired cognitive function that sometimes occurs with savant skills (Creak, 1961). Another example of criteria appearing in that era was that by Schain and Yannet (1960). Their criteria for autism included children who displayed “an extreme preoccupation with self and

Their criteria for autism included children who displayed “an extreme preoccupation with self and unrelatedness to people” and who thus failed to develop relationships with caregivers as expected by age 2 years (p. 561). These authors noted that they might have included cases that other professionals would not consider to have infantile autism but that they had required Kanner’s “common denominator” of difficulty with social relationships. Their criteria, therefore, did not include display of

of difficulty with social relationships. Their criteria, therefore, did not include display of insistence on sameness or similar symptomatology included in Kanner’s original description. Unlike the others originating at the time, the criteria authored by Ornitz and Ritvo (1968) emphasized perception issues, considering them fundamental to the other problems in autism. Their criteria encompassed symptoms in the areas of perceptual integration, motility patterns, capacity to relate, language, and

in the areas of perceptual integration, motility patterns, capacity to relate, language, and developmental rate. That same year, an additional conceptualization was published by Rendle-Short and Clancy. Their “screening test” included 14 symptoms, of which a child needed to exhibit half or more per caregiver report, that the authors considered most representative of the essential characteristics of autism (Rendle-Short & Clancy, 1968). These symptoms were: difficulty engaging with other

of autism (Rendle-Short & Clancy, 1968). These symptoms were: difficulty engaging with other children, acts as though deaf, resists learning, no fear of real dangers, resists routine change, indicates needs by gestures, inappropriate laughing, not cuddly, marked physical overactivity, no eye contact, inappropriate attachment to objects, spins objects, sustained odd play, and standoffish manner. With the continual development of varying definitions, the boundaries of the disorder remained unclear.

the continual development of varying definitions, the boundaries of the disorder remained unclear. Despite a lack of agreement in the field as to what exactly constituted autism, Dr. Victor Lotter published the first paper to give the results of an epidemiological study of autism among a population of children of varying intellectual function in 1966. To meet his criteria and be considered to have autism, a participant had to have a profound lack of affective contact and elaborate repetitive,

autism, a participant had to have a profound lack of affective contact and elaborate repetitive, ritualistic behavior, whereas early age of onset was not included (Feinstein, 2010). Results suggested a prevalence rate of 4.5 per 10,000 (Lotter, 1966).

Beginnings of Diagnostic Assessment of Autism In the 1960s, the practice of the family physician completing screening for developmental issues including autism was already in place in a less formal variation than today (Fotheringham, 1969). At that time, the physician might compare the child’s development to established milestones (e.g., motor, communication) and gather more in- depth developmental history from caregivers (e.g., age at first concern, significant biological or social events that

history from caregivers (e.g., age at first concern, significant biological or social events that affected functioning). If the child was school-aged, a sampling of schoolwork or a brief achievement test may be administered. Nonetheless, in Wing and Wing’s “Early Childhood Autism” (1976), contributor Dr. P. H. Connell noted the deficiency of adequate comprehensive assessment measures for diagnosis, not just screening, of autism. The aforementioned Checklist of Symptoms of Early Infantile Autism by

just screening, of autism. The aforementioned Checklist of Symptoms of Early Infantile Autism by Polan and Spencer (1959) was considered one of the pioneers of standardized autism assessment. This measure required that each respondent endorses or denies the presence of a specific list of symptoms for the child being evaluated (Rotatori, Obiakor, & Bakken, 2011). In 1964, Rimland, inspired by the aforementioned checklist, attempted to translate Kanner’s definition into an empirical rating scale to

checklist, attempted to translate Kanner’s definition into an empirical rating scale to identify early infantile autism in children up to age 7 years. The Diagnostic Form E - 1 (Rimland, 1964b) was a parent-report measure that included 76 questions inquiring about birth history and onset and characteristics of symptoms. The form was subsequently revised to reflect the need for information about children before age 5 years. Thus, the Diagnostic Checklist for Behavior - Disturbed Children, Form E -

before age 5 years. Thus, the Diagnostic Checklist for Behavior - Disturbed Children, Form E - 2 (Rimland, 1964a) included questions about early development (i.e., from birth through age 5 years). The form included characteristics of autism described by Kanner and symptoms of childhood schizophrenia described by experts in that field. According to Rimland, 31 children had been diagnosed by Kanner prior to their completion of Form E-2, and the E-2 scores correlated strongly with these diagnoses

prior to their completion of Form E-2, and the E-2 scores correlated strongly with these diagnoses (Rimland, 1971). In addition, he found that the parent-reported presence of “autistic speech symptoms” among children with and without classification of early infantile autism, indicating language issues alone, was insufficient for an autism diagnosis (Rimland, 1971). Although reliability of parent- report measures had been questioned in terms of reliability and accuracy, Rimland argued that

report measures had been questioned in terms of reliability and accuracy, Rimland argued that diagnosis should require retrospective information, making caregiver report a necessity (1971). To further justify his use of parent report rather than direct observation, he also suggested that behaviors may differ within and outside of the diagnostic session (Rimland, 1971). Soon after the publication of Rimland’s checklist, Ruttenberg and colleagues published the Behavior Rating Instrument for

of Rimland’s checklist, Ruttenberg and colleagues published the Behavior Rating Instrument for Autistic and Atypical Children (Ruttenberg, Dratman, Fraknoi, & Wenar, 1966). Reportedly this measure was unable to accurately differentiate between autism and intellectual disability (Parks, 1983). Despite this, teachers and therapists found the measure useful for goal formulation and in predicting future development among children exhibiting atypical development (Feinstein, 2010). Both Creak’s

future development among children exhibiting atypical development (Feinstein, 2010). Both Creak’s (1961) criteria and Rimland’s (1964b) original checklist lacked consideration of symptoms among very young children. To correct for this exclusion, Reichler and Schopler developed a 15-scale rating system, initially named the Childhood Psychosis Rating Scale (CPRS), in 1971. Their aim was to incorporate Kanner’s original description, less common characteristics of autism noted by Creak, and

Kanner’s original description, less common characteristics of autism noted by Creak, and symptoms of autism common in younger children. The observational scale required each of the 15 included domains to be considered in terms of atypicality, frequency, and duration and given a corresponding rating from 1, which represented behavior within normal limits, to 4, which represented severely abnormal behavior (Schopler, Reichler, DeVellis, & Daly, 1980). This measure was later renamed the Childhood

behavior (Schopler, Reichler, DeVellis, & Daly, 1980). This measure was later renamed the Childhood Autism Rating Scale (CARS). An updated version of the CARS is commonly used for assessment at present.

Clarifying Distinct Definitions Kanner’s purpose for his descriptions of autism as a syndrome was to recognize a constellation of certain behaviors that differed from symptoms of other mental health issues (Rutter & Schopler, 2012). To clarify the definition, work was needed to establish which symptoms could potentially occur in autism and which were characteristic of autism and therefore requisite behaviors for such a classification. Renowned psychiatrist Sir Michael Rutter was extremely

behaviors for such a classification. Renowned psychiatrist Sir Michael Rutter was extremely influential in this endeavor. He found three primary types of symptoms evinced by almost all children with autism and that occurred much less frequently among children with other disorders. These symptoms confirmed Kanner’s work and are the same as those core domains we recognize in the field today: difficulty developing and maintaining social relationships, problems with language development and use, and

developing and maintaining social relationships, problems with language development and use, and ritualistic or compulsive behavior (Rutter, 1970, 1971). Additional symptoms that occurred frequently among children identified as having autism included stereotypy (e.g., repetitive motor movements), self-injury, poor attention span, and delayed bowel control (Rutter, 1970, 1971). Most researchers in Britain, Australia, Canada, and the United States supported autism and childhood schizophrenia as

Britain, Australia, Canada, and the United States supported autism and childhood schizophrenia as discrete syndromes by the 1970s (Green et al., 1984). In 1971, DeMyer and colleagues made an empirical comparison of five diagnostic systems for differential diagnosis between the disorders. The diagnostic systems they used included Polan and Spencer (1959), Rimland (1964b), Lotter (1966), Rendle-Short and Clancy (1968), and Creak/British Working Party (1964). The authors administered all of the

and Clancy (1968), and Creak/British Working Party (1964). The authors administered all of the checklists to each of the 44 participants. Results indicated overlap of only 35 % across all five systems, reflecting the great disparity in definitions of schizophrenia and autism that existed in that era despite the recognition that the disorders were distinct. Furthermore, the authors noted that all of the checklists lacked rigorous validity studies at the time the study was conducted and, as such,

the checklists lacked rigorous validity studies at the time the study was conducted and, as such, could only serve as screening instruments of relatively equal value (DeMyer, Churchill, Pontius, & Gilkey, 1971). That is, any one of the checklists studied could differentiate early schizophrenic and autistic children from nonpsychotic children, but not necessarily to differentiate within the “psychotic” group. To excuse the low amount of overlap, DeMyer and colleagues pointed out that

the “psychotic” group. To excuse the low amount of overlap, DeMyer and colleagues pointed out that professionals in close collaboration (e.g., working at the same facility) are much more likely to experience agreement on diagnosis than those experts who do not engage in constant feedback and comparison of diagnoses, despite the use of standardized or structured assessment instruments. In the late 1970s, two definitions of autism that were evidence based rather than strictly theoretical were most

1970s, two definitions of autism that were evidence based rather than strictly theoretical were most prominent (i.e., those by Rutter (1978) and Ritvo and Freeman (1978)). The definitions were similar in that they both included impairments in social development, problems with language and cognitive function, and early onset of symptoms. Additionally, both recognized that although these core symptoms were required, variation among individuals was extensive (Schopler et al., 1980). However, whereas

were required, variation among individuals was extensive (Schopler et al., 1980). However, whereas Rutter (1978) included behavioral rigidity (e.g., insistence on sameness) and stereotyped behavior (e.g., play), Ritvo and Freeman (1978) highlighted sensory issues and added disturbances in developmental rates or sequences. Rutter recognized and noted several flaws in his 1987 formulation; his four diagnostic criteria did not include consideration of distinct subtypes of autism, nor how to

four diagnostic criteria did not include consideration of distinct subtypes of autism, nor how to classify individuals who exhibited only some of the features he delineated (Feinstein, 2010).

Further Progress for Assessment and Toward Consensus on Definition Recognizing the need for objective diagnostic criteria and normative behavioral data that would allow for accurate comparisons across individuals, Freeman, Ritvo, Guthrie, Schroth, and Ball (1978) developed a systematic way to code behaviors among children with developmental disabilities as well as their typically developing peers. Their measure was named the Behavior Observation Scale. In their factor analysis of the measure,

Their measure was named the Behavior Observation Scale. In their factor analysis of the measure, the authors found that the group with autism was best characterized by symptoms of inappropriate interaction with people and objects. This was in contrast to their group of individuals with intellectual disability, who exhibited solitary behaviors (Freeman, Schroth, Ritvo, Guthrie, & Wake, 1980). Later, they further differentiated between high- and low-functioning autism; “relation to examiner” best

they further differentiated between high- and low-functioning autism; “relation to examiner” best differentiated the children with low-functioning autism, whereas “solitary stereotypic” and language behavior best differentiated the children with high-functioning autism (Freeman, Ritvo, & Schroth, 1984). In 1980, the authors of the CARS compared their measure to the aforementioned Rimland checklist and the existing definitions to evaluate correspondence among these options (Schopler et al.,

and the existing definitions to evaluate correspondence among these options (Schopler et al., 1980). They found that their classifications, based on behavioral observations, differed substantially from those that used the Rimland checklist, which were based on parent report. Their study also indicated significant overlap in the Rutter and Rivto and Freeman criteria, with those individuals meeting both criteria evincing higher scores on the CARS (i.e., more likely to be in the severely autistic

both criteria evincing higher scores on the CARS (i.e., more likely to be in the severely autistic range according to the measure). Schopler and colleagues (1980) emphasized that although the CARS was helpful for classification purposes and to provide a “descriptive summary of a child’s pathological behavior” (p. 102), the measure was not intended to replace the gathering of information from multiple sources (e.g., developmental history, behavior across settings). The same year, the third

multiple sources (e.g., developmental history, behavior across settings). The same year, the third edition of the DSM was released (1980, American Psychiatric Association). In DSM-III, childhood schizophrenia was excluded, and “infantile autism” was included for the first time (DSM-III, American Psychiatric Association). Infantile autism was included in the pervasive developmental disorder category and was clearly distinguished from childhood-onset schizophrenia. These criteria were based on

and was clearly distinguished from childhood-onset schizophrenia. These criteria were based on Kanner’s original descriptions (Kanner, 1943), his more specific delineation with Eisenberger (Eisenberger & Kanner, 1956), and Rutter’s later description of behavioral manifestations of Kanner’s proposed core symptoms (Rutter, 1978). Empirical comparisons supported the differentiation between autism and schizophrenia. For instance, in their comparison of DSM-III- diagnosed children with schizophrenic

schizophrenia. For instance, in their comparison of DSM-III- diagnosed children with schizophrenic disorder versus DSM-III-diagnosed children with infantile autism, Green and colleagues (1984) found that the disorders differed in terms of age of onset, behavioral symptom profile, intellectual functioning, pregnancy and delivery complications, and socioeconomic status (Green et al., 1984). Further, the groups remained distinguishable as the children developed, despite some overlap in behavioral

the groups remained distinguishable as the children developed, despite some overlap in behavioral profiles (Green et al., 1984).

In the late 1980s, Rutter’s (1978) four criteria and Ritvo and Freeman’s (1978) criteria were most commonly used, but there was still difficulty formulating criteria that would delineate a clinically homogeneous group (Fein, Pennington, Markowitz, Braverman, & Waterhouse, 1986). As the field worked on a neurophysiological model of the disorder, some researchers suggested autism was a neurological disorder that primarily affected social and emotional development (Fein et al., 1986). Nevertheless,

that primarily affected social and emotional development (Fein et al., 1986). Nevertheless, focus remained on behavioral observations and caregiver- reported developmental history, with standardized ways of measuring both emerging out of necessity to compare across populations. Behavior checklists were fairly common (e.g., Behavior Rating Instrument for Autistic and Atypical Children by Ruttenberg, Kalish, Wenar, & Wolf (1974); Autistic Behavior Checklist by Krug, Arick, & Almond (1980)), but

Kalish, Wenar, & Wolf (1974); Autistic Behavior Checklist by Krug, Arick, & Almond (1980)), but more comprehensive standardized assessment measures were just being formulated. For instance, the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview (ADI) were both published in 1989 (Le Couteur et al., 1989; Lord et al., 1989). The ADOS was described as a standardized protocol to observe and code social and communicative behaviors by way of structured and

protocol to observe and code social and communicative behaviors by way of structured and semi-structured cues for interaction (Lord et al., 1989). The purpose of this observational measure was to acquire a quantifiable sampling of a client’s behavior in the clinic, to which other information (e.g., observations in familiar settings, caregiver interviews) about the child’s behavior are incorporated in the clinical synthesis of the case. The ADI was described as a standardized investigator-based

in the clinical synthesis of the case. The ADI was described as a standardized investigator-based interview of the primary caregiver (Le Couteur et al., 1989). The authors aimed to create a measure that captured a lifetime range of behaviors in order to differentially diagnose pervasive developmental disorders in individuals beginning at 2 years of age. Questions cover reciprocal social interaction, communication and language, and repetitive, restricted, and stereotyped behavior, as well as

communication and language, and repetitive, restricted, and stereotyped behavior, as well as symptoms not required for diagnosis but that frequently occur among individuals with autism and related disorders. These included self-injury, pica, aggression, and overactivity. The authors created the measure to fill the need for a standardized interview that covered the symptoms of autism across levels of cognitive functioning. As with the CARS, more recent versions of both measures are still being

of cognitive functioning. As with the CARS, more recent versions of both measures are still being used today; updates and clinical uses are discussed in depth in later chapters.

In the later revision of the DSM-III, DSM- III- R, the criteria for autistic disorder were expanded in an attempt to include a broader range of ages and developmental levels (Volkmar, Cicchetti, Bregman, & Cohen, 1992). In their study, Volkmar et al. (1992) found that the ICD- 10 was the closest official diagnostic system to clinical diagnosis. Additionally, there was evidence that DSM-III-R overdiagnosed autism when compared to DSM-III or clinical diagnosis; DSM-III-R diagnosis was found to be

autism when compared to DSM-III or clinical diagnosis; DSM-III-R diagnosis was found to be highly sensitive but less specific than clinical diagnosis (Volkmar et al., 1992). Indeed, the DSM-III-R criteria identified clinically diagnosed atypical pervasive developmental disorder as autism (Volkmar et al., 1992). Nevertheless, Volkmar and colleagues noted that since there was no “gold standard” for diagnosis, there was no reliable way to tell whether over- or underdiagnosis was “correct,” only that

there was no reliable way to tell whether over- or underdiagnosis was “correct,” only that it was problematic for research efforts that official diagnostic systems of that time differed so widely in their criteria.

The Last Decade In both ICD-10 and DSM-IV-TR (APA, 2004), the diagnosis of autism required evaluation of current behaviors and cognitive and language abilities, as well as consideration of developmental history. Evaluation was advised to take place across multiple settings and could involve standardized measures. Clinical judgment of several experienced professionals was recommended. Publication of the DSM-V in 2014 enacted substantial changes for the criteria of autism with significant results

of the DSM-V in 2014 enacted substantial changes for the criteria of autism with significant results (APA, 2014). The new autism spectrum disorder (ASD) would drop its previous subcategories and become a one-dimensional category. Additionally, the triad of symptom categories was reduced to just two: social communication/interaction and restricted and repetitive interests. Prior to the publication of the new criteria, the work group responsible for its development claimed the result would be

of the new criteria, the work group responsible for its development claimed the result would be increased specificity while maintaining sensitivity. Nevertheless, there was a concern that individuals with less severe symptoms of autism would no longer meet criteria and subsequently lose access to valuable services (Matson, Kozlowski, Hattier, Horovitz, & Sipes, 2012; McPartland, Reichow, & Volkmar, 2012; Worley & Matson, 2012). Indeed, several research groups suggested relaxed diagnostic

Volkmar, 2012; Worley & Matson, 2012). Indeed, several research groups suggested relaxed diagnostic algorithms following research studies that found many individuals with severe, interfering symptoms would be missed (Frazier et al., 2012; Matson et al., 2012; McPartland et al., 2012). Nevertheless, the DSM-V criteria for ASD were published as originally conceptualized. As such, controversy continues about the most accurate definition of autism; it is yet unclear which diagnostic system will be

about the most accurate definition of autism; it is yet unclear which diagnostic system will be most widely used in the future (Volkmar & McPartland, 2014). Additional information about these most recent changes and their implications is provided later in this book.

At present, practice parameters indicate the necessity of screening for core symptoms of ASD, particularly issues with social relatedness and display of repetitive or unusual behaviors (Volkmar et al., 2014). A follow-up comprehensive diagnostic assessment is recommended if the screening indicates the presence of significant symptomatology. Information should be gathered from the child, the child’s caregivers (e.g., parents, legal guardians), and the child’s service providers (e.g., classroom

caregivers (e.g., parents, legal guardians), and the child’s service providers (e.g., classroom teachers, therapists). Because genetic factors and biological markers have not yet been established for the diagnosis of ASD, assessment primarily consists of behavioral observation of the client (McCray, Trevvett, & Frost, 2014; Volkmar et al., 2014). The use of standardized measures is helpful in information collecting for both clinical observation and caregiver report, as data can be compared

information collecting for both clinical observation and caregiver report, as data can be compared across children, allowing for more accurate assessment of development and functioning. After diagnosis of autism by a qualified professional, a multidisciplinary evaluation is suggested, which may include a medical examination, genetic testing, and/or neurological assessment (Volkmar et al., 2014). Further assessment of psychological components (e.g., cognitive abilities, adaptive behavior) and

Further assessment of psychological components (e.g., cognitive abilities, adaptive behavior) and communication, occupational, and physical evaluations provide valuable information for treatment planning individualized to the client (Volkmar et al., 2014).

Although autism has a long, oftentimes controversial history in terms of diagnosis and evaluation, the above history provides a glimpse into what was the foundation for our current practice. The early criteria and assessment measures provided a basis for our current diagnostic process, although most components have been refined, empirically tested, and standardized. As briefly discussed, current goals of assessment include quantifying symptoms as much as possible through both live observation

goals of assessment include quantifying symptoms as much as possible through both live observation and caregiver report. More in-depth information regarding current assessment practices and commonly used, psychometrically sound measures is provided in the following chapters.

Overview Much research and clinical focus in recent decades has been directed towards assessing, diagnosing, and supporting children with ASD, aiming to facilitate earlier identification and support in order to improve future outcomes. Although ASD is a lifelong neurodevelopmental disorder and similar rates of diagnosis of ASD have been reported in adults as in children (approximately 1 % of the population; see Brugha et al., 2011), considerably less emphasis has been given to understanding,

population; see Brugha et al., 2011), considerably less emphasis has been given to understanding, monitoring, and supporting the development of individuals with ASD throughout later adolescence and adulthood. Recent reviews of research studies evaluating outcomes of individuals with ASD in adulthood have so far reported overall poor, although highly variable, outcomes. Many individuals with ASD in adulthood remain unemployed, depend on their families or services for many of their needs, have

in adulthood remain unemployed, depend on their families or services for many of their needs, have few meaningful friendships, have low levels of social participation, and experience high rates of associated mental health, emotional and behavioural challenges, although a significant minority achieve college or university education, are employed, and have meaningful social relationships (see Farley & McMahon, 2014; Henninger & Lounds Taylor, 2012; Levy & Perry, 2011; Magiati, Tay, & Howlin,

& McMahon, 2014; Henninger & Lounds Taylor, 2012; Levy & Perry, 2011; Magiati, Tay, & Howlin, 2014). Research is scarce on adult services (Shattuck et al., 2012), psychosocial interventions for adults (Bishop- Fitzpartick, Minshew, & Eack, 2013), and virtually nonexistent on ageing in ASD (see Happe’ & Charlton, 2012; Piven & Rabins, 2011; Wright et al., 2013). Currently, little is known about the developmental trajectory of ASD in middle and older adulthood and about how these individuals can

developmental trajectory of ASD in middle and older adulthood and about how these individuals can be supported to achieve increased independence and quality in their adult lives. For these reasons, assessment of adults with ASD for clinical and research purposes needs to become a priority.

Why Assess Adults with ASD? One important reason for assessment in adulthood is the diagnosis of ASD in previously unidentified adults, who typically fall in one of two groups: those without intellectual impairments who were never identified in childhood (Nylander & Gillberg, 2001; see Shea & Mesibov, 2009), and those who already have other existing diagnoses (primarily intellectual disability), for whom a dual diagnosis of ASD may be suspected, mainly in learning disability or residential

for whom a dual diagnosis of ASD may be suspected, mainly in learning disability or residential settings. At the same time, many individuals with childhood diagnoses of ASD are now adults or will soon be entering adulthood. Thus, the second important aim of assessment in adulthood is the monitoring of their development, functioning, strengths, needs, and preferences, so as to facilitate individualized provision and support throughout their lives. With these key purposes of assessment in mind,

provision and support throughout their lives. With these key purposes of assessment in mind, this chapter is organized by reviewing:

1. Current approaches to assessment and diagnosis of yet-unidentified adults with ASD with and without intellectual disability in the following domains: autism symptomatology and severity; intellectual functioning; adaptive functioning; language/verbal skills; and emotional, behavioral, and psychiatric comorbidity.

2. Ways in which continuous monitoring or reassessment in adulthood can be carried out to facilitate individualized planning for support and services in individuals with an existing diagnosis.
The assessment process and content are reviewed and the measures available to facilitate assessment in adulthood are summarized. Existing gaps in the assessment of adults with confirmed or suspected ASD are identified and recommendations are made for improvements in the assessment process.

Guidelines for the Identification and Assessment of Adults with Suspected ASD The National Institute of Clinical Excellence guidelines for the recognition, diagnosis, and management of adults with ASD (NICE, 2012) recommends that assessment for possible ASD in adulthood should be considered when:
(a) An adult has persistent difficulties in either social interaction, social communication, or rigid and inflexible behaviors, resistance to change, and restricted interests; and

(b) One or more of the following: (1) difficulties obtaining or sustaining education or employment or pervasive social relationship difficulties; (2) a history of a neurodevelopmental condition or mental disorder; and/or (3) past or present contact with mental health or learning disability services.

To improve the validity and experience of the diagnostic process, a comprehensive assessment needs to be carried out by a specialist multidisciplinary professional team with specific expertise in ASD (NICE, 2012). The assessment should involve a range of information gathering methods, including:

– Interviewing and observing the individual – Obtaining historical and current information from the adult, significant others, and/or from past documentation (i.e., school reports; previous assessments if any)
– Using evidence-based diagnostic procedures with adults, and self- and other-report checklists
– Comprehensively assessing co-occurring intellectual, adaptive, language, health, emotional, social, and behavioral functioning.

Diagnostic Assessment and Assessment of Autism Symptom Presentation and Severity

Cognitively Able Adults Adults without associated intellectual impairments referred for assessment of suspected ASD may face a complex and lengthy diagnostic process. Diagnosis may be particularly delayed for those with average or high intellectual abilities, whose autism symptoms may be more subtle and coping strategies better developed than is the case for individuals with ASD diagnosed in childhood (Eriksson, Andersen, & Bejerot, 2014; see also Jones, Goddard, Hill, Henry, & Crane, 2014).

(Eriksson, Andersen, & Bejerot, 2014; see also Jones, Goddard, Hill, Henry, & Crane, 2014). Often, the initial diagnostic referral may be prompted by a deterioration in emotional or mental health, loss of employment, breakdown of a significant relationship, or a related crisis. Often too, adults with undiagnosed ASD are initially referred to mental health or forensic professionals for primary concerns not relating to ASD, such as depression, anxiety, stress, relationship problems, anger,

concerns not relating to ASD, such as depression, anxiety, stress, relationship problems, anger, aggression, or, in a small number of cases, other law-breaking behaviors; and it is during their initial assessment for these concerns that a history highly suggestive of ASD begins to emerge (Jones et al., 2014). To facilitate screening and initial identification of cognitively able adults suspected of ASD, a number of self-report measures have been developed, including the Autism Quotient (AQ;

of ASD, a number of self-report measures have been developed, including the Autism Quotient (AQ; Baron-Cohen, Wheelwright, Skinner, Martin, & Clubley, 2001), the Empathy Quotient (EQ; Baron-Cohen & Wheelwright, 2004), the Social Responsiveness Scale for Adults (SRS-A; Constantino, 2012), the Broad Autism Phenotype Questionnaire (BAPQ; Hurley, Losh, Parlier, Reznick, & Piven, 2007), and the Ritvo Autism and Asperger Diagnostic Scale-14 Screen (RAADS; Eriksson et al., 2013; for a summary of all

Autism and Asperger Diagnostic Scale-14 Screen (RAADS; Eriksson et al., 2013; for a summary of all measures discussed in this chapter, please see Table 11.1). The AQ and the RAADS-R also have abridged shorter versions (i.e., AQ-10; Allison, Auyeung, & Baron-Cohen, 2012; Eriksson et al., 2013). All have been employed for research and screening purposes to varying degrees and can facilitate initial identification and referral for a more comprehensive assessment. However, they are not, in

initial identification and referral for a more comprehensive assessment. However, they are not, in themselves, diagnostic tools. Little evidence exists as to the comparative strength of these instruments, but Ingersoll et al. (2011) compared the AQ, BAPQ, and SRS-A as a dimensional measure of autistic traits in an unselected sample of undergraduate students without ASD. They found that the BAPQ and SRS-A had better internal consistency, better replicated factor structures, and higher predictive

SRS-A had better internal consistency, better replicated factor structures, and higher predictive validity than the AQ.

More than 80 % of cognitively able adults referred for possible ASD present with social interaction or relationship problems as their primary initial concern and about 50 % are primarily concerned about the presence and impact of ritualistic and inflexible behaviors or interests (Jones et al., 2014). Thus, both social/ communication and behavioral ASD symptoms need to be comprehensively assessed. Clinicians need to obtain detailed information on the history and current presentation of the core

Clinicians need to obtain detailed information on the history and current presentation of the core ASD symptoms from the individual themselves. Should a caregiver or adult sibling be available, their participation in the assessment process can be encouraged, although it is acknowledged that their involvement may not always be feasible or appropriate. Important areas of enquiry in relation to social/communication functioning should focus on past and current peer and romantic relationships in

functioning should focus on past and current peer and romantic relationships in school, college/university, and the workplace; past and current employment and relationships with colleagues/employers; social participation and interactions with others; pragmatic language and conversational skills; and understanding of social cues, rules, and expectations in varying settings and situations. Inviting the adult to complete a measure of social skills or peer relationships, such as the Social Skills

the adult to complete a measure of social skills or peer relationships, such as the Social Skills Inventory (Riggio, 1989), the Index of Peer Relations (Hudson, 1993; Klein, Beltran, & Sowers, 1990), or the Communication Skills Questionnaire (Takahashi, Tanaka, & Miyaoka, 2006), may be useful in providing preliminary information, following which a more thorough assessment of social abilities and difficulties can be completed as necessary. With regard to circumscribed behaviors and interests, the

can be completed as necessary. With regard to circumscribed behaviors and interests, the clinician should establish the nature, pervasiveness, intensity, and impact of circumscribed or rigid behaviors and interests on social functioning and relationships, eliciting specific past and recent examples. Both the positive and negative impact of the individual’s interests and behaviors need to be investigated, as many adults with ASD have special interests that are often a particular strength of

as many adults with ASD have special interests that are often a particular strength of theirs and which may positively influence their choice of studies, career, or social participation. A self-report scale, such as the Repetitive Behavior Scale (RBS; Bodfish, Symons, Parker, & Lewis, 2000), can be helpful in identifying the range and severity of stereotyped and repetitive behaviors. Sensory over- or under-sensitivity should also be explicitly enquired about in the clinical interview and this can

under-sensitivity should also be explicitly enquired about in the clinical interview and this can be facilitated by completion of self-report measures, such as the Adolescent/Adult Sensory Profile (Brown & Dunn, 2002) or the Sensory Perception Quotient (SPQ; Tavassoli, Hoekstra, & Baron-Cohen, 2014).

| Domain of functioning assessed | Assessment of cognitively able adults with ASD | Assessment of adults with ID and ASD |

|-----------------|-----------------|-----------------| | Screening for ASD/ASD symptomatology | Autism Quotient (AQ; Baron-Cohen et al., 2001)<sup>a</sup> <br> Empathy Quotient (EQ; Baron-Cohen & Wheelwright, 2004)<sup>a</sup> <br> Social Responsiveness Scale for Adults (SRS-A; Constantino, 2012)<sup>a</sup> <br> Broad Autism Phenotype Questionnaire (BAPQ; Hurley et al., 2007)<sup>a</sup> <br> Ritvo Autism and Asperger Diagnostic Scale-14 Screen (RAADS; Eriksson et al., 2013)<sup>a</sup> | ASD

Autism and Asperger Diagnostic Scale-14 Screen (RAADS; Eriksson et al., 2013)<sup>a</sup> | ASD screen of the Mini Psychiatric Assessment Schedule for Adults with Developmental Disabilities (Mini PAS- ADD; Moss, 2002a)<sup>b</sup> |

| Diagnostic measures/ assessment of severity of ASD symptomatology | Royal College of Psychiatrists (2011) structured diagnostic interview guide<sup>b</sup> <br> Ritvo Autism Asperger Diagnostic Scale-Revised (RITVO-R; Ritvo et al., 2011)<sup>b</sup> <br> Adult Asperger Assessment (AAA; Baron-Cohen et al., 2005)<sup>b</sup> <br> Asperger Syndrome Diagnostic Interview (ASDI; Gillberg et al., 2001)<sup>b</sup> <br> Autism Diagnostic Observation Schedule (ADOS-2; Lord et al., 2012)<sup>b</sup>

<br> Autism Diagnostic Observation Schedule (ADOS-2; Lord et al., 2012)<sup>b</sup> <br> Autism Diagnostic Interview-Revised (ADI-R; Lord et al., 1994)<sup>b</sup> <br> Diagnostic Interview for Social and Communication Disorders (DISCO; Wing et al., 2002)<sup>b</sup> | Diagnostic Behavioral Assessment for ASD-Revised (di-BAS-R; Sappok et al., 2014)<sup>b</sup> <br> Autism Diagnostic Observation Schedule (ADOS-2; Lord et al., 2012)<sup>b</sup> <br> Autism Diagnostic Interview-Revised (ADI-R;

Schedule (ADOS-2; Lord et al., 2012)<sup>b</sup> <br> Autism Diagnostic Interview-Revised (ADI-R; Lord et al., 1994)<sup>b</sup> <br> Diagnostic Interview for Social and Communication Disorders (DISCO; Wing et al., 2002)<sup>b</sup> |

| Social functioning/skills | Social Skills Inventory (Riggio, 1989)<sup>a</sup> <br> Index of Peer Relations (Klein et al., 1990)<sup>a</sup> <br> Social Communication Skills Questionnaire (SCSQ; Takahashi et al., 2006)<sup>a</sup> | Direct Observations, Information from Caregivers and Carers |

| Repetitive/circumscribed behaviors and interests/sensory issues | Repetitive Behavior Scale (RBS; Bodfish et al., 2000)<sup>a</sup> <br> Adolescent/Adult Sensory Profile (Brown & Dunn, 2002)<sup>a</sup> <br> Sensory Perception Quotient (SPQ; Tavassoli et al., 2014)<sup>a</sup> |  |

| Intellectual functioning | Kaufman Adolescent and Adult Intelligence Test (Kaufman & Kaufman, 1993)<sup>b</sup> <br> Wechsler Adult Intelligence Scale (WAIS; Wechsler, 2008)<sup>b</sup> <br> Wechsler Abbreviated Scale of Intelligence (WAIS; Wechsler, 1999)<sup>b</sup> <br> Stanford Binet scales-5th edition (SB5; Roid, 2003)<sup>b</sup> | Leiter international performance scale, 3rd edition (Roid et al., 2013)<sup>b</sup> <br> Test Of non-verbal Intelligence (TONI-4; Brown et al.,

edition (Roid et al., 2013)<sup>b</sup> <br> Test Of non-verbal Intelligence (TONI-4; Brown et al., 2010)<sup>b</sup> <br> Peabody Picture Vocabulary Test-3 (PPVS-3; Dunn & Dunn, 2007)<sup>b</sup> <br> Stanford Binet scales-5th edition (SB5; Roid, 2003)<sup>b</sup> |

| Executive functioning | Delis-Kaplan Executive Functions System (D-KEFS; Delis et al., 2001)<sup>b</sup> <br> Wisconsin Card Sortin Test (WCST; Hudson, 1993)<sup>b</sup> |  |

| Adaptive functioning | Waisman activities of daily living scale (Maenner et al., 2013)<sup>a</sup> <br> Vineland Adaptive Behavior Scales (VABS-II; Sparrow et al., 2005)<sup>a,b</sup> <br> Adaptive Behavior Assessment System-II (ABAS-II; Harrison & Oakland, 2003)<sup>a</sup> <br> Scales of Independent Behavior-Revised (SIB-R; Bruininks et al., 1996)<sup>a</sup> | Matson Evaluation of Social Skills for Individuals with Severe Retardation (MESSIER; Matson et al., 1998)<sup>a</sup> <br> Vineland

for Individuals with Severe Retardation (MESSIER; Matson et al., 1998)<sup>a</sup> <br> Vineland Adaptive Behavior Scales (VABS-II; Sparrow et al., 2005)<sup>a,b</sup> |

| Language/verbal skills and communication | ADOS <br> Woodcock language proficiency battery (Woodcock, 1991)<sup>b</sup> <br> Clinical Evaluation of Language Fundamentals (CELF-5; Wiig, Semel, & Second, 2013)<sup>b</sup> <br> Test of Language Competence-Expanded (TLC-Expanded; Wiig & Second, 1989)<sup>b</sup> <br> Peabody Picture Vocabulary Test-3 (PPVS-3; Dunn & Dunn, 2007)<sup>b</sup> <br> Expressive Vocabulary Test (EVT; Williams, 1997)<sup>b</sup> | Informal or structured observations of

Vocabulary Test (EVT; Williams, 1997)<sup>b</sup> | Informal or structured observations of communication/information from caregivers/carers <br> Peabody Picture Vocabulary Test-3 (PPVS-3; Dunn & Dunn, 2007)<sup>b</sup> |

| Mental health, psychiatric comorbidity; emotional and behavioral functioning | Achenbach System of Empirically Based Assessment (ASEBA; Achenbach & Rescorla, 2003) for adults<sup>a</sup> <br> Structured Clinical Interview of DSM disorders-clinician version (SCID-CV; First et al., 1996)<sup>b</sup> <br> Other self-report or clinician rated measures employed for people with mental health problems without ID/ASD | Developmental Behavior Checklist-Adult version (DBC-A; Mohr et al.,

problems without ID/ASD | Developmental Behavior Checklist-Adult version (DBC-A; Mohr et al., 2004)<sup>a</sup> <br> Psychiatric Assessment Schedules for Adults with Developmental Disabilities Checklist (PAS-ADD; Moss, 2002b)<sup>b</sup> <br> Aberrant Behavior Checklist (ABC; Aman & Singh, 1986)<sup>a</sup> <br> Autism Spectrum Disorders-Comorbidity for Adults (ASD-CA; LoVullo & Matson, 2009)<sup>a</sup> <br> Diagnostic Assessment for the Severely Handicapped-II (DASH-II; Matson,

2009)<sup>a</sup> <br> Diagnostic Assessment for the Severely Handicapped-II (DASH-II; Matson, 1995)<sup>b</sup> <br> Diagnostic Criteria for use with adults with Learning Disabilities (DC-LD; Royal College of Psychiatrists, 2001)<sup>b</sup> <br> Diagnostic Manual Intellectual Disability (Fletcher et al., 2007)<sup>b</sup> <br> Self-report Depression Questionnaire (SRDQ; Reynolds & Baker, 1988)<sup>a</sup> <br> Mood, interest and pleasure questionnaire (Ross & Oliver, 2003)<sup>a</sup> <br>

<br> Mood, interest and pleasure questionnaire (Ross & Oliver, 2003)<sup>a</sup> <br> Zung self-rating anxiety scale (Lindsay & Michie, 1988)<sup>a</sup> <br> Fear survey for adults with mental retardation (Ramirez & Lukenbill, 2007)<sup>a</sup> |

<sup>a</sup> Self- or informant report <sup>b</sup> Clinician administered  To aid clinicians, the Royal College of Psychiatrists in the UK (Berney, Brugha, & Carpenter, 2011) has produced a useful structured diagnostic interview guide. To facilitate and inform the diagnostic process, a number of semi- structured diagnostic measures can also be employed with cognitively able adults. Module 4 of the Autism Diagnostic Observation Schedule (ADOS-2; Lord, Rutter, & DiLavore, 2012), a

Module 4 of the Autism Diagnostic Observation Schedule (ADOS-2; Lord, Rutter, & DiLavore, 2012), a semi-structured observation of an individual’s current social communication, interaction, and behavior when interacting with a trained clinician, has been specifically developed for verbally fluent adults. There is emerging evidence that the use of the ADOS, together with information obtained from a caregiver using the semi- structured Autism Diagnostic Interview-Revised (ADI-R; Lord, Rutter, & Le

caregiver using the semi- structured Autism Diagnostic Interview-Revised (ADI-R; Lord, Rutter, & Le Couteur, 1994), can facilitate and improve the diagnostic process of ASD in adulthood (Bastiaansen et al., 2011). The Diagnostic Interview for Social and Communication Disorders (DISCO; Wing, Leekam, Libby, Gould, & Larcombe, 2002) can also be considered in more complex diagnostic assessments (NICE, 2012). Other structured or semi-structured diagnostic measures considered by NICE (2012) include

2012). Other structured or semi-structured diagnostic measures considered by NICE (2012) include the Ritvo Autism Asperger Diagnostic Scale-Revised (RITVO-R; Ritvo et al., 2011), the Adult Asperger Assessment (AAA; Baron-Cohen, Wheelwright, Robinson, & Woodbury-Smith, 2005), and the Asperger Syndrome (and high functioning autism) Diagnostic Interview (ASDI; Gillberg, Gillberng, Rastam, & Wentz, 2001). Of those, the ADOS-2, ADI-R, and DISCO require extensive training and practice to administer.

Adults with Intellectual Disabilities It can be difficult to determine whether adults with intellectual disabilities, especially those with severe and profound ID, also have ASD. Because individuals with ID and those with ASD often present with repetitive or circumscribed behaviors and interests, it is the assessment of social interests, functioning, relationships, and skills that is likely the most critical in differential diagnosis. Key social behaviors present in young children from the first

critical in differential diagnosis. Key social behaviors present in young children from the first few months or years of life (such as social eye contact, sharing enjoyment, use of gestures and facial expressions to communicate and share) are considerably more limited and impaired in those with mild or moderate ID and ASD compared to individuals with ID only. It is important to assess social and communication behaviors relative to the adult’s level of intellectual functioning and skills: Are

communication behaviors relative to the adult’s level of intellectual functioning and skills: Are their interactions one sided or primarily geared towards fulfilling needs only? Does their social behavior show flexibility in different settings or with different people? Do they show reduced or absent empathy or facial expressions and limited response to others relative to their developmental level? However, in individuals with severe or profound ID, it is often very difficult to differentiate

However, in individuals with severe or profound ID, it is often very difficult to differentiate between profound developmental delays in social functioning and social limitations due to ASD. In terms of possible measures, the Mini Psychiatric Assessment Schedule for Adults with Developmental Disabilities (Mini PAS-ADD; Moss, 2002a) also includes a screen specifically for ASD and could be used in the differential screening process, as can the Diagnostic Behavioral Assessment for ASD-Revised (di-

differential screening process, as can the Diagnostic Behavioral Assessment for ASD-Revised (di- BAS- R; Sappok et al., 2014). To aid differential diagnosis, the NICE guidelines (2012) also suggest the use of the ADOS and ADI-R in complex cases (see also Sappok et al., 2013). However, ADOS Modules 1 (for pre-verbal children or children using only single words) or 2 (for children with phrase speech) may need to be used, as Modules 3 and 4 are intended for verbally fluent adolescents and adults

may need to be used, as Modules 3 and 4 are intended for verbally fluent adolescents and adults and will likely not be suitable for individuals with moderate to profound intellectual disabilities and limited speech.

Assessment of Intellectual Functioning  Cognitively Able Adults Even in individuals who have successfully completed mainstream education, college, or university, an assessment of intellectual functioning can provide valuable information about their relative cognitive strengths and weaknesses. People with ASD often have uneven cognitive profiles and it may be useful to ascertain whether there are large discrepancies between visuospatial and verbal processing skills or between different subtests,

discrepancies between visuospatial and verbal processing skills or between different subtests, as variability in different skill domains may help to explain everyday challenges. A comprehensive assessment of intellectual abilities can be completed as part of the diagnostic assessment using well-established measures with adult norms. These include the Wechsler Adult Intelligence Scale (WAIS; Wechsler, 2008), the briefer Wechsler Abbreviated Scale of Intelligence (WASI; Wechsler, 1999), the

Wechsler, 2008), the briefer Wechsler Abbreviated Scale of Intelligence (WASI; Wechsler, 1999), the Stanford Binet Scales-fifth edition (SB5; Roid, 2003), or the Kaufman Adolescent and Adult Intelligence Test (Kaufman & Kaufman, 1993). In cognitively able adults, it may also be informative to assess their executive functioning, including problem solving, response inhibition, mental flexibility, and planning. Measures that can be administered for this purpose include the Delis- Kaplan Executive

planning. Measures that can be administered for this purpose include the Delis- Kaplan Executive Functions System (D-KEFS; Delis, Kaplan, & Kramer, 2001) and the Wisconsin Card Sorting Test (WCST; Grant & Berg, 1981).

Adults with Intellectual Disabilities Many individuals with ID and ASD tend to have more uneven profiles of intellectual functioning compared to those with ID only, who often present with more uniform profiles. Thus, more detailed assessment of intellectual functioning may further aid differential diagnosis of ASD in those with ID (see Wolf & Ventola, 2014). The Stanford-Binet and Wechsler scales can be employed to assess cognitive skills in those with mild or moderate ID, but they may be less

can be employed to assess cognitive skills in those with mild or moderate ID, but they may be less appropriate for some individuals with severe or profound ID and/or very limited or no speech. In such cases, the Leiter International Performance Scale (3rd Edition; Leiter-3; Roid et al., 2013), the Test Of Non-verbal Intelligence (TONI-4; Brown, Sherbenou, & Johnsen, 2010), or the Peabody Picture Vocabulary Test-4 (PPVT-4; Dunn & Dunn, 2007) can be attempted.

Assessment of Adaptive Functioning/Independence and Life Skills  Cognitively Able Adults Many individuals with ASD present with discrepancies between their often higher intellectual skills and their comparatively reduced ability to care for themselves, communicate, or relate to others in everyday life. Such difficulties, despite at least average intellectual abilities, can contribute to adjustment or emotional difficulties or the breakdown of studying, work, living arrangements, or

to adjustment or emotional difficulties or the breakdown of studying, work, living arrangements, or relationships. Thus, it may be helpful to assess adaptive functioning skills of cognitively able adults, especially those who present with or report difficulties living independently. Measures that can be employed to evaluate adaptive behavior skills include the Vineland Adaptive Behavior Scales (VABS-II; Sparrow, Cicchetti, & Balla, 2005), the Adaptive Behavior Assessment System-II (ABAS-II;

(VABS-II; Sparrow, Cicchetti, & Balla, 2005), the Adaptive Behavior Assessment System-II (ABAS-II; Harrison & Oakland, 2003), the Scales of Independent Behavior-Revised (SIB-R; Bruininks, Woodcock, Weatherman, & Hill, 1996), and the Waisman Activities of Daily Living Scale (Maenner et al., 2013). The adults themselves and/or their caregivers can act as informants and the measures can be administered using either a structured interview or a checklist format.

Adults with Intellectual Disabilities Individuals with ID and ASD present with significantly more impaired scores in the communication and social domains and higher maladaptive behaviors in the VABS when compared to adults with ID only matched for gender and IQ, but there are no differences in self-help, daily living, or gross motor skills (see Alim, Paschos, & Hearn, 2014). The measures discussed earlier for use with cognitively able adults are also appropriate for use with those with ID. In

earlier for use with cognitively able adults are also appropriate for use with those with ID. In addition, the Matson Evaluation of Social Skills for Individuals with Severe Retardation (MESSIER; Matson, Carlisle, & Bamburg, 1998) may be useful for those with severe and profound ID.

Assessment of Language/Speech/Verbal Communication  Cognitively Able Adults Although vocabulary and grammar are likely to be commensurate with cognitive abilities in most intellectually able adults with ASD, there may be impairments in other language domains, such as in prosody (the quality and intonation of speech) and in semantic and pragmatic language (i.e., the ability to initiate, organize, structure, select, and interpret social communication through language). Paul, Landa, and Simmons

structure, select, and interpret social communication through language). Paul, Landa, and Simmons (2014) recommend exploring discrepancies between higher syntax/vocabulary skills and lower pragmatic language skills, by observing the individual’s social communication in less formal, more naturalistic settings. Similarly, the American Speech- Language- Hearing Association’s 2006 guidelines in the diagnosis, assessment, and treatment of ASD across the life-span also recommend observing the

the diagnosis, assessment, and treatment of ASD across the life-span also recommend observing the individual in their natural social contexts, gathering information from the individual’s communication partners and “staging” communication contexts during the assessment to provide opportunities for communication strengths and needs to be demonstrated (Wetherby et al., 2006). The individual’s ability to initiate, understand, reciprocate, and maintain social communication through verbal and

ability to initiate, understand, reciprocate, and maintain social communication through verbal and nonverbal means (i.e., gestures, speech, facial expressions) should be assessed in less formal, observational ways and documentation of the clinician’s observations and judgment is important (Wetherby et al., 2006). Observations of the adult’s social communication and conversation skills during the ADOS interactions, for example, is one useful semi-structured way to observe pragmatic language

the ADOS interactions, for example, is one useful semi-structured way to observe pragmatic language skills during clinical assessment. In terms of selecting specific measures, very few, if any, standardized structured language tools assessing pragmatic language skills are available extending well into the adulthood years. The Woodcock Language Proficiency Battery (Woodcock, 1991) assesses oral language, vocabulary, antonyms, and synonyms, but provides little information on the more complex

language, vocabulary, antonyms, and synonyms, but provides little information on the more complex aspects of social language. Similarly, the PPVS and the Expressive Vocabulary Test-2nd edition (Williams, 2007) have norms up to the age of 90 years, but assess single-word receptive and expressive vocabulary, respectively. The 5th edition of the Clinical Evaluation of Language Fundamentals (CELF-5; Wiig, Semel, & Second, 2013) has an extended age range up to 22 years and may be useful in assessing

Semel, & Second, 2013) has an extended age range up to 22 years and may be useful in assessing social language skills in young adults. Similarly, the Test of Language Competence-Expanded (TLC- Expanded; Wiig & Second, 1989) assesses higher level functioning (i.e., understanding ambiguous language, listening comprehension, and making inferences) in young people up to the age of 18 years.

Adults with Intellectual Disabilities The PPVS and the EVT can assess single-word receptive and expressive vocabulary, respectively, in adults with ID and suspected ASD, but it is the assessment of the social use of verbal communication, even if this is rather limited, via direct observations and information from caregivers, that is more likely to be useful in assisting the process of differential diagnosis of ASD in adults with intellectual disabilities.

Assessment of Emotional and Behavioral Functionin g/ Psychiatric Comorbidity  Cognitively Able Adults Individuals referred for suspected ASD for the first time in adulthood often initially present to professionals with mental health problems, primarily depression and anxiety (Hofvander et al., 2009; Lugnegard, Hallerback, & Gillberg, 2011). Symptoms of ADHD are also common. Although most of the existing literature has so far focused on children and adolescents, considerable efforts have been

existing literature has so far focused on children and adolescents, considerable efforts have been made in the last few years in order better to understand the comorbidity between ASD and other psychiatric disorders (for work with adults, see Buck et al., 2014; Joshi et al., 2013; Takara & Kondo, 2014). A comprehensive assessment should therefore focus on identifying and understanding common emotional and behavioral difficulties, including low mood and self-esteem, anxiety, aggression towards

and behavioral difficulties, including low mood and self-esteem, anxiety, aggression towards self or others, self-neglect, and abuse (NICE, 2012). At the symptom level, the clinician needs to identify co-occurring psychiatric problems and to try to disentangle core autism from associated psychiatric symptoms as much as possible. For example, common areas of “diagnostic over-shadowing” involve social avoidance and repetitive behaviors, which could be a presenting concern in both ASD and social

avoidance and repetitive behaviors, which could be a presenting concern in both ASD and social anxiety or OCD, respectively. Careful consideration of similarities and differences between core ASD and psychiatric symptoms is important, for example considering whether social avoidance is primarily due to a limited interest in social interactions, limited social skills, or excessive anxiety. Similarly, behaviors described as “obsessive” or “ritualistic” in ASD tend to be qualitatively different

behaviors described as “obsessive” or “ritualistic” in ASD tend to be qualitatively different and to serve different purposes from OCD obsessions and compulsions (i.e., see Kerns & Kendall, 2013). The assessment should also include a careful exploration of environmental factors that may trigger or exacerbate mental health difficulties (i.e., family and other social relationships and support systems, life events, recent changes or breakdown of family, employment, or living arrangements). When

life events, recent changes or breakdown of family, employment, or living arrangements). When adult clients present with mental health concerns as their primary concern, but ASD is suspected, the clinicians should examine the client’s developmental and psychiatric history in order to explore evidence of pervasive social, communication, and behavioral impairments associated with ASD throughout the individual’s life. Few ASD-specific measures exist to assess psychiatric comorbidity, but several

individual’s life. Few ASD-specific measures exist to assess psychiatric comorbidity, but several measures developed for adults without ASD can be used, even though their content and standardization data are not always entirely relevant for individuals with ASD. For example, the Achenbach System of Empirically Based Assessment (ASEBA; Achenbach & Rescorla, 2003), which includes self- and caregiver/informant-completed checklists for adults, can be employed. To aid differential diagnosis, the

checklists for adults, can be employed. To aid differential diagnosis, the Structured Clinical Interview of DSM Disorders Clinician Version (SCID-CV; First, Spitzer, Gibbon and Williams 1996) can aid in obtaining detailed information about a range of psychiatric conditions from the adult or their caregiver/significant others. Two broad important adaptations need to be taken into consideration when such measures are used. Firstly, clinicians may need to modify the way the interview or self-rating

such measures are used. Firstly, clinicians may need to modify the way the interview or self-rating form is presented. For example, many adults with ASD have difficulties talking about and describing emotions and it may be necessary to provide concrete definitions or explanations of items and/or to include visual aids, such as the use of an emotion “thermometer” or “volume” scale to describe emotions. Secondly, clinicians are encouraged to probe for both typical and less typical presentations of

Secondly, clinicians are encouraged to probe for both typical and less typical presentations of emotional difficulties, as there is evidence that people with ASD present with some symptoms which are very similar to those experienced by psychiatric populations, but also with atypical presentations of more ASD-specific fears, worries, or anxiety (i.e., Kerns et al., 2014; Ozsivadjian, Knott, & Magiati, 2012).

Adults with Intellectual Disabilities The assessment of mental health in those with ID and ASD needs to be modified to take intellectual disability, more limited verbal skills, and additional impairments into consideration (see Alim et al., 2014). One of the most clinically useful ways in identifying the potential onset of a psychiatric concern in this population is to look for changes in behavior compared to earlier, premorbid functioning, instead of focusing on current behavior only (see also

compared to earlier, premorbid functioning, instead of focusing on current behavior only (see also Deprey & Ozonoff, 2009). When an individual shows significant changes in their behavior (i.e., becomes more socially withdrawn, shows increased aggression/irritability, or presents with decreased engagement in activities) compared to their earlier functioning, this may indicate the onset of co-occurring physical or mental health problems requiring further assessment. The onset of new behaviors may

physical or mental health problems requiring further assessment. The onset of new behaviors may also be indicative of the need to further evaluate emotional well-being. It is important to assess predisposing, precipitating, maintaining, and protective psychosocial and environmental factors (i.e., change in residential setting or carer, illness in the family, a supportive sibling), not merely individual or organic factors (see Magiati, Tsakanikos & Howlin, 2014). Because challenging behaviors

or organic factors (see Magiati, Tsakanikos & Howlin, 2014). Because challenging behaviors (i.e., self- injurious, aggressive or inappropriately sexualized behaviors) can be common in individuals with ID, the NICE guidelines recommend functional analysis assessment of individual and environmental factors triggering or maintaining specific problem behaviors (NICE, 2012; see also Alim et al., 2014) in order to guide the development of specific behavioral intervention programs. In terms of measures,

order to guide the development of specific behavioral intervention programs. In terms of measures, few have been developed specifically for individuals with ASD. However, a number has been developed for individuals with ID, which may also be employed in the psychiatric assessment of people with ID and ASD. These tend to rely mainly on information obtained from significant others and/or direct behavioral observations. For checklists completed by carers who know the adult well, the Developmental

observations. For checklists completed by carers who know the adult well, the Developmental Behaviour Checklist-Adult version (DBC-A; Mohr, Tonge, Einfeld, & Gray, 2004) is a comprehensive and well-established screening measure of problem behaviors for individuals with ID and developmental disabilities. The Psychiatric Assessment Schedules for Adults with Developmental Disabilities checklist (PAS- ADD; Moss, 2002b) is a 25-item questionnaire also completed by care staff or families. The

(PAS- ADD; Moss, 2002b) is a 25-item questionnaire also completed by care staff or families. The Aberrant Behavior Checklist (ABC; Aman & Singh, 1986) is a reliable and valid caregiver- or clinician-completed checklist measuring a range of problem behaviors with participants with ID and ASD. The Autism Spectrum Disorders- Comorbidity for Adults (ASD-CA; LoVullo & Matson, 2009) is another measure that can aid the assessment of comorbid difficulties in this population. For individuals with severe

that can aid the assessment of comorbid difficulties in this population. For individuals with severe and profound ID, the informant-rated Diagnostic Assessment for the Severely Handicapped-II (DASH-II; Matson, 1995) can also be useful. The diagnostic process of establishing psychiatric comorbidity in individuals with ID and ASD can also be facilitated by the use of standardized instruments such as the Diagnostic Criteria for use with adults with Learning Disabilities by the Royal College of

as the Diagnostic Criteria for use with adults with Learning Disabilities by the Royal College of Psychiatrists (DC-LD; Szymanski, 2002) and the Diagnostic Manual-Intellectual Disability (DM- ID; Fletcher, Loschen, Stavrakaki, & First, 2007). A small number of self-report measures has also been developed, which may be helpful with those who can respond to simplified items administered verbally. These include the Self-Report Depression Questionnaire (SRDQ; Reynolds & Baker, 1988), the Mood,

These include the Self-Report Depression Questionnaire (SRDQ; Reynolds & Baker, 1988), the Mood, Interest and Pleasure Questionnaire (Ross & Oliver, 2003), the Zung Self-Rating Anxiety Scale (Lindsay & Michie, 1988), and the Fear Survey for Adults with Mental Retardation (Ramirez & Lukenbill, 2007). For all clients with a presentation of depression, severely debilitating anxiety, self-harm, or suicidal ideation, irrespective of their intellectual or verbal skills, a careful risk assessment and

ideation, irrespective of their intellectual or verbal skills, a careful risk assessment and management plan needs to be developed. This risk assessment should also take into account any past, current, or likely future trouble with the criminal justice system (Cheely et al., 2012; see Woodbury-Smith, 2014).

Assessment for Life: Ongoing Assessment in Adults and Older Adults with ASD Many, although not all, adults with ASD will need varying levels of support, services, and resources at different points in their lives, depending on their skills, strengths, and needs and the social and environmental resources available to them. The few systematic studies of individuals with ASD in older adulthood suggest that opportunities for development throughout the lifespan need to be provided, as they can lead

that opportunities for development throughout the lifespan need to be provided, as they can lead to increased skills and improved quality of life and social participation even in later stages of life (i.e., Donovan & Zucker, 2010). Ongoing assessment in adults and older adults with ASD with or without ID thus serves a number of potential functions.

Assessment to Aid Transition Planning and Support Many adults with ASD share similar hopes and expectations about their adult lives as individuals without ASD or ID, but may require improved understanding and acceptance of their condition and/or additional support at vulnerable or stressful times to achieve their life goals. For this reason, a comprehensive psychosocial assessment needs to be carried out during late teenage or young adult years to facilitate a better understanding of the

be carried out during late teenage or young adult years to facilitate a better understanding of the individual’s strengths, needs, challenges, and preferences. Gathering information can be achieved through interviews with the adult themselves, reports from caregivers, siblings, partners, significant others, and/or professional carers, as well as through direct observation. Particularly important time points for an individualized assessment are prior to major transitional periods (i.e., from

time points for an individualized assessment are prior to major transitional periods (i.e., from school to post-school education or vocational training; from living with family members to living with peers, alone, or in residential settings; before and during the adult’s first employment; when changing jobs; or when anticipating a significant change in social support, such as ill health or ageing of family member). Structured assessments, such as the TEACCH Transition assessment Profile (TTAP;

of family member). Structured assessments, such as the TEACCH Transition assessment Profile (TTAP; Mesibov, John, Thomas, Chapman, & Schopler, 2007) and the Transition Planning Inventory-Updated Version (TPI-UV; Clarm & Patton, 2006), have been developed to enable a more systematic evaluation of skills at home, education, and/or work. In 2014, Autism Speaks, together with Virginia Commonwealth University’s Rehabilitation Research and Training Center, developed a comprehensive Community based

University’s Rehabilitation Research and Training Center, developed a comprehensive Community based Skills Assessment (CSA) to facilitate a successful transition process. The CSA assesses eight functional life skill areas (career path and employment, self- determination, health and safety, peer relationships, community participation and finances, transportation, leisure, and home living skills) in individuals aged 12 years or older using both criterion-based observations and interviews.

Assessment to Support Vocational Training and Employment Employment has been found positively to affect the well-being and quality of life of adults with ASD (Walsh, Lydon, & Healy, 2014), although little is currently known about how best to enable and support individuals with ASD to seek and maintain employment (see Lounds-Taylor & Mailick Seltzer, 2012; Chen et al., 2015, for reviews). The very few studies that have been carried out examining predictors of successful employment in adults

very few studies that have been carried out examining predictors of successful employment in adults with ASD (see Walsh et al., 2014 for a review) highlight that assessment for employability and employment purposes needs to gather information about:

• Individual characteristics and skills (i.e., communication and interpersonal skills, educational level, decision making and problem solving, flexibility and ability to prioritize, mental health or behavioral challenges, ability to ask for help, motivation, interests, and skills)
• Family and social factors (i.e., amount and quality of family support, family’s socioeconomic and educational standing)

• Employment characteristics (i.e., environmental modifications, autism awareness, supervision and implementation of behavioral contracts, utilization of employment support services)

Therefore, the assessment may need to examine whether there are individual risk factors that may limit employment success and to measure the extent to which the employment environment is well suited (or can be adapted) for the person with ASD. For cognitively able adults with ASD, traditional psychological and achievement assessments may be used to better understand the individual’s needs, strengths, and challenges in different employment settings. The extent to which the individual might

and challenges in different employment settings. The extent to which the individual might benefit from supported employment schemes or other workplace accommodations also needs to be assessed. For adults with ASD and ID, the Adolescent and Adult Psychoeducational Profile (Mesibov, Schopler, & Caison, 1989) is a structured assessment for adults with severe developmental disabilities that assesses vocational, adaptive, leisure, communication, and interpersonal skills—it can provide helpful

vocational, adaptive, leisure, communication, and interpersonal skills—it can provide helpful recommendations for future education, vocational training, or living arrangement planning. For all individuals with ASD, emphasis should be placed on assessing adaptive, rather than cognitive, skills, as these are more likely to affect employability and employment prospects.

Assessment to Aid Independent or Supported Living Most adults with ASD continue to live with their families well into their adult years, although an increasing number live on their own or with peers. When caregivers grow older or become frailer, there may be a need for alternative living arrangements. Thus, assessment, ideally in a planned and systematic way well before the caregivers are no longer available, can support decision making regarding optimal care and living arrangements. This

longer available, can support decision making regarding optimal care and living arrangements. This assessment should be strength based and focus on community-based living and adaptive skills; the adult’s wishes and preferences should also be taken into consideration.

Assessment to Improve Quality of Life and Mental Well-Being Individuals with ASD with or without ID are vulnerable to experiencing emotional and behavioral difficulties that can significantly impact on their quality of life. Thus, ongoing screening and enquiring about their mental health should be incorporated into routine follow-up assessments, especially at stages of their adult lives when challenges or stressful life events may be anticipated (see earlier sections for more on how to assess

or stressful life events may be anticipated (see earlier sections for more on how to assess psychopathology in adults with ASD with or without ID).

Assessment to Monitor Response to Interventions or Care Plans There is a limited, but growing, literature examining whether pharmacological or psychosocial interventions for core symptoms of ASD or associated comorbidities are effective when implemented in adults (i.e., Bishop-Fitzpartick et al., 2013). Thus, assessment of pharmacological, psychological, or environmental interventions is necessary to determine their relative effectiveness and to identify key “ingredients.” Assessing progress

to determine their relative effectiveness and to identify key “ingredients.” Assessing progress is also needed to ensure that treatment programs or care plans are appropriately modified and tailored to individual needs.

Assessment of Older Adults with ASD “The aging process in ASD remains … under- investigated and thus poorly understood” (Mukaetova-Ladinska, Perry, Baron, & Povey, 2011). Happe and Charlton (2012) also highlighted the fact that very little empirical work has been carried out relating to ASD in old age. Dementia, for example, is more common in people with ID, particularly in those with Down’s syndrome, than in people without ID, but little is known about the rates and presentation of dementia

than in people without ID, but little is known about the rates and presentation of dementia or other ageing-related conditions in older adults with ASD.

Assessment to Improve Knowledge of Developmental Trajectories of ASD Across the LifeSpan

The few long-term follow-up studies of adults who were diagnosed with ASD in childhood (see Overview, this chapter) generally report poor, although highly variable, outcomes. However, many of the participants included in these studies were diagnosed as children in the 1960s, 1970s, or early 1980s, and in all likelihood these “older” samples included people with more “classic” autism who received no or very little early intervention or education. Little is known about the adult outcomes of

no or very little early intervention or education. Little is known about the adult outcomes of individuals with ASD who were diagnosed as children in the 1980s and 1990s, who were more likely to receive early intervention and specialist education. Thus, it is imperative that assessment of these individuals in young and later adulthood continues in order to improve our understanding of their developmental trajectory across the spectrum. So far, many longitudinal studies have focused mainly on

trajectory across the spectrum. So far, many longitudinal studies have focused mainly on cognitive and language functioning in adulthood, although more recent studies have also assessed more socially relevant areas of functioning, such as independent/adaptive behavior skills, relationships and social participation, emotional well- being, and quality of life (see Magiati et al., 2014 for a review).

Assessment of and for Families of Adults with ASD The strengths and needs of the family, partner, or carer(s) of the adult with ASD need to be evaluated and taken into consideration when care plans are developed (NICE, 2012). Families are often important informants in the assessment process; however their own needs also need to be assessed and met. Specifically, clinicians need to assess the support and resources that would help families in their ongoing caring responsibilities and to include

and resources that would help families in their ongoing caring responsibilities and to include these in planning for the future care of the adult with ASD (NICE, 2012). Families, partners, or carers may require advice, education, training, and/or support to meet the complex needs of their adult with ASD and may also need support to meet their own needs.

Assessment in Adulthood: Summary, Recommendations, and Conclusions Currently, little is known about how best to assess and support individuals with ASD in adulthood. We also know little about the developmental nature of the condition beyond young or middle adulthood. Although assessment of adults with ASD should be comprehensive and lead to specific recommendations for support, provisions, and interventions, there are currently very few professionals with the required expertise and skills

interventions, there are currently very few professionals with the required expertise and skills working with adults with ASD who can actually implement these recommendations, while adult services continue to be scarce in most countries. This creates considerable challenges for assessment in adulthood, as often helpful recommendations simply cannot be implemented following assessment, because the resources and supports required are nonexistent or extremely limited. Another considerable

the resources and supports required are nonexistent or extremely limited. Another considerable challenge in assessment in adulthood is the limited range of suitable standardized measures available that extend into the older adult years and have some evidence of sound measurement properties when employed with individuals with ASD. Thus, another research and clinical priority is the evaluation of existing measures when used with adults with ASD and/or the development of measures suitable to

of existing measures when used with adults with ASD and/or the development of measures suitable to assess their skills and needs. Assessment of adults with ASD also needs to include the immediate, proximal, and more distant systems around the individual. Thus, in addition to assessing the individual’s skills and needs, we should also evaluate the quality, amount, and role of family, peer, employment, and community support (see also Henninger & Taylor, 2012, who advocate for a need to measure

and community support (see also Henninger & Taylor, 2012, who advocate for a need to measure success and progress in adulthood in a dynamic integrated person- environment framework). In order for any assessment at this developmental stage to be meaningful, we need to concentrate on the translation of the assessment findings into the “real” world and the extent to which we can implement the recommendations derived from the assessment. Our assessment findings should first and foremost identify needs

derived from the assessment. Our assessment findings should first and foremost identify needs to be met and skills or qualities to be strengthened, but policy makers, governments, and health organizations need to seriously catch up, so that improvements in the assessment process can be put in good use to improve the lives and outcomes of adults with ASD.

Introduction Many theories have been put forth to explain the primary deficits seen in individuals diagnosed with Autism Spectrum Disorder (ASD). Specific efforts have been directed towards the description and characterization of core clinical symptoms demonstrated by these individuals in addition to related behavioural and/or cognitive features that may be unique to this population. The Executive Function (EF; Ozonoff, Pennington, & Rogers, 1991 ) theory has been researched extensively to aid in

(EF; Ozonoff, Pennington, & Rogers, 1991 ) theory has been researched extensively to aid in these efforts. The primary focus of these efforts has been to understand and describe EF abilities in individuals with ASD and to link those abilities to the primary impairments demonstrated by individuals within this population. The purpose of this chapter is to review information pertaining to EF in individuals with ASD. We begin with an overview of the construct of EF and its relation to

to EF in individuals with ASD. We begin with an overview of the construct of EF and its relation to neuropsychological functioning. Common approaches to measurement/evaluation of EF will be described. Subsequently, typical development of EF will be reviewed and compared to EF development in ASD. Specific literature pertaining to EF impairment in ASD and its relation to the social and behavioural atypicalities often seen in ASD will also be presented. Additional research regarding EF and neural

atypicalities often seen in ASD will also be presented. Additional research regarding EF and neural structures and brain imaging in individuals with ASD will be reviewed. The chapter will end with a discussion of intervention strategies for EF in ASD, implications of the findings of EF in ASD, and future research opportunities.

Executive Function The term ‘Executive Functions’ was introduced in relation to the work of Luria ( 1966 ), who proposed a cognitive system in charge of intentionality and formulation of thoughts and actions, the identification of goal-appropriate cognitive routines, and evaluation of outcomes. Some researchers gravitate towards the use of the term ‘executive control’ in place of EF. This is largely due to the term capturing the self-regulatory nature of the processes involved, highlighting the

due to the term capturing the self-regulatory nature of the processes involved, highlighting the need of the individual to purposefully modulate and control in some fashion (Wiebe et al., 2011 ). Nevertheless, ‘EF’ continues to be the most popular term put forth in the literature. This area of mental functioning (i.e. EF) has been shown to be primarily regulated by the prefrontal cortex through imaging and neuropsychological studies, though it is not solely responsible for these cognitive

imaging and neuropsychological studies, though it is not solely responsible for these cognitive processes (Elliott, 2003 ; Godefroy, 2003 ; Goldman- Rakic, 1987 ; Rubia et al., 2001 ; Rubia, Smith, Brammer, & Taylor, 2003 ). As such, this area of the brain is now thought to act primarily as a ‘control centre’ to mediate these cognitive functions with connections extending to other brain regions (Miller & Cohen, 2001 ). Baddeley and Hitch ( 1974 ) were the first to describe EF as a ‘central

(Miller & Cohen, 2001 ). Baddeley and Hitch ( 1974 ) were the first to describe EF as a ‘central executive’ , further defined by Lezak ( 1983 ) to include a central process that controls how human behaviour is expressed. While concrete definitions have varied over time (see Jurado & Rosselli, 2007 ), EF is a broad term currently used to refer to higher cognitive processes that allow one to mediate their behaviour in response to an ever-changing environment (Sokol, Muller, Carpendale, Young, &

their behaviour in response to an ever-changing environment (Sokol, Muller, Carpendale, Young, & Iarocci, 2010 ). It has also been defined as ‘the ability to maintain an appropriate problem- solving set for attainment of a future goal’ (Ozonoff, Pennington, et al., 1991 ). EF is an umbrella term that encompasses three core interacting, yet theoretically distinct processes including inhibition of prepotent (or automatic) responses, working memory, and cognitive flexibility (Best & Miller, 2010 ;

prepotent (or automatic) responses, working memory, and cognitive flexibility (Best & Miller, 2010 ; Joseph & Tager- Flusberg, 2004 ; Miyake & Friedman, 2012 ; Toplak, West, & Stanovich, 2013 ). The arrival of some consensus surrounding the foundational nature of inhibition, working memory, and cognitive flexibility has been gleaned through statistical modelling and meta-analysis with data from neuropsychological test batteries at many ages of human development (Friedman, Miyake, Robinson, &

neuropsychological test batteries at many ages of human development (Friedman, Miyake, Robinson, & Hewitt, 2011 ; Miyake, Friedman, Emerson, Witzki, & Howerter, 2000 ; Rose, Feldman, & Jankowski, 2011 ; Zelazo & Muller, 2002 ). It is important to note that despite some inconsistent results, strong evidence exists for the validity of EF being composed of separate control processes as opposed to a single EF ability. Support for this theory includes studies that have shown low intercorrelations

a single EF ability. Support for this theory includes studies that have shown low intercorrelations between different executive tasks, around r = 0.40 or less (Lehto, 1996 ; Miyake et al., 2000 ; Salthouse, Atkinson, & Berish, 2003 ). The low correlations suggest minimal underlying commonality between EF tasks, or more likely, the possibility of a mechanism that ties their functions together.

Inhibition Inhibition ( IN) is the ability to control a response that will not support goal attainment and instead activate an appropriate alternative (Calhoun, 2006 ). In essence, it is self-control (Best & Miller, 2010 ). IN can be conceptualized as either simple, where a prepotent response must simply be held back, or complex, where an arbitrary rule must be held in mind to hold back a response in favour of an alternate one. An example of simple inhibition may include holding back the

in favour of an alternate one. An example of simple inhibition may include holding back the prepotent response to scratch an itch, or to cross the street as one last car speeds through the intersection even if the ‘walk’ sign has already turned on. A more complex example may be inhibiting the desire to make a merchandise purchase to instead review one’s finances and consult with a significant other before doing so. Inhibitory ability has been postulated as being foundational to both the

other before doing so. Inhibitory ability has been postulated as being foundational to both the development and function of EF . This component of EF underlies the regulation of emotion, cognition, and behaviour (Miyake et al., 2000 ; Nigg, 2000 ). Barkley ( 1997 ) defines accurate performance across all areas of EF as relying upon a basis of behavioural IN ability. Thus, due to the importance of inhibitory development (and ability), and its underlying importance to EF development in general, it

development (and ability), and its underlying importance to EF development in general, it remains an important focus for study in childhood.

Working Memory Working memory ( WM ) is the ability to hold information in a system of short-term memory while manipulating it and comparing it with information held in long-term memory without the use of external cues or aids (Alloway, Gathercole, & Pickering, 2006 ; Calhoun, 2006 ). For example, WM would be utilized when performing mental calculations or rehearsing a phone number in a specific way in order to remember it. More recent research has provided information on a sub-process of WM

way in order to remember it. More recent research has provided information on a sub-process of WM termed ‘updating’, which refers to the important cognitive process of not just maintaining information in WM, but choosing what information enters and leaves WM due to the limited capacity it has. In one of the original models of WM by Baddeley and Hitch ( 1974 ), it was hypothesized that short- term visual and auditory information is stored and manipulated in WM, specifically, in the visuo-spatial

visual and auditory information is stored and manipulated in WM, specifically, in the visuo-spatial sketchpad and phonological loop respectively (Baddeley, 2002 ).

Cognitive Flexibility Cognitive flexibility ( CF ), or set shifting, is the ability to perceive events in a different manner, respond in unique ways, and/or to make necessary cognitive adjustments to assist goal attainment (Calhoun, 2006 ; Miyake et al., 2000 ). For example, there are different social expectations for how an individual should act in a shopping mall versus during a church service, and switching appropriately between these sets is optimal to participating in each situation.

and switching appropriately between these sets is optimal to participating in each situation. Cognitive flexibility is also important during conversational exchanges , or any situation in which topics or ideas may switch rapidly and one must show adaptability. For example, during an argument with a peer, an individual must shift his/her mindset to account for the other person’s perspective in order to find a solution to the issue at hand.

Development of EF Neuroimaging studies have shown that the frontal lobes begin activation at approximately 6 months of age, despite previous beliefs that they were relatively inactive during childhood (Chugani, Phelps, & Mazziotta, 1987 ; Jurado & Rosselli, 2007 ). Through myelination, synaptic pruning, and synaptic growth, the frontal lobes and prefrontal cortex (PFC) continue to mature into late adolescence and even into early adulthood (Casey, Amso, & Davidson, 2006 ; Fuster, 1993 ; O’Hare

adolescence and even into early adulthood (Casey, Amso, & Davidson, 2006 ; Fuster, 1993 ; O’Hare & Sowell, 2008 ). It follows then that the trajectory of development of EF coincides with the development of the PFC. In fact, researchers theorize that during typical development, many of the stages associated with childhood growth (e.g. preschoolers’ ability to think of the past, plan for the future, and begin making more complex decisions) are related to the maturity of EF (Denckla, 1996 ). In

and begin making more complex decisions) are related to the maturity of EF (Denckla, 1996 ). In general, EF ability appears to develop sequentially as the PFC continues to mature, with growth periods identified between birth to 2 years, 7–9 years, and 16–19 years, with variations expected for every child (Anderson, Anderson, Northam, Jacobs, & Catroppa, 2001 ; Anderson, Levin, & Jacobs, 2002 ; Anderson, Northam, Hendy, & Wrenall, 2001 ). Regarding the development and differentiation of early EF

Northam, Hendy, & Wrenall, 2001 ). Regarding the development and differentiation of early EF abilities, some researchers argue that control processes (i.e. IN, WM, and CF) are not fully separable early in development. Specifically, the assessment of EF in young children requires language, visual-spatial abilities, memory, and motor skills among others that are still in the early stages of development and are thus likely to influence assessment (Wiebe et al., 2011 ). When statistical procedures

and are thus likely to influence assessment (Wiebe et al., 2011 ). When statistical procedures such as confirmatory factor analysis are used to identify separate non-EF from EF abilities in very young children, some results indicate that a single- factor EF model best fits the data. This trend appears to exist specifically for children between 3 and 6 years old, where no improvement in statistical models is seen when separate IN, WM, or CF components are added (Hughes, Ensor, Wilson, & Graham, 2010

is seen when separate IN, WM, or CF components are added (Hughes, Ensor, Wilson, & Graham, 2010 ; Wiebe, Espy, & Charek, 2008 ). Thus, although some researchers believe that IN, WM, and CF can be measured separately in early development, many studies point to a single EF factor that does not clearly diversify until later preschool years (Garon, Bryson, & Smith, 2008 ).

In summary, EF develops through infancy and childhood, with maturation continuing into adolescence and young adulthood. IN is the first EF observed in children’s behaviour, with CF significantly improving later in childhood, and WM continuing to strengthen into adolescence. Best and Miller ( 2010 ) suggest that these similar, yet differing trajectories of development are in support of the differentiation of these EF components despite appearing inseparable in infancy/early development .

differentiation of these EF components despite appearing inseparable in infancy/early development . Importantly, different EF abilities appear to have different developmental patterns, with some acting as the basis for others, and certain components not reaching full maturity until late adolescence (Best & Miller, 2010 ; Passler, Isaac, & Hynd, 1985 ). The following description outlines the typical developmental course of IN, WM, and CF.

Inhibition Infants can display some simple IN ability, such as delaying the urge to eat a treat, with rapid gains observed through early childhood (Garon et al., 2008 ). By 1 year of age, babies can inhibit an over-learned response, with the largest gains in inhibitory ability observed in children between 6 and 9 years of age (Brocki & Bohlin, 2004 ; Klenberg, Korkman, & Lahti-Nuutila, 2001 ; Passler et al., 1985 ). Most research seems to indicate adult- level mastery of IN between 10 and 12

et al., 1985 ). Most research seems to indicate adult- level mastery of IN between 10 and 12 years of age (Passler et al., 1985 ; Welsh, Pennington, & Grossier, 1991 ). However, inhibitory ability continues to be refined through adolescence and adulthood as its application relies on relevant cognitive skills and life experiences (Best & Miller, 2010 ).

Working Memory Working memory (WM) involves more complex use of EF through the maintenance and manipulation of information, and thus its development relies on more PFC activity (D’Esposito & Postle, 1999 ). Simple WM, such as keeping information in the phonological loop (e.g. remembering a phone number), is present during the preschool years, with more complex WM ability, such as being able to recite given digits in reverse order, beginning to develop around 6 years of age (Garon et al., 2008

given digits in reverse order, beginning to develop around 6 years of age (Garon et al., 2008 ; Gathercole, Pickering, Ambridge, & Wearing, 2004 ). Luciana, Conklin, Hooper, and Yarger ( 2005 ) observed that both simple and complex WM abilities improved linearly between the ages of 4 and 14–15. In general, WM ability improves into adolescence and adulthood, likely due to cognitive and neural maturation .

Cognitive Flexibility Miyake and colleagues ( 2000 ) point out that IN is essential for shifting between mental sets (i.e. cognitive flexibility; CF), as a new set must be the focus of attention and the previous one inhibited. Additionally, WM abilities are required to some degree to switch between sets of mental rules (Best & Miller, 2010 ). As with other EF abilities, CF improves with age, starting with the ability to shift between two simple response sets around 3–4 years of age (Anderson et

with the ability to shift between two simple response sets around 3–4 years of age (Anderson et al., 2002 ; Hughes, 1998 ). As children reach 7–9 years-old, they begin to show the ability to maintain and shift between multiple mental sets, with the ability levelling off at approximately 15 years of age (Huizinga, Dolan, & Van der Molen, 2006 ), and continuing to mature throughout adolescence (Anderson et al., 2002 ; Davidson, Amso, Anderson, & Diamond, 2006 ; Zelazo & Frye, 1998 ).

Relation to Cognition Cognitive intelligence ( IQ ) is difficult to define as it is utilized in numerous contexts. In general, it refers to ‘the aggregate or global capacity of the individual to act purposefully, to think rationally, and to deal effectively with his/her environment’ (Wechsler, 1944 ). This construct is most often used in reference to standardized testing where an individual is compared to age-related peers to determine if specific areas of cognitive strength or weakness are

compared to age-related peers to determine if specific areas of cognitive strength or weakness are apparent. As has been noted frequently in the research literature, although EF and IQ may be related, they are different cognitive constructs (Kolb & Winshaw, 1990 ; Pennington & Ozonoff, 1996 ). Indeed, a common misperception is apparent in clinical practice and the research literature regarding the relationship between EF and IQ. A high degree of overlap is often cited in the research literature,

relationship between EF and IQ. A high degree of overlap is often cited in the research literature, stemming primarily from the work of Sternberg (Sternberg, 1985 ; Sternberg & Gardner, 1982 ). This line of research has proposed that g or general intelligence represents a person’s overall cognitive intellectual functioning, and that individual differences in EF can be explained by differences in g . Corollaries of this hypothesis have been explored and challenged (Crinella & Yu, 2000 ). Three

g . Corollaries of this hypothesis have been explored and challenged (Crinella & Yu, 2000 ). Three lines of evidence have been put forward to challenge this notion of EF/IQ interdependence . First, if such a direct relationship exists, then tasks with a higher g loading will necessarily draw more upon EF than tasks with low g loadings. Researchers investigating this relationship between IQ and EF have shown that, although a positive correlation may exist between EF and IQ measures, the

and EF have shown that, although a positive correlation may exist between EF and IQ measures, the correlations are quite low (Ardila, Pineda, & Rosselli, 2000 ; Arffa, 2007 ; Welsh et al., 1991 ). Moreover, this relation appears to be most related to one aspect of cognitive ability, fluid intelligence, rather than crystallized intelligence. Several researchers have reported that individuals affected by some childhood disorders, such as learning disorders, autism spectrum disorder,

affected by some childhood disorders, such as learning disorders, autism spectrum disorder, phenylketonuria, and attention-deficit/hyperactivity disorder (AD/HD), demonstrate poor performance on measures of fluid intelligence and EF but relatively intact overall crystallized intelligence (Barkley, 1997 ; Berlin, 2003 ; Diamond, Prevor, Callendar, & Druin, 1997 ; McLean & Hitch, 1999 ; Pennington & Ozonoff, 1996 ; Stanovich, Siegel, & Gottardo, 1997 ; Swanson, 1999 ).

Second, if such a direct relationship between EF and IQ exists, then individuals with impairment in one area should necessarily demonstrate impairment in the other. There is ample research evidence that many individuals, such as those with AD/HD, demonstrate consistent EF deficits (Barkley, 1995 , 1997 ; Pennington, Grossier, & Welsh, 1993 ). However, the mean Full Scale IQ scores of individuals with AD/HD do not reflect this impairment. Although individuals with AD/HD often display unique areas

AD/HD do not reflect this impairment. Although individuals with AD/HD often display unique areas of deficit on common measures of intelligence such as the Wechsler Intelligence Scale for Children—Fourth Edition (WISC-IV; Wechsler, 2003 ), the effect size of this difference is not large, nor is it commensurate with their demonstrated EF deficits (Mayes & Calhoun, 2006 ; Schwean & McCrimmon, 2008 ; Schwean & Saklofske, 2005 ). Thus, although individuals may demonstrate an EF deficit, they do not

; Schwean & Saklofske, 2005 ). Thus, although individuals may demonstrate an EF deficit, they do not necessarily demonstrate an equivalent IQ deficit (Schwean, Saklofske, Yackulic, & Quinn, 1993 ; Swanson et al., 1997 ). Third, there is research evidence to show that the frontal lobes of the brain are clearly responsible for EF (Luria, 1966 ). However, minor insults to sections of the frontal lobes of the brain frequently result in deficits in EF but not IQ (Hebb, 1945 , 1949 ; Stuss & Benson,

of the brain frequently result in deficits in EF but not IQ (Hebb, 1945 , 1949 ; Stuss & Benson, 1984 ; Teuber, 1959 ). Thus, individuals with intact IQ are capable of demonstrating deficits in EF, providing evidence for their differentiation. In general, a positive relationship exists between EF and IQ in that tasks of EF typically require a base level of cognitive ability in order to succeed and vice versa. Indeed, common sense dictates that problems cannot be solved without EF. However, the

vice versa. Indeed, common sense dictates that problems cannot be solved without EF. However, the relationship between these two constructs is far from direct. EF is just one information processing component necessary for problem solving . Correlations between IQ and EF measures tend to be small to moderate, suggesting that many factors other than EF influence an individual’s IQ. Many individuals who demonstrate an EF deficit do not demonstrate a comparable IQ deficit. Similarly, insult to the

who demonstrate an EF deficit do not demonstrate a comparable IQ deficit. Similarly, insult to the regions of the brain associated with EF does not always impair g . Indeed, as succinctly pointed out by Duncan, Burgess, and Emslie ( 1995 ) ‘frontal patients have impaired “planning”, “problem solving”, etc. but preserved “intelligence”’ (p. 262).

Measurement of EF The relevance of EF to children and adolescents has been a topic of debate for many years (Toplak et al., 2013 ). This discussion has centred primarily around questions of the theoretical factor structure of the construct (i.e. is EF appropriately conceptualized as inhibition, working memory, and cognitive flexibility?; Miyake et al., 2000 ), the development of EF from infancy through to adolescence (i.e. is the theoretical factor structure stable throughout development?;

through to adolescence (i.e. is the theoretical factor structure stable throughout development?; Willoughby, Blair, Wirth, & Greenberg, 2010 ), and effective measurement processes (i.e. how can we appropriately measure EF abilities in children of various ages?; Willoughby, Wirth, & Blair, 2011 ). Regarding the latter, clinical practice and empirical literature indicate that EFs are generally measured via two approaches: Task or performance-based measures and/or rating scales (Toplak et al.,

via two approaches: Task or performance-based measures and/or rating scales (Toplak et al., 2013 ). Task-based approaches typically employ the use of standardized tasks designed to isolate and measure a specific EF ability. Some common measures used in childhood and adolescence are the Delis-Kaplan Executive Function System (DKEFS; Delis, Kaplan, & Kramer, 2001 ), the NEPSY-II (Korkman, Kirk, & Kemp, 2007 ), and the Wisconsin Card Sorting Task (WCST; Heaton, Chelune, Talley, Kay, & Curtis, 1993

2007 ), and the Wisconsin Card Sorting Task (WCST; Heaton, Chelune, Talley, Kay, & Curtis, 1993 ). Tasks are typically selected based upon the EF domain that they are purported to evaluate and performance is judged based on accuracy and/or speed of response in comparison to a norm- referenced group. This evaluative context is seen as supporting optimal EF performance as the examinee completes tasks designed to utilize a singular EF in a controlled environment. In contrast, rating scales require

designed to utilize a singular EF in a controlled environment. In contrast, rating scales require an informant (often a parent and/or a teacher) to judge the child’s challenges with common behaviours that require or utilize EF. The most common measures in this domain are the Behavior Rating Inventory of Executive Function (BRIEF; Gioia, Isquith, Guy, & Kenworthy, 2000 ) and the Comprehensive Executive Function Inventory (CEFI; Naglieri & Goldstein, 2013 ). Raters are asked to indicate the

Executive Function Inventory (CEFI; Naglieri & Goldstein, 2013 ). Raters are asked to indicate the frequency with which a child demonstrates a number of important behaviours that are related to or mediated by EF abilities. Scores are then compared to a norm-referenced comparison group. These scales thus attempt to provide an ecologically valid representation of a child’s competence with EF abilities. This evaluative context is seen as evaluating day-to-day EF performance as the individual is

This evaluative context is seen as evaluating day-to-day EF performance as the individual is not directed or instructed to engage in specific behaviours. Despite the use of these two forms of EF measurement, research has indicated that they likely do not assess EF in a cohesive manner (Toplak et al., 2013 ). Indeed, these two evaluative formats correlate poorly (rs ≈ 0.2). As such, it has been proposed that these two forms of assessment likely measure different aspects of EF, with task- based

that these two forms of assessment likely measure different aspects of EF, with task- based measures evaluating cognitive aspects of the construct, and rating scales measuring behavioural implementation of EF abilities. This position is supported by research that indicates that individuals who demonstrate EF impairment on rating scales (i.e. behavioural impairment) are often capable of adequate performance on task- based measures (Gioia, Isquith, & Kenealy, 2008 ). In general, clinicians and

performance on task- based measures (Gioia, Isquith, & Kenealy, 2008 ). In general, clinicians and researchers are advised that task-based and ratings scales are not interchangeable and can provide important and unique information about an individual’s EF abilities (Biederman et al., 2008 ).

Executive Function in ASD EF has received widespread attention within ASD literature for several years, largely due to the proposition that the invariance of ASD behaviours and rigidity could be explained as a primary impairment in executive control (Hughes & Russell, 1993 ; Ozonoff, Pennington, et al., 1991 ; Pellicano, 2012 ). Regardless of the heterogeneity of ASD, EF difficulties have been consistently demonstrated in many children, adolescents, and adults with ASD (Hughes, Leboyer, &

consistently demonstrated in many children, adolescents, and adults with ASD (Hughes, Leboyer, & Bouvard, 1997 ; Hughes, Plumet, & Leboyer, 1999 ). For example, several studies have reported that individuals with ASD perform significantly below typically developing matched controls on common EF measures of CF such as the Wisconsin Card Sorting Task (Ozonoff, 1997 ; Ozonoff, Pennington, et al., 1991 ; Ozonoff, Rogers, & Pennington, 1991 ; Verte, Guerts, Roeyers, Ooosterlaan, & Sergeant, 2006 ),

; Ozonoff, Rogers, & Pennington, 1991 ; Verte, Guerts, Roeyers, Ooosterlaan, & Sergeant, 2006 ), the Tower of Hanoi (Ozonoff, Rogers, et al., 1991 ), the Tower of London (Manjiviona & Prior, 1999 ; Verte et al., 2006 ), the Intradimensional- Extradimensional Set-Shift (ID/ED shift) task of the CANTAB (Hughes, Russell, & Robbins, 1994 ), and a local–global shifting task (Rinehart, Bradshaw, Moss, Brereton, & Tonge, 2001 ). It has been suggested that this pattern of reduced CF could be more

Brereton, & Tonge, 2001 ). It has been suggested that this pattern of reduced CF could be more commonly displayed as perseverative response patterns and as an inability to disengage from an object and shift from an external to an internal point of reference, resulting in difficulties relating to people in a social manner and engaging in conversation where the topic of discussion often changes over time (Hughes & Russell, 1993 ; Pellicano, 2012 ; Russell, Mauthner, Sharpe, & Tidswell, 1991 ).

time (Hughes & Russell, 1993 ; Pellicano, 2012 ; Russell, Mauthner, Sharpe, & Tidswell, 1991 ). Additional research has indicated impaired spatial working memory in individuals with ASD (Ozonoff & Jensen, 1999 ; Williams, Goldstein, Carpenter, & Minshew, 2005 ; Williams, Goldstein, & Minshew, 2006 ). However, these findings are not consistent, as other studies have failed to find evidence for impairment (Griffith, Pennington, Wehner, & Rogers, 1999 ; Ozonoff & Strayer, 2001 ; Russel, Jarrold, &

(Griffith, Pennington, Wehner, & Rogers, 1999 ; Ozonoff & Strayer, 2001 ; Russel, Jarrold, & Henry, 1996 ). Regarding IN, research has indicated that children and adolescents with ASD appear to demonstrate intact abilities in this domain when evaluated by common IN tasks (Hill, 2004a ). Researchers using the Stroop task, a classic measure of IN where participants are asked to say the colour of ink a word is printed in rather than reading the word (e.g. saying ‘blue’ when the word ‘green’ is

ink a word is printed in rather than reading the word (e.g. saying ‘blue’ when the word ‘green’ is written in blue ink), have reported no differences in performance between individuals with ASD and typically developing controls (Schmitz et al., 2006 ). This lack of difference in the realm of IN has also been demonstrated on a task of negative priming (Ozonoff & Strayer, 2001 ), a Go/No-Go task, and the Color-Word Interference Task (Ozonoff, Strayer, McMahon, & Filloux, 1994 ), a modification of

the Color-Word Interference Task (Ozonoff, Strayer, McMahon, & Filloux, 1994 ), a modification of the classic Stroop task with an added inhibition/switching task that increases task difficulty. However, research findings indicate that children with ASD present with impaired IN ability when required to inhibit a prepotent (or automatic) response (Hughes & Russell, 1993 ; Russell et al., 1991 ; Russell, Hala, & Hill, 2003 ).

Research has also demonstrated that certain EF components have been shown to distinguish ASD from other developmental conditions, such as AD/HD (Geurts, Verte, Oosterlann, Roeyers, & Sergeant, 2004 ; Ozonoff & Jensen, 1999 ). There have, however, been inconsistent research findings that have cast doubt on the executive dysfunction hypothesis as a primary problem in ASD, as it cannot explain all autistic symptomatology (Griffith et al., 1999 ; Yerys, Hepburn, Pennington, & Rogers, 2007 ). As

autistic symptomatology (Griffith et al., 1999 ; Yerys, Hepburn, Pennington, & Rogers, 2007 ). As such, researchers have suggested that we must shift away from the idea that there is a single framework that explains the causality of ASD, and instead focus on the underlying causes that encompass multiple atypicalities (Happé, Ronald, & Plomin, 2006 ). While there is evidence to suggest that executive dysfunction only acts as a primary cause for a subset of autistic symptomatology, it remains

dysfunction only acts as a primary cause for a subset of autistic symptomatology, it remains possible that the degree of difficulties in EF could possibly play a considerable role in the developmental outcomes of individuals with ASD including adaptive behaviour, social competence (e.g. theory of mind), joint attention, and academic successes (Hill, 2004b ; Pellicano, 2012 ). Therefore, regardless of whether EF is considered a primary cause or not, deficits are likely to put an individual with

of whether EF is considered a primary cause or not, deficits are likely to put an individual with ASD at risk for a poor developmental outcome (Pellicano, 2012 ). The challenge within the literature is to move from research that focuses on attributing symptomatology to executive dysfunction, and instead incorporating a developmental perspective (Geurts, de Vries, & Sanne, 2014 ) to better understand causality. It has been described that during both childhood and adulthood, individuals with ASD

causality. It has been described that during both childhood and adulthood, individuals with ASD display a broad range of EF deficits, but yet the developmental pattern of EF in ASD appears to be atypical (Happé, Booth, Charlton, & Hughes, 2006 ; Luna, Doll, Hegedus, Minshew, & Sweeney, 2007 ; Pellicano, 2010a ). For instance, in a recent longitudinal study the planning capacity of children with ASD improved at a faster rate than that of the typically developing children (Pellicano, 2010a ).

ASD improved at a faster rate than that of the typically developing children (Pellicano, 2010a ). These findings would suggest that at least certain EF deficits initially seen in ASD might improve over time (Geurts et al., 2014 ). However, there are many studies that indicate executive dysfunction that is still present in adulthood (Geurts & Vissers, 2012 ; Goldstein, Johnson, & Minshew, 2001 ; Hill & Bird, 2006 ), thus providing an atypical course of EF development in ASD over time. Moreover,

& Bird, 2006 ), thus providing an atypical course of EF development in ASD over time. Moreover, there have been several studies that have explored executive dysfunction over time, and their combined findings suggest that there are different developmental patterns for different aspects of EF within the ASD population (Griffith et al., 1999 ; Luna et al., 2007 ; Ozonoff & McEvoy, 1994 ). Therefore it is essential that future research focus on how and when EF develops in individuals with ASD, with a

is essential that future research focus on how and when EF develops in individuals with ASD, with a specific focus on EF deficits and how they develop with such a heterogeneous population.

Relation to Restricted and/or Repetitive Behaviours Challenges with CF are the most commonly and consistently reported in ASD, thought to underlie characteristic symptoms such as perseveration, stereotyped motor behaviour, intense and circumscribed interests, and an inability to be flexible with routine or change (Geurts et al., 2004 ; Hill, 2004a ; Ozonoff & Jensen, 1999 ). This deficit has been widely documented on the Wisconsin Card Sorting Task (WCST; Milner, 1963 ), which requires an

been widely documented on the Wisconsin Card Sorting Task (WCST; Milner, 1963 ), which requires an individual to generate novel ways in which to sort cards based on simple feedback, using CF to switch between unspoken rules. Individuals who persist on the WCST and are inflexible in their responses tend to have speech that may be difficult to interrupt, and rigid behaviours and routines that are commonly seen in ASD (Liss et al., 2001 ). Furthermore, studies have found links between repetitive

commonly seen in ASD (Liss et al., 2001 ). Furthermore, studies have found links between repetitive behaviours as measured on the Autism Diagnostic Observation Schedule (ADOS; Lord et al., 1999 ) and the Autism Diagnostic Interview (ADI; Le Couter et al., 1989 ) and CF in both children and adults with ASD (Lopez, Linoln, Ozonoff, & Lai, 2005 ; South, Ozonoff, & McMahon, 2007 ). In addition to CF, other core EFs have been investigated in relation to restricted and repetitive behaviours and

CF, other core EFs have been investigated in relation to restricted and repetitive behaviours and interests ( RRBIs ). Turner’s ( 1997 ) early work was influential in exploring and describing RRBIs in ASD. Her research found significant correlations between both IN and CF performance and repetitive behaviour as measured by a structured Repetitive Behaviour Interview . In an adult sample of individuals with ASD, Lopez and colleagues ( 2005 ) found all three core EF (IN, WM, and CF) abilities to be

with ASD, Lopez and colleagues ( 2005 ) found all three core EF (IN, WM, and CF) abilities to be negatively correlated with repetitive behaviour (as measured by interview, behaviour rating scale, and behavioural observation measures). Using an established behavioural rating scale of EF that included IN, CF, and emotional control subscales, Kenworthy and colleagues ( 2009 ) found a strong link between EF abilities (IN, CF, emotional control) and repetitive behaviours in their sample of children.

EF abilities (IN, CF, emotional control) and repetitive behaviours in their sample of children. The vast majority of the previous research used established neuropsychological task-based measures or behavioural ratings of EF-related behaviours. In an attempt to isolate EF subcomponents, Mosconi and colleagues ( 2009 ) utilized an antisaccade task to measure IN in relation to ASD RRBIs. An antisaccade task involves having an individual make a planned eye movement in the opposite direction of a

task involves having an individual make a planned eye movement in the opposite direction of a moving stimulus, counter to natural tendency. Mosconi and colleagues theorized that because previous research demonstrated deficits in IN when antisaccade tasks are used in an ASD population (Goldberg et al., 2002 ; Luna et al., 2007 ), the task may be sensitive to basic IN performance in the population. In comparison to controls, their sample of individuals with ASD ranging from 8 to 54 years of age

In comparison to controls, their sample of individuals with ASD ranging from 8 to 54 years of age made more IN errors on the task, and these errors were related to higher-order RRBIs. To clarify, the IN errors on the eye movement task were not related to repetitive motor movements, communication, or social symptoms. Instead, the authors suggest that higher-order RRBIs (e.g. insistence on sameness, preference for routine, intense interests) are a partial result of a fundamental brain-based

preference for routine, intense interests) are a partial result of a fundamental brain-based inability to use both IN and CF normally via fronto-striatal brain systems. Overall, the behavioural deficits encapsulated by RRBIs in ASD appear to be strongly linked to IN, WM, and CF. Particularly robust are the relationships to CF and IN performance both on neuropsychological and behavioural measures.

Relation to Social Communication Deficits The role of EF in general is to help with flexible problem solving, shifting between rules and behaviours, inhibiting behaviour, and coming up with alternate ways to find solutions to problems (Szatmari, Tuff, Finlayson, & Bartolucci, 1990 ). In regard to social communication, EF deficits theoretically underlie moment by moment planning in social contexts, shifting social behaviour or conversational topics, and holding social information in mind while

shifting social behaviour or conversational topics, and holding social information in mind while processing the ever- changing features of social interactions to form appropriate responses (Landa & Goldberg, 2005 ). For example, children with ASD have been reported to demonstrate significant EF impairments in the form of poor CF (inflexible and perseverative response styles) which have been found to be related to problems with joint attention. Joint attention is the natural tendency to follow the

be related to problems with joint attention. Joint attention is the natural tendency to follow the gaze of a social partner, and is significantly important in social interaction, communication, and social development (McEvoy, Rogers, & Pennington, 1993 ). In regard to specific EF abilities, some research has found significant correlations between IN (in combination with WM) and social abilities; however, these relationships become insignificant when the level of verbal ability of ASD children is

these relationships become insignificant when the level of verbal ability of ASD children is partialled out (Joseph & Tager- Flusberg, 2004 ). These results have been replicated in studies finding no relationships between IN deficits and social communication symptom severity using both task-based neuropsychological measures and behaviour rating measures of IN (Bishop & Norbury, 2005a , 2005b ; Kenworthy, Black, Harrison, Della Rosa, & Wallace, 2009 ). In a sample of children with ASD ranging from

Black, Harrison, Della Rosa, & Wallace, 2009 ). In a sample of children with ASD ranging from 7 to 17 years of age, Landa and Goldberg ( 2005 ) found no differences in performance on a CF task when compared to typically developing children; however, children with ASD performed worse on a spatial WM task that was related to social domain scores on the Autism Diagnostic Observation Schedule ( A DOS ; Lord, Rutter, DiLavore, & Risi, 1999 ). Likely the greatest support for a link between EF and

DOS ; Lord, Rutter, DiLavore, & Risi, 1999 ). Likely the greatest support for a link between EF and social communication deficits in ASD involves Theory of Mind (ToM; Kenworthy et al., 2009 ). ToM refers to the ability to infer others’ mental states , such as intentions, feelings, and beliefs (Baron-Cohen, 1988 ; Bauminger-Zviely & Kimhi, 2013 ; Levy, 2007 ; Shamay- Tsoory, Tomer, & Aharon-Peretz, 2005 ). Studies have shown that individuals with ASD have deficits in ToM (Kimbi, 2014 ) and perform

2005 ). Studies have shown that individuals with ASD have deficits in ToM (Kimbi, 2014 ) and perform lower on ToM tasks than typically developing individuals (Mathersul, McDonald, & Rushby, 2013 ; Peterson, Wellman, & Slaughter, 2012 ). In the ASD population, EF has indeed been shown to be related to ToM ability. Pellicano ( 2007 ) found correlations between general EF and ToM ability in children with ASD regardless of their age and verbal ability level. More specifically, support has been found

with ASD regardless of their age and verbal ability level. More specifically, support has been found for the importance of IN and WM for ToM, independent of language abilities (Joseph & Tager-Flusberg, 2004 ). Some results suggest that training EF could lead to ToM improvements and thus enhance social communication for those with ASD (Fisher & Happe, 2005 ).

EF and Theory of Mind ToM falls on a continuum of increasing complexity. For example, first-order ToM involves the ability to consider another person’s mental state (Miller & Marcovitch, 2012 ). First-order ToM understanding has often been tested using a false belief task where children must correctly predict a story character’s behaviour based on the character’s mistaken understanding (e.g. Wimmer & Perner, 1983 ). Second-order ToM tasks require children to predict a main character’s behaviour

& Perner, 1983 ). Second-order ToM tasks require children to predict a main character’s behaviour based on his/her understanding of a secondary character’s mistaken understanding (Baron- Cohen, Jolliffe, Mortimore, & Robertson, 1997 ). More advanced levels of ToM include examining more naturalistic conversations where the speaker’s intentions are ambiguous or inconsistent with his/her true intentions, and then asking participants about the speaker’s true beliefs and intentions (e.g. Faux Pas ,

and then asking participants about the speaker’s true beliefs and intentions (e.g. Faux Pas , Baron-Cohen, O’Riordan, Stone, Jones, & Plaisted, 1999 ; Strange Stories , Channon & Crawford, 2000 ; Stone, Baron- Cohen, & Knight, 1998 ). Among individuals with ASD, ToM is not believed to be absent; instead, it appears as though ToM abilities diverge from the normal trajectory and show variability among individuals (Kimbi, 2014 ). According to Frith’s ( 2012 ) meta-analysis, there is an approximate

individuals (Kimbi, 2014 ). According to Frith’s ( 2012 ) meta-analysis, there is an approximate 5 year delay for children with ASD with respect to passing the Sally Anne false belief task (a first-order ToM task) in comparison to typically developing children. Specifically, typically developing children exhibit this ability between 3 and 5 years of age (Broomfield, Robinson, & Robinson, 2002 ; Miller, 2009 ), whereas children with ASD pass this task at approximately age 9 (Frith, 2012 ). As

Miller, 2009 ), whereas children with ASD pass this task at approximately age 9 (Frith, 2012 ). As described above, second-order ToM involves the ability to consider a person’s beliefs about another person’s mental state, and children who are typically developing exhibit this ability between 5 or 6 years of age (Miller, 2009 ). Regarding more advanced ToM tasks (e.g. sarcasm and deception), individuals with High Functioning Autism Spectrum Disorder (HFASD) have been found to struggle on such

with High Functioning Autism Spectrum Disorder (HFASD) have been found to struggle on such tasks into adulthood (Mathersul et al., 2013 ). In contrast, Scheeren, de Rosnay, Koot, and Begeer ( 2013 ) discovered that among a range of advanced ToM tasks (e.g. faux pas; double bluff, sarcasm) children and adolescents with HFASD demonstrate intact advanced ToM abilities. According to these researchers, both verbal and reasoning abilities contributed to better ToM understanding among their sample;

both verbal and reasoning abilities contributed to better ToM understanding among their sample; however, it is important to note that others have indicated that such skills do not necessarily transfer to everyday situations (Bauminger-Zviely & Kimhi, 2013 ).

Interestingly, EF abilities are believed to play a key role in the emergence of ToM (Pellicano, 2013 ). Studies have shown predictive relations between EF and ToM in both typically developing individuals (Carlson, Moses, & Claxton, 2004 ; Hughes & Ensor, 2007 ; Moses & Tahiroglu, 2010 ) and individuals with ASD/HFASD (Kimhi, Kugelmas, Agam Ben Artzi, Ben Moshe, & Bauminger-Zviely, 2014 ; Pellicano, 2010b ). For example, Kimhi and colleagues ( 2014 ) discovered that CF and verbal abilities

2010b ). For example, Kimhi and colleagues ( 2014 ) discovered that CF and verbal abilities significantly predicted student’s performance on ToM tasks. Specifically, there are two ways in which EF is thought to impact ToM (Moses, 2001 ): EF may contribute to the ‘expression’ of ToM, or it may contribute to the ‘ emergence’ of ToM. According to the expression account, children possess ToM abilities, but have trouble demonstrating these abilities because of the EF demands that are imbedded within

but have trouble demonstrating these abilities because of the EF demands that are imbedded within ToM tasks (Carlson, Claxton, & Moses, 2013 ). Support for the expression account comes from studies demonstrating that 3-year olds’ performance increases when the EF components (e.g. IN) of the task are lessened (Carlson, Moses, & Hix, 1998 ; Leslie & Polizzi, 1998 ). On the other hand, an emergence account suggests that EF is essential in order for children to develop ToM (e.g. recognizing

account suggests that EF is essential in order for children to develop ToM (e.g. recognizing different people’s perspectives; Carlson et al., 2013 ). For example, if children have difficulty inhibiting their own wants and needs in a situation, they will not be able to appreciate others’ perspectives (Carlson et al., 2013 ). The emergence explanation has been supported by multiple longitudinal studies, which have reliably demonstrated that individual differences in EF predict later ToM abilities

which have reliably demonstrated that individual differences in EF predict later ToM abilities (rather than the reverse; e.g. Hughes & Ensor, 2007 ; Müller, Liebermann-Finestone, Carpendale, Hammond, & Bibok, 2012 ; Pellicano, 2010b ; Razza & Blair, 2009 ). Overall, individuals with ASD have difficulties with both EF and ToM, and EF is believed to play a key role in the emergence of ToM. As such, interventions that target EF abilities among children with ASD may subsequently facilitate the

interventions that target EF abilities among children with ASD may subsequently facilitate the development of ToM. To summarize, some evidence exists for the importance of spatial WM to social communication abilities in ASD; however, other direct results of specific EF abilities are mixed. The strongest link found thus far includes characteristic deficits in ToM that appear to be heavily reliant on the development of EF, specifically IN and WM.

Imaging/Brain Studies Another viewpoint suggests that there is a direct link between frontal lobe abnormality and executive dysfunction in children with ASD (Hill, 2004b ). It is suspected that autistic symptomatology could be associated with dysfunctional integration of the frontal lobe with the remainder of the brain, abnormal myelination, and/or abnormal development in neuronal maturation (Chugani, 1998 ; Hill, 2004b ; Luna et al., 2002 ). Other findings that support this viewpoint include

1998 ; Hill, 2004b ; Luna et al., 2002 ). Other findings that support this viewpoint include findings of transient delayed postnatal maturation of the frontal lobes in ASD, and reduced functional connectivity of the frontal cortex with other cortical and subcortical brain regions (Luna et al., 2002 ; Ohnishi et al., 2000 ; Zilbovicius et al., 1995 ). This viewpoint would posit that the failure of the frontal lobe to follow a normal maturation pattern leads to long-term consequences in

of the frontal lobe to follow a normal maturation pattern leads to long-term consequences in development, differentially reflected in the abnormal development of other connected systems (Hill, 2004b ). Results from studies of typically developing (TD) individuals indicate that many brain regions are required for the coordination of EF such as the orbitofrontal cortex and its connection to the amygdala, hypothalamus, subgenual cingulate gyrus, and others (Alvarez & Emory, 2006 ; Takeuchi et al.,

hypothalamus, subgenual cingulate gyrus, and others (Alvarez & Emory, 2006 ; Takeuchi et al., 2013 ). In general however, continued evidence supports the importance of the frontal lobes as the primary location for EF-related activity and coordination in the brain with connections projecting to many other areas (Olsen & Luciana, 2008 ; Roca et al., 2010 ; Stuss, 2011 ). Brain imaging has found general structural and functional deficits in frontal lobe performance in those with ASD (Girgis et al.,

structural and functional deficits in frontal lobe performance in those with ASD (Girgis et al., 2007 ; Schmitz et al., 2006 ). A recent review of neuroimaging in ASD by Philip and colleagues ( 2012 ) concluded that during the majority of EF tasks used, different brain functioning is observed when individuals with ASD are compared to a TD comparison group. In regard to IN, Schmitz and colleagues ( 2006 ) observed no performance differences between adults with ASD and a TD comparison group using

2006 ) observed no performance differences between adults with ASD and a TD comparison group using go/no-go and Stroop-based tasks. However, the ASD participants showed more prefrontal cortex activity, potentially indicating greater effort required, or inefficient brain function when inhibiting prepotent responses. Kana, Keller, Minshew, and Just ( 2007 ) observed similar results in their sample of ASD participants. Despite similar performance to TD controls on a go/no-go task, the ASD group had

ASD participants. Despite similar performance to TD controls on a go/no-go task, the ASD group had poor functional connectivity in fronto-striatal brain regions. Using an antisaccade task to assess IN, O’Hearn and others ( 2008 ) did see performance differences with the ASD group making more errors of IN. Moreover, the ASD group demonstrated decreased activity in fronto-parietal regions. The inconsistency of specific brain areas, and increased versus decreased activation, may be the result of

of specific brain areas, and increased versus decreased activation, may be the result of study composition (e.g., age, diagnoses, tasks used, sample size). Nevertheless, studies support altered brain function during IN tasks and the likelihood of increased effort required for typical cognitive and behavioural IN for individuals with ASD.

As WM is postulated to be important for social processing such as facial and emotional expressions (LoPresti et al., 2008 ; Phillips, Channon, Tunstall, Hedenstrom, & Lyons, 2008 ), there has been some attention given to brain functioning during WM tasks among individuals with ASD. In general, neuroimaging has revealed that a fronto-parietal network is the primary location for WM function in TD individuals (Barendse et al., 2013 ). During a visual-spatial WM task, no difference in task

in TD individuals (Barendse et al., 2013 ). During a visual-spatial WM task, no difference in task performance or brain function in the associated posterior parietal cortex was noted between ASD and TD controls (Palmer, 2002 ). However, less brain activity was noted for those with ASD in areas important to general WM in TD adolescents and adults, including the anterior cingulate, dorsolateral prefrontal cortex, and the caudate nucleus. The authors posit that a disruption in WM networks may be

cortex, and the caudate nucleus. The authors posit that a disruption in WM networks may be involved in WM performance for those with ASD (Silk et al., 2006 ). Other studies have produced similar results, showing that despite apparently similar WM task performance, underlying brain function is different than in TD samples, including reduced frontal-parietal functional connectivity and reduced activity in the superior and middle gyri and right posterior temporal lobes, areas particularly

activity in the superior and middle gyri and right posterior temporal lobes, areas particularly important in WM processing of social information (Koshino et al., 2008 ). Few studies have focused on isolating CF in relation to brain function. Using a novel CF task in which participants had to switch between classifying letters based on their shape depending on the colour they were presented in, ASD participants showed similar behavioural performance to TD controls. However, similar to other

ASD participants showed similar behavioural performance to TD controls. However, similar to other neuroimaging research during EF tasks, underlying brain function was different. Individuals with ASD showed increased medial prefrontal cortex, parietal, temporal, and cerebellar region activation (Gilbert, Bird, Brindley, Frith, & Burgess, 2008 ). With a modified and simplified version of the WCST (measuring CF), Shafritz, Dichter, Baranek, and Belger ( 2008 ) found that ASD participants performed

CF), Shafritz, Dichter, Baranek, and Belger ( 2008 ) found that ASD participants performed worse than TD controls. Moreover, brain regions observed in Gilbert and colleagues’ ( 2008 ) study were also atypically engaged. The authors suggest that reduced activation in areas underlying CF ability may reflect a global neural processing deficit that is unique to ASD, involving ineffective strategies for switching ongoing behavioural responses. As the majority of research on EF and brain correlates

for switching ongoing behavioural responses. As the majority of research on EF and brain correlates focuses on adolescents and adults with ASD, Yerys and colleagues ( 2015 ) targeted their study of CF towards a sample of 7–14 year-olds. Using a novel task designed to tap CF while minimizing other EF requirements (e.g. attention, WM, IN), they found comparable results to older sample sizes. Specifically, behavioural performance was minimal between groups; however, the ASD children recruited more

behavioural performance was minimal between groups; however, the ASD children recruited more activation in frontal brain regions.

Studies using diffusion tensor imaging suggest that in addition to localized differences, more globalized deficits are present in ASD, such as inadequate connectivity within the frontal lobe and between the frontal cortex and other brain regions important to EF (Cheng et al., 2010 ; Groen, Buitelaar, van der Gaag, & Zwiers, 2011 ; Shukla, Keehn, & Muller, 2011 ; Shukla, Keehn, Smylie, & Muller, 2011 ). The corpus callosum, responsible for interhemispheric communication and higher cognitive

2011 ). The corpus callosum, responsible for interhemispheric communication and higher cognitive functions such as EF, has received increasing attention in ASD. Studies have found reduced size of the corpus callosum as well as low white matter density required for normal connectivity (Chung, Dalton, Alexander, & Davidson, 2004 ; Harden, Minshew, & Keshavan, 2000 ; Vidal et al., 2003 ). Using the Tower of London task to assess planning, IN, WM, and CF simultaneously, Just and colleagues ( 2007 )

of London task to assess planning, IN, WM, and CF simultaneously, Just and colleagues ( 2007 ) indeed found reduced connectivity between frontal and parietal regions, as well as between associated areas, in opposing hemispheres mediated by the corpus callosum. In summary, research findings support both structural and functional differences in how individuals with ASD employ EF during traditional tasks. Primary activity differences are observed in the prefrontal cortex, sections of the corpus

tasks. Primary activity differences are observed in the prefrontal cortex, sections of the corpus callosum, fronto-striatal, and fronto-parietal regions. Though more research is needed to understand the significance of these findings, most researchers believe that the observed differences reflect inefficient brain function and increased effort required for ASD individuals to carry out typical EF reliant tasks and behaviours.

Intervention for EF in ASD To date, there are limited EF interventions specifically designed for individuals with ASD. However, there are a number of interventions that target anxiety and social skills within this population using a cognitive behavioural therapy (CBT) approach (Dawson & Burner, 2011 ), which also appear to target EF skills (e.g. problem solving; Bauminger, 2002 ; Stichter, O’Connor, Herzog, Lierheimer, & McGhee, 2012 ). However, these are not considered EF interventions per se.

Herzog, Lierheimer, & McGhee, 2012 ). However, these are not considered EF interventions per se. Promisingly, a recently developed EF intervention designed for children with ASD, Unstuck and On Target (UOT), has shown positive results (Kenworthy et al., 2014 ). UOT is an intervention that can be implemented in both school and home environments, and it targets EF skills such as flexibility, goal setting, and planning. UOT is a cognitive- behavioural program consisting of self- regulation scripts,

and planning. UOT is a cognitive- behavioural program consisting of self- regulation scripts, scaffolding, and visual/verbal cueing. Using a randomized controlled effectiveness trial, Kenworthy and colleagues ( 2014 ) found support for the effectiveness of the UOT intervention among children with ASD. Specifically, students with ASD showed significantly more improvements in problem solving, flexibility, planning/organization, rule following, and transitions, than a comparison group who received a

planning/organization, rule following, and transitions, than a comparison group who received a social skills intervention. Nevertheless, these researchers indicated that more studies are required to address questions regarding the ability to streamline this lengthy intervention, and to examine other components of the intervention (e.g. features of interventionists that affect outcomes). Overall, there are a variety of books and resources available that target EF development among children and

there are a variety of books and resources available that target EF development among children and adolescents; however, more research is needed that focuses specifically on EF interventions for individuals with ASD. The following section describes a variety of strategies that exist to improve EF abilities among children and adolescents in both home and school settings, which are not specific to ASD. Specifically, at home, parenting practices such as scaffolding and structured discipline have been

Specifically, at home, parenting practices such as scaffolding and structured discipline have been found to support EF development. Scaffolding consists of parents providing support, while also instilling independence in their children to help them reach their goals. Structured discipline, on the other hand, refers to the practice of maintaining consistency with respect to reward and punishment, in order to ensure that children are reinforced for good behaviour and receive consequences for

in order to ensure that children are reinforced for good behaviour and receive consequences for negative behaviour (Hughes & Ensor, 2009 ; Rhoades, Greenberg, Lanza, & Blair, 2011 ). Although no known formal interventions have been developed, early EF difficulties among preschoolers may be improved by identifying maladaptive parenting practices, and by implementing consistent discipline, scaffolding, and modelling to support the development of EF abilities (Anderson & Reidy, 2012 ).

Moreover, regular aerobic activity has been found to improve EF and prefrontal cortex activity among children and adults (Chaddock, Pontifex, Hillman, & Kramer, 2011 ; Hillman, Erickson, & Kramer, 2008 ). Among children in particular, intervention outcomes have been small but significant, suggesting that children between the ages of 7 and 12 years may show improvements in WM and CF after taking part in fitness training for a few days per week for 60–120 min per day (Davis et al., 2011 ; Kamijo

part in fitness training for a few days per week for 60–120 min per day (Davis et al., 2011 ; Kamijo et al., 2011 ; Tuckman & Hinkle, 1986 ). Furthermore, studies have found that martial arts training improves WM capacities and CF, likely because of the behavioural monitoring components of this sport. Importantly, these improvements have been shown to transfer to classroom conduct, and remain significant even when controlling for the aerobic aspects of martial arts (Lakes & Hoyt, 2004 ; Trulson,

even when controlling for the aerobic aspects of martial arts (Lakes & Hoyt, 2004 ; Trulson, 1986 ). Also, the effects of mindfulness training have shown promise with respect to improving EF abilities. In a study of 7–9 year-olds practicing mindfulness techniques (e.g., meditation, body awareness, attention regulation), parents and teachers rated significant improvements among child participants’ EF as a result of the mindfulness practices (Flook et al., 2010 ).

Within the classroom setting, teachers may target EF development via specific curriculum add-ons, or the use of individualized strategies. Three examples of curricula shown to improve EF include Tools of the Mind (TOOLS; Bodrova & Leong, 2007 ), Promoting Alternative Thinking Strategies (PATHS; Kusche & Greenberg, 1994 ), and the EF Curriculum Series (Boseday, Gidaspow, Minton, & Smith, 2010 ). Moreover, there are a vast number of individual strategies that can be used in the classroom in order

there are a vast number of individual strategies that can be used in the classroom in order to accommodate student differences in EF abilities (Winters, Altomare, Colp, & Matchullis, 2015 ). For example, to target IN, teachers can place visual cues on desks (e.g., ‘stop and think!’), use nonverbal cues (e.g., raised hand; finger to nose), or establish sounds with individual students that serve as a cue. Additionally, students who struggle with IN (e.g., blurting out answers) may benefit from

as a cue. Additionally, students who struggle with IN (e.g., blurting out answers) may benefit from universal classroom strategies, such as having all students use small white boards to write down their answers to show the teacher. Moreover, students who struggle with CF may have trouble transitioning to different activities (e.g., from gym to math). Teachers can assist these students by making classroom routines and activities clear and accessible in advance (e.g., visual schedules), with

classroom routines and activities clear and accessible in advance (e.g., visual schedules), with reminders or warnings throughout the day (e.g., ‘In 10 minutes, when this timer goes off, it is time to put our books away’). If students struggle to switch between rule sets (e.g., in math), thé use of visual reminders and charts can be useful to accommodate such challenges. Additionally, teachers can help students with WM deficits by breaking down complex tasks into smaller steps, and reminding

can help students with WM deficits by breaking down complex tasks into smaller steps, and reminding students to write down steps (e.g., display math work, plan out writing in advance using graphic organizers, take notes while reading to ensure comprehension). The general strategy for WM is to have teachers reduce the amount of information that a student must hold in their mind, which can be done without reducing the overall complexity of the task (Winters et al., 2015 ). Finally, computerized

without reducing the overall complexity of the task (Winters et al., 2015 ). Finally, computerized training has been explored in both school and home settings as a possible method for improving a variety of EF abilities. The appeal of computerized training is not surprising given the increasing role of technology in today’s society (Otero, Barker, & Naglieri, 2014 ). The primary focus of computerized training programs, such as CogMed , has been to improve working memory and general attention.

training programs, such as CogMed , has been to improve working memory and general attention. Using repeated practice and reinforcement, these programs aim to produce structural brain changes to improve WM capacity (Klingberg et al., 2005 ). This modality is an attractive approach to improve EF, especially due to the possibility of delivering interventions in a group setting, as well as the reduction of human error in implementation (Otero et al., 2014 ). Despite the fact that WM has been shown

of human error in implementation (Otero et al., 2014 ). Despite the fact that WM has been shown to improve as a result of computerized training (Bergman-Nutley et al., 2011 ; Wong, He, & Chan, 2014 ), a relatively recent meta-analysis by Melby-Lervag and Hulme ( 2013 ) indicated that there appears to be little generalization to other areas of cognitive or academic performance using computerized training (despite improving IN and WM on the tasks used to teach the skills). Nevertheless, due to

training (despite improving IN and WM on the tasks used to teach the skills). Nevertheless, due to the appeal of computerized training and its ease of use and availability (e.g., tablets, phones, computers), research in this area continues to develop.

Implications of Research Findings and Future Directions In summary, research has demonstrated that there are both structural and functional differences in how individuals with ASD employ EF during traditional tasks, with primary activity differences observed in the prefrontal cortex, corpus callosum, fronto-striatal, and fronto-parietal brain regions. Although more research is necessary to better understand the importance of current imaging and brain research in this area, researchers

to better understand the importance of current imaging and brain research in this area, researchers currently believe that the observed EF differences among individuals with ASD reflect inefficient brain function and increased effort required for typical EF reliant tasks. However, it is important to highlight that ASD cannot be described as a primary disorder of EF (Geurts et al., 2014 ), as: (1) not all individuals with ASD display EF deficits, or the same deficits, and (2) executive dysfunction

not all individuals with ASD display EF deficits, or the same deficits, and (2) executive dysfunction can also occur in individuals without ASD. Regardless, EF has been shown to play a significant role in social communication abilities, ToM, and the behavioural deficits encapsulated by RRBIs in ASD, and thus should not be ignored. Moving forward, it will be essential for researchers to continue to identify individuals with ASD who struggle with EF, as well as those individuals who show strengths in

individuals with ASD who struggle with EF, as well as those individuals who show strengths in EF. This distinction will be essential in determining the best ways to intervene, and which interventions are most suitable for each specific individual (Geurts et al., 2014 ). While there are limited EF interventions specifically designed for individuals with ASD, there are a number of interventions that indirectly target EF development. There are also a variety of books, resources, and strategies

that indirectly target EF development. There are also a variety of books, resources, and strategies available that address EF development among children; however, more research is needed that focuses specifically on EF interventions for individuals with ASD. It will be important that intervention tools such as Unstuck and On Target (UOT) continue in their development to better and more effectively intervene with these individuals and determine any other components of the intervention that may

intervene with these individuals and determine any other components of the intervention that may affect positive outcomes. Overall, our understanding of EF in ASD has evolved over the past 15 years, but more research is needed to better understand EF in ASD across the lifespan. It has been shown that there is significant variability in the developmental outcomes of individuals with ASD, yet empirical knowledge on the underlying causes of this disorder and its variability is beginning to emerge

knowledge on the underlying causes of this disorder and its variability is beginning to emerge (Pellicano, 2012 ). Although the executive dysfunction hypothesis has been initially presented as a primary deficit in ASD, it cannot explain the heterogeneity of ASD symptomatology (Yerys et al., 2007 ). Thus, researchers have moved away from a framework that suggests EF as the sole underlying cause, and instead strive to develop a richer understanding of the development and growth of EF in ASD.

and instead strive to develop a richer understanding of the development and growth of EF in ASD. Tackling this challenge will not be easy and will require careful study to determine effects on functional outcomes for children with ASD, which may have importance for children with other developmental disabilities and typically developing children.

Introduction Neuropsychological assessment and neuroimaging are two methods of understanding brain–behavior relationships in ASD. Although these methods are not used frequently in individual assessment, the results of studies using these techniques have yielded numerous insights into ASD. By identifying a large number of neuropsychological functions impaired in ASD, as well as a large number of brain regions associated with ASD, both techniques have highlighted the complexity of ASD in its

of brain regions associated with ASD, both techniques have highlighted the complexity of ASD in its relationship to many different neural systems (Dawson, 1996 ; Via, Radua, Cardoner, Happé, & Mataix-Cols, 2011 ). It is hoped that a better understanding of neural functioning in autism and the ability to measure neural functioning on an individual basis will lead to future improvements in diagnosis and treatment (Ecker, Bookheimer, & Murphy, 2015 ).

Neuropsychological Assessment Neuropsychological assessment includes the assessment of a number of different cognitive functions including verbal and visuospatial reasoning, attention, memory, processing speed, learning, memory, and motor functioning (Larrabee, 2014 ). In assessing ASD, intellectual and language functioning are often assessed as these impairments are listed as two specifiers of ASD in the DSM-5 (American Psychiatric Association, 2013 ). The assessment of these domains is

of ASD in the DSM-5 (American Psychiatric Association, 2013 ). The assessment of these domains is important as they commonly occur in ASD and are associated with functional outcomes (e.g., Ozonoff, Goodlin-Jones, & Solomon, 2005 ). In addition, many other neuropsychological functions have been studied in ASD and results have shown that pattern of neuropsychological impairment can vary significant across individuals (Tonn & Obrzut, 2005 ). At the group level, performance of individuals with ASD

across individuals (Tonn & Obrzut, 2005 ). At the group level, performance of individuals with ASD is clearly distinguishable from other developmental conditions (Minshew, Muenz, Goldstein, & Payton, 1992 ). Given the time and cost of neuropsychological assessment, it is often recommended only when understanding an individual’s cognitive strengths and weaknesses would be useful to answer a specific referral question and guide treatment or educational planning (Klin, Saulnier, Tsatsanis, &

specific referral question and guide treatment or educational planning (Klin, Saulnier, Tsatsanis, & Volkmar, 2005 ). Ozonoff et al. ( 2005 ) give the example of problems with executive functioning leading to behavioral problems that affect school performance. Neuropsychological functioning is also related to symptoms of ASD and may suggest underlying neuropsychological impairments related to symptom expression. For example, performance on neuropsychological tasks of reward learning is

to symptom expression. For example, performance on neuropsychological tasks of reward learning is associated with joint attention (Dawson et al., 2002 ). It is important to note that although neuropsychological deficits in many domains have been linked to ASD, many areas of functioning commonly show little or no deficits when studied at a group level. Within a domain of functioning, certain abilities are often shown to be intact. For example, within the domain of memory functioning , in addition

are often shown to be intact. For example, within the domain of memory functioning , in addition to areas of deficit, normal performance has been found on tasks of recognition memory and memory for frequently repeated information (Bennetto, Pennington, & Rogers, 1996 ; Sanders, Johnson, Garavan, Gill, & Gallagher, 2008 ). Within the domain of attention, normal performance has been found on measures of sustained attention despite deficits in the ability to orient attention to new stimuli (Sanders

of sustained attention despite deficits in the ability to orient attention to new stimuli (Sanders et al., 2008 ). In individuals with ASD without language impairment, aspects of phonological processing and syntax are found to be intact despite deficits in social communication (Dawson, 1996 ; Happé & Frith, 1996 ).

Within the domain of intellectual performance, visuospatial reasoning may be intact with concurrent impairments in verbal ability (e.g., Ozonoff, Pennington, & Rogers, 1991 ). Given normal performance in ASD on a frequently used nonverbal measure of fluid intelligence, the appropriateness of commonly used measures of intellectual functioning which find impairments in ASD has been questioned (Nader, Courchesne, Dawson, & Soulières, 2014 ). However, it has been noted that deficits found in more

Courchesne, Dawson, & Soulières, 2014 ). However, it has been noted that deficits found in more comprehensive measures of intellectual functioning that include verbal abilities are likely capturing actual communication deficits in ASD (Schneider, 2014 ). Furthermore, the size of the discrepancy between verbal and nonverbal abilities can be clinically useful; for example, it is related to social functioning (Joseph, Tager‐Flusberg, & Lord, 2002 ). Intellectual functioning in ASD is reviewed more

(Joseph, Tager‐Flusberg, & Lord, 2002 ). Intellectual functioning in ASD is reviewed more comprehensively in Chap. 21 of this volume. ASD is associated with impairments in different aspects of executive functioning, including set shifting and inhibition (Sanders et al., 2008 ). These deficits can be found in both children and adults with ASD and are not attributable to low intellectual functioning (e.g., Ozonoff et al., 2004 ). Clinical assessment of these functions may be useful as they are

(e.g., Ozonoff et al., 2004 ). Clinical assessment of these functions may be useful as they are associated with adaptive functioning (e.g., Ozonoff et al., 2004 ). Rating scales of real-world executive functioning deficits have some utility in distinguishing between individuals with and without ASD (Leung & Zakzanis, 2014 ). Executive functioning in ASD is also associated with symptoms of repetitive behavior and restricted interests (Lopez, Lincoln, Ozonoff, & Lai, 2005 ). Executive functioning

behavior and restricted interests (Lopez, Lincoln, Ozonoff, & Lai, 2005 ). Executive functioning is reviewed more comprehensively in Chap. 23 of this volume. Memory deficits in ASD have been found on tasks of working memory, short term memory, and long term memory (Bennetto et al., 1996 ; Dawson, 1996 ) although not all studies consistently find impairments in all of these domains (Tonn & Obrzut, 2005 ). Memory for social information, such as faces, is associated with ASD (Barron-Linnankoski et

2005 ). Memory for social information, such as faces, is associated with ASD (Barron-Linnankoski et al., 2015 ; Korkman, Kirk, & Kemp, 1998 ). In one study, poor spatial working memory was found to discriminate between individuals with and without ASD (Williams, Goldstein, & Minshew, 2006 ). Among the various theories to describe the neuropsychological deficit in ASD is one that identifies the core neuropsychological deficit in ASD as a generalized deficit in processing and integrating complex

core neuropsychological deficit in ASD as a generalized deficit in processing and integrating complex information (Minshew & Goldstein, 1998 ). As evidence for this theory, Minshew, Goldstein, and colleagues have shown in multiple studies that within and across domains of cognitive functioning, individuals with ASD are impaired on complex tasks, but can show intact performance on simple tasks (e.g., Minshew et al., 1992 ; Minshew & Goldstein, 2001 ; Williams et al., 2006 ). This deficit in

(e.g., Minshew et al., 1992 ; Minshew & Goldstein, 2001 ; Williams et al., 2006 ). This deficit in processing complex information has been hypothesized to contribute to real-world functional impairment (Williams, Goldstein, & Minshew, 2006 ).

Brain Structure Abnormalities in ASD Studies of brain structure in ASD have yielded numerous, often conflicting results (Via et al., 2011 ). In aggregate, the findings seem to highlight a complex and multidimensional set of differences in grey and white matter in a number of different regions throughout the brain (Ecker et al., 2010 ). Differences across studies in factors such as the ages of participants, gender of participants, level of functioning, and comparison group used (e.g., typically

gender of participants, level of functioning, and comparison group used (e.g., typically developing or other developmental disorder) may account for some of the heterogeneity found within the literature (Brieber et al., 2007 ; Freitag et al., 2009 ; Schumann et al., 2010 ). Differences may also arise from factors which differ across research sites in scanning technology (e.g., magnetic field strength) and implementation (e.g., length of scan, instructions given to participants) (Nielsen et al.,

and implementation (e.g., length of scan, instructions given to participants) (Nielsen et al., 2013 ).

Total Brain Volume One of the most widely replicated neuroimaging findings in ASD is larger brain volumes occur in those with ASD compared to those with typical development. Meta-analyses of these studies show this increase to be widespread, with increased volume found in both cerebral hemispheres, the cerebellum, and the caudate (Redcay & Courchesne, 2005 ; Stanfield et al., 2008 ). Not all regions show increased volume; for example, the corpus callosum has been found to be reduced in volume in

show increased volume; for example, the corpus callosum has been found to be reduced in volume in persons with ASD (Frazier & Hardan, 2009 ; Stanfield et al., 2008 ). Gender differences in volume have been found with females showing greater increases in volume (Schumann et al., 2010 ; Stanfield et al., 2008 ). Larger increases are also associated with lower intellectual functioning (Freitag et al., 2009 ). Age appears to be an especially important factor in understanding brain volume in ASD.

al., 2009 ). Age appears to be an especially important factor in understanding brain volume in ASD. Abnormal, accelerated growth appears to peak by age two with continuing growth patterns in childhood matching those of typically developing children (Hazlett et al., 2011 ; Schumann et al., 2010 ).

Whole-Brain Voxel-Based Morphometry Studies In addition to examining whole brain volume or predefined regions of interest, neuroimaging research in ASD has also used voxel-based morphometry (VBM) , a technique in which differences in brain volume across the entire brain can be compared between two groups (Mechelli, Price, Friston, & Ashburner, 2005 ). At least two recent meta-analyses of VBM studies have been conducted which included partially overlapping, but not identical sets of studies

studies have been conducted which included partially overlapping, but not identical sets of studies (Cauda et al., 2011 ; Nickl-Jockschat et al., 2012 ). Both meta- analyses found a number of areas of increased or decreased volume in ASD throughout the brain, highlighting the complexity of the neural correlates of ASD. For example, both found increased volume in voxels within the cerebellum, a region involved in motor functioning, and precuneus , a region involved in visuospatial processing and

involved in motor functioning, and precuneus , a region involved in visuospatial processing and the default mode network, a network of brain regions that have been shown to be active and functionally coupled at rest in healthy participants, As with total brain volume, age again appears to be an important factor in understanding differences in volume of specific brain regions and is likely one source of heterogeneity in VBM findings (Nickl-Jockschat et al., 2012 ). Longitudinal studies of ASD have

of heterogeneity in VBM findings (Nickl-Jockschat et al., 2012 ). Longitudinal studies of ASD have found evidence for a period of overgrowth prior to age two, accelerated decline in cortical thickness in later childhood, and reduced decline in adulthood (Zielinski et al., 2014 ). However, this general pattern varies both within and across brain regions. Notably, changes in volume over time are associated with changes in ASD symptoms (Hardan, Libove, Keshavan, Melhem, & Minshew, 2009 ). Volume

with changes in ASD symptoms (Hardan, Libove, Keshavan, Melhem, & Minshew, 2009 ). Volume differences in specific regions are also associated with specific symptoms; for example, amygdala volume is associated with social and communication symptoms (Schumann, Barnes, Lord, & Courchesne, 2009 ). Given the heterogeneity in neuroimaging findings in ASD, some have investigated whether or not these differences may be related to differences in the individuals with ASD included in each study. Results have

may be related to differences in the individuals with ASD included in each study. Results have been mixed, with some finding minimal differences between individuals with and without a history of delayed language (e.g., Kwon, Ow, Pedatella, Lotspeich, & Reiss, 2004 ) and others finding a larger pattern of differences (e.g., McAlonan et al., 2008 ). A meta- analysis of ASD categorizing studies by the proportion of individuals in the study with a history of delay in language acquisition found that

proportion of individuals in the study with a history of delay in language acquisition found that fewer differences in volume in the ASD studies with higher proportion of individuals with a normal language history (Yu, Cheung, Chua, & McAlonan, 2011 ). However, when differences were found, they did not always overlap with regional differences between those with a history of language delay and typically developing children. One study comparing groups with ASD symptoms, but varying in impairment

developing children. One study comparing groups with ASD symptoms, but varying in impairment in intellectual functioning and history of language acquisition, found evidence for a continuum of differences in brain volume consistent with including individuals with these different impairments under the umbrella of ASD (Lotspeich et al., 2004 ).

Classification Studies Given the findings of differences in brain volume in ASD, several researchers have attempted to use differences in volume and other structure differences as a method of diagnostic classification . These studies most often apply machine learning techniques to a sample of individuals with ASD and without ASD in an effort to see how well the groups can be distinguished based on a generated algorithms specific to the study. Using a support vector machine approach, areas of

on a generated algorithms specific to the study. Using a support vector machine approach, areas of increased and decreased volume were able to correctly classify 85 % of adults diagnosed with high-functioning ASD or no psychiatric condition. Two out of 20 individuals with ASD were misclassified in the no diagnosis group and 4 out of 20 individuals without ASD were misclassified as having ASD. Applying this same classification algorithm to a comparison of the same ASD sample with a sample of

Applying this same classification algorithm to a comparison of the same ASD sample with a sample of individuals with ADHD, high accuracy was maintained, with 4/19 individuals with ADHD being misclassified as having ASD (Ecker et al., 2010 ). The same technique was also able to successfully classify individuals with ASD or no psychiatric diagnosis in a sample of female children (Calderoni et al., 2012 ). Additional studies using other machine learning techniques have also demonstrated high

al., 2012 ). Additional studies using other machine learning techniques have also demonstrated high classification accuracy: 90 % in a sample of children and adolescents with ASD compared to other without a psychiatric diagnosis (Uddin et al., 2011 ) and 87 % in a sample of children with ASD compared to those without a psychiatric diagnosis (Jiao et al., 2010 ). In general, these studies find higher sensitivity (i.e., accuracy in classifying those with ASD as having ASD) than specificity (i.e.,

sensitivity (i.e., accuracy in classifying those with ASD as having ASD) than specificity (i.e., accuracy in classifying those without ASD as not having ASD). The regions used as part of the classification algorithms have included parts of the frontal, temporal, parietal, and occipital lobes as well as subcortical structures such as the thalamus and cingulate (Calderoni et al., 2012 ; Ecker et al., 2010 ; Jiao et al., 2010 ). Given structural differences found across studies, it is unclear to

2010 ; Jiao et al., 2010 ). Given structural differences found across studies, it is unclear to what extent results from classification studies will replicate in new samples; studies have often developed an algorithm based on the data in their sample rather than testing previously developed algorithms. Most studies have used a comparison group of individuals without any psychiatric diagnosis and at least one study has found lower rates of successful classification of ASD vs. other developmental

at least one study has found lower rates of successful classification of ASD vs. other developmental disorders (Neeley et al., 2007 ).

Structural and Functional Connectivity While many functional imaging studies have focused on the disruption of individual brain regions such as the amygdala and prefrontal cortex, a substantial amount of research has supported the notion that large-scale structural and functional connectivity between networks of neural systems is altered in ASD. In fact, some have called ASD a “developmental disconnection disorder” (Geschwind & Levitt, 2007 ). Here, we review findings related to altered

disconnection disorder” (Geschwind & Levitt, 2007 ). Here, we review findings related to altered structural and functional connectivity in ASD, and how these disruptions might relate to behavioral outcomes.

Structural Connectivity Structural connectivity, or the analysis of the anatomical connections between brain regions, is typically measured using diffusion tensor imaging ( D TI). DTI measures the diffusion of water within tissues. DTI provides a measurement of the integrity of white matter pathways by measuring the diffusion of water molecules along axons, as axonal tracts restrict the diffusion of water, while diffusion in grey matter is less restricted (Mori & Zhang, 2006 ). The most

of water, while diffusion in grey matter is less restricted (Mori & Zhang, 2006 ). The most commonly used DTI measurement is fractional anisotropy (FA), which measures the directional dependency of water diffusion in the brain, with higher values representing more diffusion directionality. Conversely, lower FA values are believed to reflect decreased organization and integrity of white matter fiber tracts. Consistently across studies, whole-brain analyses have found lower FA values for adults

tracts. Consistently across studies, whole-brain analyses have found lower FA values for adults with ASD (Shukla, Keehn, & Müller, 2011 ). However, there have also been regional and age dependent differences reported. In adults, the most consistent reports of under-connectivity have been in the corpus callosum and frontal and temporal regions; both believed to contribute to social processing deficits (Alexander et al., 2007 ; Jou et al., 2011 ). Disruptions in the corpus callosum may impact

deficits (Alexander et al., 2007 ; Jou et al., 2011 ). Disruptions in the corpus callosum may impact overall processing and connectivity between the hemispheres, but may also play a role in social skills. Individuals born with agenesis of the corpus callosum, where the corpus callosum does not develop properly, often have similar impairments in social skills as individuals with ASD (Paul et al., 2007 ). Furthermore, lower FA values in frontal and temporal regions have been reported in multiple

2007 ). Furthermore, lower FA values in frontal and temporal regions have been reported in multiple studies (Barnea-Goraly et al., 2004 ; Cheung et al., 2009 ). Overall, lower FA in these regions correlated with more severe diagnostic symptoms on the Autism Diagnostic Interview—Revised (ADI-R) (Cheung et al., 2009 ). There is also evidence for disruptions in white matter tracts related to language processing, including the arcuate fasciculus (Fletcher et al., 2010 ; Knaus et al., 2010 ). DTI

processing, including the arcuate fasciculus (Fletcher et al., 2010 ; Knaus et al., 2010 ). DTI based structural differences in temporal regions, including superior temporal gyrus and temporal stem, have been successfully used to classify individuals with ASD with 92 % accuracy, and are strongly correlated with measures of language and IQ (Lange et al., 2010 ). Another study found that DTI data, specifically connectivity pathways from fusiform face area, middle temporal gyrus, and other regions

specifically connectivity pathways from fusiform face area, middle temporal gyrus, and other regions of the social brain were also able to classify participants with 95.9 % accuracy (Deshpande, Libero, Sreenivasan, Deshpande, & Kana, 2013 ). Researchers suggests that structural connectivity in ASD changes across development. In fact, unlike adults who have reduced FA values globally, very young children with ASD (under 4 years of age) are reported to have higher FA values compared to healthy

children with ASD (under 4 years of age) are reported to have higher FA values compared to healthy comparison groups (Ben Bashat et al., 2007 ; Weinstein et al., 2011 ). Further evidence for developmental changes in white matter comes from a longitudinal study with high-risk infants who have siblings diagnosed with ASD (Wolff et al., 2012 ). DTI data were assessed at 6 months and again at 24 months. Children who met diagnostic criteria for ASD at 24 months displayed higher FA values across

months. Children who met diagnostic criteria for ASD at 24 months displayed higher FA values across multiple fiber tracts at 6 months relative to those who did not meet criteria. Furthermore, the children who met criteria for ASD had blunted developmental trajectories in white matter development, resulting in lower FA values at 24 months compared to those who did not meet criteria. Researchers have speculated that increased FA early in life may reflect an excess of axonal fibers and lack of

have speculated that increased FA early in life may reflect an excess of axonal fibers and lack of pruning of neuronal connections (Wolff & Piven, 2013 ).

Functional Connectivity Functional MRI (fMRI) can be used to measure brain activation in different areas of the brain either during a task (task-related) or while at rest (resting state). Functional connectivity represents the synchronization, or temporal correlation, of fMRI activity in different regions in the brain. Overall, studies seem to support the idea that ASD is characterized by long-range functional under-connectivity of different brain regions while local over-connectivity is

functional under-connectivity of different brain regions while local over-connectivity is reported within certain brain regions, especially the frontal lobe (Courchesne & Pierce, 2005 ; Vissers, Cohen, & Geurts, 2012 ). Functional connectivity, similar to structural connectivity, also seems to interact with development, such that young children with ASD exhibit functional over-connectivity, while adolescents and adults exhibit under-connectivity (Uddin, Supekar, & Menon, 2013 ). Across tasks,

adolescents and adults exhibit under-connectivity (Uddin, Supekar, & Menon, 2013 ). Across tasks, including language, theory of mind, executive function, and memory tasks, one of the most consistent findings in ASD is reduced frontal- posterior large-scale connectivity (Schipul, Keller, & Just, 2011 ). Most commonly reported are decreases in functional connectivity between frontal and parietal regions (Just, Cherkassky, Keller, Kana, & Minshew, 2007 ; Kana, Keller, Minshew, & Just, 2007 ). Many

(Just, Cherkassky, Keller, Kana, & Minshew, 2007 ; Kana, Keller, Minshew, & Just, 2007 ). Many of these findings are reviewed in the language and social communication sections later in this chapter. In general, these results suggest that large- scale coordination of multiple brain regions that subserve complex behaviors does not occur at the same level of temporal coordination as in healthy individuals.

Many studies of resting state functional connectivity have focused on the default mode network (DMN), a network which includes the medial prefrontal cortex, parietal cortex, posterior cingulate cortex, and the precuneus (Buckner, Andrews-Hanna, & Schacter, 2008 ). Decreased functional connectivity of the DMN in ASD has been reported in multiple studies (Anderson et al., 2011 ; Assaf et al., 2010 ; Cherkassky, Kana, Keller, & Just, 2006 ; Weng et al., 2010 ). Moreover, reductions in functional

; Cherkassky, Kana, Keller, & Just, 2006 ; Weng et al., 2010 ). Moreover, reductions in functional connectivity of the DMN correlated with impaired social communication abilities (Assaf et al., 2010 ; Weng et al., 2010 ). Whole-brain resting state functional connectivity has been used to attempt to classify participants, in order to assess the utility of this measure as a diagnostic or predictive tool (Anderson et al., 2011 ; Plitt, Barnes, & Martin, 2015 ). Anderson et al. ( 2011 ) report that

tool (Anderson et al., 2011 ; Plitt, Barnes, & Martin, 2015 ). Anderson et al. ( 2011 ) report that resting state functional connectivity was able to successfully classify individuals with ASD with 79 % accuracy, and was able to do so even more accurately (89 %) for individuals under the age of 20. Furthermore, classifier scores significantly correlated with social and communication symptoms on the Autism Diagnostic Observation Schedule (ADOS) (Anderson et al., 2011 ). Another study found that

Autism Diagnostic Observation Schedule (ADOS) (Anderson et al., 2011 ). Another study found that overall connectivity was able to classify participants with 78 % accuracy, with the highest classification accuracy (83 % accuracy) being in the connectivity of salience network (anterior cingulate cortex and anterior insula) (Uddin et al., 2013 ). Similarly, Plitt et al. ( 2015 ) report that resting state functional connectivity was able to classify individuals evincing ASD with significant accuracy

functional connectivity was able to classify individuals evincing ASD with significant accuracy (peak = 76.67 %). However, they argue that it does not yet have the specificity or sensitivity to be used as a biomarker, as behavioral measures of social impairments were more specific and sensitive to diagnosis, and outperformed the connectivity measures (95 % accuracy). Whole-brain analyses have also suggested that the most pronounced areas of reduced functional connectivity are in social brain

suggested that the most pronounced areas of reduced functional connectivity are in social brain regions, including limbic areas like the ventromedial prefrontal cortex, amygdala, hippocampus and middle temporal gyrus (Gotts et al., 2012 ). Reduced connectivity in these regions significantly predicted the severity of social skills symptoms on the Social Responsiveness Scale.

Similar to the developmental changes in structural connectivity that have been described in ASD, developmental changes in functional connectivity have also been reported. The majority of studies utilizing any form of neuroimaging with individuals with ASD typically use older individuals due to the limited success rate of scanning children due to practical limitations (Yerys et al., 2009 ). Research suggests that functionally, compared to adolescents and adults, young children with ASD may have

suggests that functionally, compared to adolescents and adults, young children with ASD may have increased connectivity across multiple brain regions. For example, Di Martino et al. ( 2011 ) found increased connectivity between the striatal networks and limbic regions in 7–14 year old children. Furthermore, large-scale brain connectivity was increased across multiple networks, including the default mode network, salience network (anterior cingulate and anterior insula), frontotemporal, motor

mode network, salience network (anterior cingulate and anterior insula), frontotemporal, motor and visual regions in children (Uddin, Supekar, Lynch et al., 2013 ). In particular, the hyper-connectivity in the salience network could discriminate between ASD and typically developing children with 78 % accuracy, 75 % sensitivity and 80 % specificity and could significantly predict severity scores on measures of repetitive and restrictive behaviors (Uddin, Supekar, & Menon, 2013 ). However, there

measures of repetitive and restrictive behaviors (Uddin, Supekar, & Menon, 2013 ). However, there are also reports of weaker functional connectivity between areas such as inferior frontal gyrus and superior temporal gyrus, and the strength of the synchronization between these areas was significantly correlated with language abilities in toddlers with ASD (Dinstein et al., 2011 ).

Language and Communication Language deficits in ASD vary greatly in severity; ranging from individuals with ASD who never develop language, to those who only have difficulties with higher order aspects of pragmatics. The variability of language deficits combined with the challenges of the imaging environment, have resulted in the majority of functional imaging studies involving higher functioning adults with ASD. Overall, individuals with ASD are less attentive to human voices and speech in

adults with ASD. Overall, individuals with ASD are less attentive to human voices and speech in general (Kuhl, Coffey-Corina, Padden, & Dawson, 2005 ). Relatedly, individuals with ASD do not show enhanced activation of the superior temporal sulcus in response to voice-related sounds (both speech and non-speech sounds), but show normal processing of nonvocal sounds (Gervais et al., 2004 ). This abnormal pattern of neural activity was also associated with impaired ability to recall the voice

abnormal pattern of neural activity was also associated with impaired ability to recall the voice sounds. Resting state functional connectivity suggests that this may be related to under-connectivity between voice selective areas of the right superior temporal sulcus and emotion and reward related regions, including the nucleus accumbens, orbitofrontal cortex, and amygdala (Abrams et al., 2013 ). This suggests that individuals with ASD might not find human voices inherently rewarding, and

). This suggests that individuals with ASD might not find human voices inherently rewarding, and therefore individuals with ASD may pay less attention to them. Furthermore, this reduced connectivity significantly predicted the severity of communication impairments on the ADI-R and ADOS (Abrams et al., 2013 ). Basic semantic processing, or the ability to understand the content of a sentence based on the meaning of words, is spared in many high functioning adults with ASD (Noens & Berckelaer-

on the meaning of words, is spared in many high functioning adults with ASD (Noens & Berckelaer- Onnes, 2005 ). However, certain deficits in semantic processing related to memory have been shown to occur in both behavioral and functional imaging studies of ASD. For example, individuals with ASD do not display a memory benefit when learning semantically related words (Tager-Flusberg, 1991 ) or using semantic knowledge (Toichi & Kamio, 2002 ). In a simple semantic processing task, where

) or using semantic knowledge (Toichi & Kamio, 2002 ). In a simple semantic processing task, where participants had to rate words as positive or negative, participants with ASD displayed reduced activation in Broca’s area, but increased activation in Wernicke’s area (Harris et al., 2006 ). A similar finding of reduced activation of Broca’s area was found when categorizing words based on their semantic characteristics (Gaffrey et al., 2007 ). However, some have argued that modulation of Broca’s

characteristics (Gaffrey et al., 2007 ). However, some have argued that modulation of Broca’s area activity may depend on task performance, as increased activation of Broca’s area which was less lateralized to the left hemisphere was found in a semantic response-naming task where participants with ASD performed with high task accuracy (Knaus, Silver, Lindgren, Hadjikhani, & Tager-Flusberg, 2008 ).

During sentence comprehension, individuals with ASD show reliably less activation in left inferior frontal gyrus (Broca’s area), and decreased connectivity between language related areas (Just, Cherkassky, Keller, & Minshew, 2004 ). The reduction in Broca’s area activity has been interpreted as a deficit in the ability to integrate and interpret individual words into the context of the entire sentence. In line with this interpretation, similar reduced activations in left inferior frontal gyrus

In line with this interpretation, similar reduced activations in left inferior frontal gyrus were also found in a task where contextual information was required to properly comprehend a sentence (Tesink et al., 2011 ). Other research has suggested that individuals with ASD use mental imagery more, as reflected by increased activation in occipital regions, when attempting to comprehend sentences that do not typically require mental imagery (Kana, Keller, Cherkassky, Minshew, & Just, 2006 ).

that do not typically require mental imagery (Kana, Keller, Cherkassky, Minshew, & Just, 2006 ). Despite this, the comprehension of sentences that are high in mental imagery was associated with reduced functional connectivity of frontal and parietal regions involved in language and spatial processing (Kana et al., 2006 ). In sum, the results across both semantic processing and comprehension studies suggest that typical language related regions (e.g., Broca’s area) might not be as specialized

suggest that typical language related regions (e.g., Broca’s area) might not be as specialized for language processing in ASD as they are in healthy individuals. Pragmatic language is the ability to use extra- lingual cues (e.g., tone of voice) to understand and use language in context, beyond simply understanding the literal meaning of words. Listeners often have to understand the underlying meaning of language using context cues, knowledge of the environment, and past experiences with the

meaning of language using context cues, knowledge of the environment, and past experiences with the speaker. Pragmatic language includes the use of irony, sarcasm, metaphor, and puns. Increased activation in right inferior frontal gyrus in participants with ASD relative to healthy participants has been found both when making inferences about a speaker based on context (Tesink et al., 2009 ) and when interpreting ironic statements (Wang, Lee, Sigman, & Dapretto, 2006 ). Similarly, researchers

when interpreting ironic statements (Wang, Lee, Sigman, & Dapretto, 2006 ). Similarly, researchers have found increased distributed right hemisphere activity when trying to understand puns (Kana & Wadsworth, 2012 ) and making inferences about emotional states and intentions (Mason, Williams, Kana, Minshew, & Just, 2008 ). The increase in right hemisphere processing in ASD has been hypothesized to reflect more effortful processing of pragmatic language (Mason et al., 2008 ; Tesink et al., 2009 ).

reflect more effortful processing of pragmatic language (Mason et al., 2008 ; Tesink et al., 2009 ). One specific aspect of pragmatic language is prosody, or the rhythm and intonation of language. Prosody can carry meaning above and beyond the content of speech, allowing the listener to derive meaning about the emotional state of the speaker, the grammatical nature of the utterance (i.e., a question), and the intentions and underlying meaning of the speaker, including irony and sarcasm. Research

and the intentions and underlying meaning of the speaker, including irony and sarcasm. Research has supported the idea that understanding prosodic cues is impaired in ASD, and this is associated with more nonspecific activation in ASD to both grammatical and emotional forms prosody (Eigsti, Schuh, Mencl, Schultz, & Paul, 2012 ). Others have suggested that reduced inhibition of the default mode network may contribute to disruptions in prosody tasks (Hesling et al., 2010 ).

Consistent with the literature already reviewed, perhaps the most notable and replicated neuroimaging finding in ASD related to language processing is reduced laterality of neural processing in ASD relative to healthy participants. For example, Kleinhans et al. ( 2008 ) found reduced left laterality in a verbal fluency task, and increased right hemisphere activation in participants with ASD. A combined fMRI and DTI study also reported reduced left hemisphere laterality for individuals with ASD,

fMRI and DTI study also reported reduced left hemisphere laterality for individuals with ASD, and those with atypical language laterality also had reduced FA values in the arcuate fasciculus, the white matter tract connecting Broca’s and Wernicke’s areas (Knaus et al., 2010 ). Another combined functional and structural connectivity study found reduced activation of frontal regions in a language task, and reduced structural connectivity between inferior frontal regions and temporal regions

task, and reduced structural connectivity between inferior frontal regions and temporal regions (Sahyoun, Belliveau, Soulières, Schwartz, & Mody, 2010 ). Furthermore, there is evidence that this alteration in language laterality occurs early in development. Children between the ages of 12–48 months who were either at-risk or diagnosed with ASD participated in an fMRI study while asleep with a simple story spoken (Eyler, Pierce, & Courchesne, 2012 ). Those children with ASD had reduced left

simple story spoken (Eyler, Pierce, & Courchesne, 2012 ). Those children with ASD had reduced left temporal laterality and increased right hemisphere activity to speech and these disruptions were more pronounced in older children. Moreover, toddlers with ASD also show reduced functional connectivity between language related areas such as inferior frontal gyrus and superior temporal gyrus, and the strength of the synchronization significantly correlated with language abilities (Dinstein et al.,

strength of the synchronization significantly correlated with language abilities (Dinstein et al., 2011 ). These results suggest that early connectivity disruptions may lead to reduced functional specialization of language related brain regions, including those results seen earlier related to comprehension and semantic processing. Behavioral research has shown a strong relationship between early nonverbal communication, specifically gestures, and verbal expressive and receptive language in

nonverbal communication, specifically gestures, and verbal expressive and receptive language in typically developing children (Iverson & Goldin-Meadow, 2005 ; Rowe & Goldin-Meadow, 2009 ). Likewise, gestures are also predictive of later language outcomes in young children at-risk for ASD (e.g., Gordon & Watson, 2015 ; Watson, Crais, Baranek, Dykstra, & Wilson, 2013 ). While it is known that the production of gestures in ASD is disrupted (e.g., Carpenter, Pennington, & Rogers, 2002 ; Loveland,

production of gestures in ASD is disrupted (e.g., Carpenter, Pennington, & Rogers, 2002 ; Loveland, Landry, Hughes, Hall, & McEvoy, 1988 ), there is recent neuroimaging evidence that the recognition and understanding of gestures may also be disrupted because of altered neural processing. Hubbard et al. ( 2012 ) found that when viewing a person speaking while using beat gestures (rhythmic co-speech gestures), typically developing children display increased activity in secondary auditory regions,

gestures), typically developing children display increased activity in secondary auditory regions, including right superior temporal regions. Participant with ASD did not display activity in superior temporal regions, but rather had increased activity in visual cortex, and this activity positively correlated with social communication symptom severity on the ADOS and Social Responsiveness Scale. This suggests that individuals with ASD may not be effectively integrating multimodal communicative

This suggests that individuals with ASD may not be effectively integrating multimodal communicative information in complex social situations.

Social Cognition and Emotion Disruptions in social and emotional processing are hallmark characteristics of ASD . It is clear that specific regions of the human brain are finely tuned towards recognizing and processing social stimuli. The term “social brain” has been used to refer to this set of structures, including the superior temporal sulcus, amygdala, orbitofrontal cortex and fusiform gyrus (Brothers, 1990 ). Evidence suggests that a combination of disrupted developmental of neural

gyrus (Brothers, 1990 ). Evidence suggests that a combination of disrupted developmental of neural structures involved in social processing may impair behavior, and likewise, lack of early experience with social interactions may impair proper functional specialization and development of neural structures (Harms, Martin, & Wallace, 2010 ; Pelphrey, Shultz, Hudac, & Vander Wyk, 2011 ). Here, we review the evidence for disruptions in neural structures involved in social cognition and emotion

review the evidence for disruptions in neural structures involved in social cognition and emotion processing in ASD. Similar to voice processing, individuals with ASD show reduced attention to human faces, and this disruption occurs early in life and is a strong predictor of later diagnosis (Osterling & Dawson, 1994 ). In healthy participants, face processing involves activity of the fusiform face area (FFA) (Kanwisher, McDermott, & Chun, 1997 ). In contrast, one of the most consistent fMRI

face area (FFA) (Kanwisher, McDermott, & Chun, 1997 ). In contrast, one of the most consistent fMRI findings has been that participants with ASD display reduced or lack of activation of the FFA when viewing faces (Corbett et al., 2009 ; Kleinhans et al., 2008 ; Pierce, Müller, Ambrose, Allen, & Courchesne, 2001 ). Rather, activation is found in distributed neural regions (e.g., frontal cortex, cerebellum) and may be different in different individuals (Pierce et al., 2001 ). Kleinhans et al. (

and may be different in different individuals (Pierce et al., 2001 ). Kleinhans et al. ( 2008 ) found reduced functional connectivity between FFA and other regions involved in social processing, including the amygdala, superior temporal sulcus, and posterior cingulate in ASD. Furthermore, greater social impairment on the ADI-R was associated with reduced FFA and amygdala connectivity and increased connectivity between FFA and inferior frontal gyrus (Kleinhans et al., 2008 ). In fact,

increased connectivity between FFA and inferior frontal gyrus (Kleinhans et al., 2008 ). In fact, multi-voxel pattern analysis associated with hypoactivation of the FFA has been used to predict clinical symptom severity on the ADOS and ADI (Coutanche, Thompson-Schill, & Schultz, 2011 ). There is evidence, however, that the reduction in FFA activity may be dependent on familiarity, such that participants with ASD have been reported to have normal levels of FFA activity when viewing familiar

with ASD have been reported to have normal levels of FFA activity when viewing familiar faces (e.g., their mother) (Pierce & Redcay, 2008 ). In fact, familiar faces also elicit typical activation of other brain regions involved in face processing, including the amygdala, but did not elicit activity in the medial frontal cortex as seen in healthy participants (Pierce, Haist, Sedaghat, & Courchesne, 2004 ). This suggests that in individuals with ASD, the FFA has the capability to respond to

2004 ). This suggests that in individuals with ASD, the FFA has the capability to respond to faces, but this activation does not occur unless the person is familiar, suggesting that social drive and motivation factors may be modulating the activity of the FFA.

The ability of individuals with ASD to recognize and understand emotions has been most often studied using facial expressions of emotions or emotional body positions . Neuroimaging findings related to emotional prosody and tone of voice were reviewed earlier in the pragmatic language section of this chapter. The ability to recognize emotions from facial expressions is critical for successful social interactions. The majority of reports suggest that facial emotion recognition is impaired in ASD;

interactions. The majority of reports suggest that facial emotion recognition is impaired in ASD; however, there is evidence that this ability may be dependent on intellectual ability (Harms et al., 2010 ). While some studies have found intact basic emotion recognition in high functioning individuals with ASD, there is also a possibility that compensatory mechanisms and task cues may benefit these individuals that are not found in real world social situations (e.g., matching tasks where

these individuals that are not found in real world social situations (e.g., matching tasks where emotional labels are provided) (Harms et al., 2010 ). Similar to studies of basic face processing, neuroimaging evidence suggests that individuals with ASD use compensatory or alternative mechanisms for facial emotion recognition, as seen by reduced activation in the FFA and amygdala (Ashwin, Baron-Cohen, Wheelwright, O’Riordan, & Bullmore, 2007 ; Wang, Dapretto, Hariri, Sigman, & Bookheimer, 2004

Wheelwright, O’Riordan, & Bullmore, 2007 ; Wang, Dapretto, Hariri, Sigman, & Bookheimer, 2004 ), but increased activation in the anterior cingulate cortex (Ashwin et al., 2007 ) and precuneus (Wang et al., 2004 ) relative to healthy individuals. The anterior cingulate and precuneus are involved in cognitive processing such as monitoring performance and attention, supporting the idea that emotion recognition is a more effortful and cognitively based process for individuals with ASD (Ashwin et

recognition is a more effortful and cognitively based process for individuals with ASD (Ashwin et al., 2007 ; Wang et al., 2004 ). Reduced functional connectivity between the amygdala and visual cortex areas was also found during facial emotion recognition in ASD (Rudie et al., 2011 ). Furthermore, reduced FFA and amygdala activity when viewing faces, including emotional expressions, may be related to gaze fixation on faces, such that time spent fixating positively correlated with amygdala and

to gaze fixation on faces, such that time spent fixating positively correlated with amygdala and FFA activity in individuals with ASD (Dalton et al., 2005 ) As participants with ASD tend to spend less time looking at faces, this may negatively impact the ability of these neural systems involved in face recognition to properly develop and process faces. Moreover, recognition of facial expressions depicting complex social emotions (e.g., guilt, envy) pose a greater difficulty to individuals with

depicting complex social emotions (e.g., guilt, envy) pose a greater difficulty to individuals with ASD, including high functioning individuals, and this is associated with reduced activity in the amygdala (Baron-Cohen et al., 1999 ; Baron-Cohen, Jolliffe, Mortimore, & Robertson, 1997 ). Other forms of nonverbal behavior including body posture and eye gaze can also convey important communicative and emotional information. Researchers suggest that participants with ASD have difficulty recognizing

emotional information. Researchers suggest that participants with ASD have difficulty recognizing emotional body postures, and this is associated with reduced activity in the amygdala and inferior frontal gyrus (Grèzes, Wicker, Berthoz, & de Gelder, 2009 ). Other studies of emotional body position have supported the finding of reduced activity in the inferior frontal gyrus, but have also found reduced activity of the insula (Hadjikhani et al., 2009 ). Individuals with ASD have difficulty

reduced activity of the insula (Hadjikhani et al., 2009 ). Individuals with ASD have difficulty understanding intention conveyed by eye gaze, and this is associated with reduced modulation of activity in the superior temporal sulcus (Pelphrey, Morris, & McCarthy, 2005 ).

The ability to understand and interpret the actions of others is critical for normal social processing. In fact, humans can very easily understand the actions of others simply through kinematic patterns from lights attached to the major joints of the body, termed point-light walkers (Johansson, 1973 ). Based off of very little perceptual information, we can attribute intention, emotion, personality and gender to point-light walkers (Allison, Puce, & McCarthy, 2000 ). In healthy participants,

and gender to point-light walkers (Allison, Puce, & McCarthy, 2000 ). In healthy participants, perception of biological motion cues involves greater activation of superior temporal sulcus relative to nonbiological motion (Grossman & Blake, 2002 ). Individuals with ASD have difficulty automatically recognizing biological motion (Blake, Turner, Smoski, Pozdol, & Stone, 2003 ), and this is associated with a lack of enhanced activity in superior temporal sulcus for biological motion relative to

with a lack of enhanced activity in superior temporal sulcus for biological motion relative to nonbiological motion (Carter & Pelphrey, 2006 ). Furthermore, functional under-connectivity of the superior temporal sulcus with fronto-parietal regions can successfully predict the ability to recognize emotion from point-light walkers (Alaerts et al., 2013 ). Researchers have long theorized that a core deficit in ASD is an impairment in theory of mind, or the ability to understand the thoughts and

deficit in ASD is an impairment in theory of mind, or the ability to understand the thoughts and beliefs of others and to attribute mental states to others (e.g., Baron-Cohen, Leslie, & Frith, 1985 ). Multiple tasks have been used to study the neural processes involved in theory of mind in ASD. Some have argued that many of these tasks rely too heavily on language; therefore other non-verbal tasks have been developed (e.g., Castelli, Frith, Happé, & Frith, 2002 ; Gallagher et al., 2000 ). Verbal

have been developed (e.g., Castelli, Frith, Happé, & Frith, 2002 ; Gallagher et al., 2000 ). Verbal theory of mind tasks typically involve stories about the thoughts and beliefs of others. One common type of task is a false belief task, which requires the participant to understand that two people can have different knowledge of a situation, and that knowledge can be incorrect and can differ from the knowledge of the participant (Baron-Cohen, 2000 ). Other tasks involve short stories or

from the knowledge of the participant (Baron-Cohen, 2000 ). Other tasks involve short stories or vignettes that involve understanding others mental states (Happé, 1994 ). Many nonverbal tasks of theory of mind rely on either cartoons or animations that require participants to attribute mental states to nonhuman entities, like geometrical shapes (e.g., Castelli et al., 2002 ; Heider & Simmel, 1944 ). Across all of these different types of tasks, participants with ASD show reduced ability to

1944 ). Across all of these different types of tasks, participants with ASD show reduced ability to attribute mental states to others (for review see Baron-Cohen, 2000 ). Furthermore, this is associated with reduced activation in areas such as the medial prefrontal cortex, superior temporal sulcus, and temporoparietal junction (Castelli et al., 2002 ). A combined structural and functional connectivity study found reduced temporoparietal junction and inferior frontal gryrus activity in

connectivity study found reduced temporoparietal junction and inferior frontal gryrus activity in participants with ASD when making intentional attributions, as well as reduced white matter integrity of the superior temporal cortex using DTI (Kana, Libero, Hu, Deshpande, & Colburn, 2014 ). Reduced functional connectivity between superior temporal sulcus and extrastriate cortex was also found in individuals with ASD during a visual theory of mind task (Castelli et al., 2002 ). Further research

individuals with ASD during a visual theory of mind task (Castelli et al., 2002 ). Further research also suggests reduced connectivity between frontal regions involved in theory of mind and posterior regions such as the temporoparietal junction (Kana, Keller, Cherkassky, Minshew, & Just, 2009 ). In sum, multiple theory of mind studies support the idea of reduced activity and functional connectivity between areas of the frontal lobe, superior temporal sulcus, and temporoparietal junction in ASD.

In trying to develop a comprehensive theory for the social and neural disruptions in ASD , some have hypothesized that dysfunction of mirror neurons may be at the heart of the disorder (Oberman & Ramachandran, 2007 ; Rizzolatti & Fabbri-Destro, 2010 ). Mirror neurons were first discovered in monkeys and were found to fire both when the monkey performed an action, as well as when the monkey observed another person or monkey performing the same action (Gallese, Fadiga, Fogassi, & Rizzolatti, 1996

another person or monkey performing the same action (Gallese, Fadiga, Fogassi, & Rizzolatti, 1996 ). Research in humans has supported the general idea of a “mirror neuron system,” where the same brain involves areas in both the observation and execution of actions. The most commonly found brain regions with these properties include the inferior frontal gyrus and inferior parietal lobule (Rizzolatti & Craighero, 2004 ). There is some evidence of an extended mirror neuron system that is involved

& Craighero, 2004 ). There is some evidence of an extended mirror neuron system that is involved in emotion processing (Wicker et al., 2003 ), somatosensory stimuli (Keysers et al., 2004 ), and language processing (Hauk, Johnsrude, & Pulvermüller, 2004 ). As human studies of the mirror neuron system rely on functional imaging , which does not have the resolution to see activity of individual neurons, it is impossible to know if the same individual neurons are active in both the observation and

it is impossible to know if the same individual neurons are active in both the observation and execution conditions, rather they may be independent populations of neurons that are located in similar regions (Dinstein, 2008 ; Hickok, 2009 ). Therefore, there has been considerable skepticism of the nature and function of the mirror neuron system in humans (Dinstein, 2008 ; Hickok, 2009 ).

Due to the implication that brain regions with mirror properties respond to the behaviors of others in a similar way they respond to self-executed actions, many have hypothesized that this may be the mechanism used to recognized, understand, and empathize with the behaviors of others (Rizzolatti & Craighero, 2004 ). As ASD is characterized by difficulty with social impairments included impaired imitation, emotion recognition, and empathy, it has been hypothesized that dysfunction of the mirror

emotion recognition, and empathy, it has been hypothesized that dysfunction of the mirror neuron system may contribute to ASD (Oberman & Ramachandran, 2007 ; Rizzolatti & Fabbri-Destro, 2010 ). This idea has some support from fMRI studies, for example, imitation and observation of emotional facial expressions resulted in reduced inferior frontal gyrus activation in participants with ASD, and this reduction in activity was significantly correlated with symptom severity on the social subscales of

reduction in activity was significantly correlated with symptom severity on the social subscales of the ADOS and ADI-R (Dapretto et al., 2006 ). However, other studies do not support the notion of a primary deficit in the mirror neuron system, and rather suggest that social processing and imitation deficits are associated with differences in areas such as the amygdala, which is not believed to be part of the mirror neuron system (Grèzes et al., 2009 ; Williams, Waiter et al., 2006 ). Rather, the

of the mirror neuron system (Grèzes et al., 2009 ; Williams, Waiter et al., 2006 ). Rather, the clear distinctions in amygdala, fusiform gyrus, superior temporal sulcus and global connectivity differences in ASD, as reviewed throughout this chapter, suggest a more widespread cortical deficit (Dinstein, 2008 ). Overall, there is little clear fMRI evidence of a mirror neuron dysfunction in ASD (Hamilton, 2013 ). The general idea of a “broken” mirror neuron system has been met with resistance

(Hamilton, 2013 ). The general idea of a “broken” mirror neuron system has been met with resistance (Dinstein, 2008 ; Fan, Decety, Yang, Liu, & Cheng, 2010 ; Southgate & Hamilton, 2008 ), and until more is understood about the nature and existence of the human mirror neuron system, many argue it is premature to use it as an explanatory mechanism of ASD (Dinstein, 2008 ; Hamilton, 2013 ).

Repetitive Behaviors and Restricted Interests Despite being a core symptom domain in the diagnosis of ASD, neuroimaging research on repetitive behaviors and restricted interests (RRBs) has not been researched to nearly the same degree as deficits in social communication and language (Pina-Camacho et al., 2012 ). Research in this area is challenging given the likelihood that different symptoms within this domain may have different functional and structural neural correlates (Langen, Durston,

within this domain may have different functional and structural neural correlates (Langen, Durston, Kas, van Engeland, & Staal, 2011 ). Differences in neural correlates across specific symptoms are in line with other evidence that these symptoms cluster together less strongly than social and communication deficits and vary in their developmental trajectories and relationships with individual difference variables such as IQ (Lord & Bishop, 2015 ; Lord & Jones, 2012 ). Despite differences in

difference variables such as IQ (Lord & Bishop, 2015 ; Lord & Jones, 2012 ). Despite differences in specific findings across studies, one set of regions regularly found to be associated with RRBs is the basal ganglia (Calderoni, Bellani, Hardan, Muratori, & Brambilla, 2014 ). Increased volume of the caudate, a region involved in goal-directed behavior, has been found in multiple studies of children and adults with ASD and linked to RRBs (e.g., Hollander et al., 2005 ; Langen et al., 2009 , Rojas

and adults with ASD and linked to RRBs (e.g., Hollander et al., 2005 ; Langen et al., 2009 , Rojas et al., 2006 ). While the majority of these studies used cross-sectional designs, based on the results of a longitudinal study, the authors (Langen et al., 2009 ) suggested it was likely ASD symptoms were driving the increased caudate volume, an example of behavior shaping brain development. Another region often found to be associated with these symptoms in multiple studies is the anterior

Another region often found to be associated with these symptoms in multiple studies is the anterior cingulate, a region also involved in goal- directed behavior. For example, greater activation was found in this region for children with ASD compared to typically developing children when viewing pictures of personally relevant vs. non-personally relevant interests (Cascio et al., 2014 ). Using a saccade task paradigm in which individuals have to shift their eye gaze towards or away from a target

task paradigm in which individuals have to shift their eye gaze towards or away from a target depending on the trial, adults with ASD were more likely to direct gaze towards the stimulus regardless of the trial, leading to faster correct responses, but more antisaccade errors, or errors in shifting gaze away from the target (Thakkar et al., 2008 ). This pattern of response was structurally and functionally associated with the anterior cingulate. In the same study, diagnostic ratings of RRBs

functionally associated with the anterior cingulate. In the same study, diagnostic ratings of RRBs made on the Autism Diagnostic Interview-Revised were also associated with the anterior cingula te. The saccade task used in the Thakkar et al., 2008 study is often used as a measure of executive functioning (e.g., Kramer et al., 2014 ). Multiple studies have demonstrated a relationship between RRBs and executive functioning as measured by neuropsychological measures. For example, in a study of

and executive functioning as measured by neuropsychological measures. For example, in a study of adults with ASD, scores on multiple executive functioning measures, including measures of set-shifting or cognitive flexibility, monitoring or working memory, and response inhibition were associated with ratings of RRBs made on multiple, widely used diagnostic instruments (Lopez et al., 2005 ). Using a different measure of set-shifting, individuals with ASD were found to be able to make initial

a different measure of set-shifting, individuals with ASD were found to be able to make initial shifts in learning new rules, but had difficulty continuing to follow those new rules (Miller, Ragozzino, Cook, Sweeney, & Mosconi, 2014 ). This pattern of response was associated with ratings of RRBs. Based on the results of functional imaging studies, a large set of neural networks have been identified as being related to both executive dysfunction and RRBs (Pina-Camacho et al., 2012 ). These

as being related to both executive dysfunction and RRBs (Pina-Camacho et al., 2012 ). These networks include the fronto-striatal system, a system which connects the basal ganglia to multiple frontal areas, including the anterior cingulate. Given the overlap in neural correlates, many have speculated as to how executive dysfunction and repetitive behavior and restricted interests are related. The extent to which executive dysfunction is a cause, consequence, or correlate of RRBs is unclear;

The extent to which executive dysfunction is a cause, consequence, or correlate of RRBs is unclear; however, some have argued that given the repetitive behaviors shows up early in the developmental course of ASD, they are more likely a cause rather than a consequence of executive dysfunction (Leekam, Prior, & Uljarevic, 2011 ).

Chapter Summary Neuropsychological assessment and neuroimaging are two useful tools in understanding ASD with current or future clinical applications. Neuropsychological assessment has identified a set of cognitive deficits found in some, but not all, individuals with ASD, including deficits in aspects of intellectual functioning, executive functioning, memory, attention and language (Dawson, 1996 ; Klin et al., 2005 ). Identifying these deficits can be clinically useful given their relationship

; Klin et al., 2005 ). Identifying these deficits can be clinically useful given their relationship to adaptive functioning (Klin et al., 2005 ). Although there is significant variability at the individual level, the overall pattern of neuropsychological deficits in ASD is distinct from that of other neurodevelopmental disorders (Minshew et al., 1992 ). The pattern of deficits found in ASD may reflect a more generalized deficit in the processing of complex information (Minshew & Goldstein, 1998 ).

a more generalized deficit in the processing of complex information (Minshew & Goldstein, 1998 ). Although not currently used as part of clinical practice, in the future it is hoped that neuroimaging will improve ASD diagnosis and facilitate the development of biologically grounded, individualized ASD treatment (Ecker, Bookheimer, & Murphy, 2015 ). There is much work to be done, but several studies using differences in brain structure across individual regions (Anderson et al., 2011 ; Calderoni

using differences in brain structure across individual regions (Anderson et al., 2011 ; Calderoni et al., 2012 ; Ecker et al., 2010 ; Uddin et al., 2011 ) or differences in structural or functional connectivity (Anderson et al., 2011 ; Deshpande et al., 2013 ) to distinguish between individuals with or without ASD have yielded high classification accuracy rates. In contrast, neuroimaging has not yet yielded any direct benefits in terms of ASD treatment (Lord & Jones, 2012 ). Differences in total

yielded any direct benefits in terms of ASD treatment (Lord & Jones, 2012 ). Differences in total brain volume and the volume of specific regions in those with ASD compared to typically developing individuals have been identified (Frazier & Hardan, 2009 ; Redcay & Courchesne, 2005 ; Stanfield et al., 2008 ). These differences have been linked to specific symptoms (Schumann et al., 2009 ). It is clear that developmental stage is a critical factor in understanding neuroimaging results. Depending on

that developmental stage is a critical factor in understanding neuroimaging results. Depending on the age at assessment, the same brain region may be found to be larger, smaller, or no different in individuals with ASD compared to typically developing individuals (Nickl-Jockschat et al., 2012 , Zielinski et al., 2014 ). Structural and functional connectivity may also be higher or lower in individuals with ASD compared to typically developing individuals depending on age at assessment (Ben

with ASD compared to typically developing individuals depending on age at assessment (Ben Bashat et al., 2007 ; Shukla et al., 2011 ; Uddin, Supekar, & Menon, 2013 ). In general, early development is associated with larger total brain volume and greater connectivity with subsequent varying trajectories for brain volume across neural regions and decreased structural and functional connectivity (Ben Bashat et al., 2007 ; Hazlett et al., 2011 ; Shukla et al., 2011 ; Uddin, Supekar, & Menon, 2013

Bashat et al., 2007 ; Hazlett et al., 2011 ; Shukla et al., 2011 ; Uddin, Supekar, & Menon, 2013 ). Differences in connectivity occur across large-scale networks and ASD has been referred to as a “developmental disconnection disorder” (Geschwind & Levitt, 2007 ). Functional neuroimaging studies have identified differences in activation and recruitment of brain regions to perform specific tasks in those with ASD compared to typically developing individuals. In terms of language processing, ASD is

with ASD compared to typically developing individuals. In terms of language processing, ASD is associated with abnormal processing of voice- related sounds (Gervais et al., 2004 ), less activation in traditional language processing regions for tasks such as sentence comprehension (Just et al., 2004 ) and reduced laterality of language processing (Kleinhans et al., 2008 ). Individuals with ASD also show altered processing of extra- lingual cues such as prosody (Eigsti et al., 2012 ) and gestures

show altered processing of extra- lingual cues such as prosody (Eigsti et al., 2012 ) and gestures (Hubbard et al., 2012 ). Abnormal neural processing of social and emotional stimuli has been identified in individuals with ASD, showing reduced fusiform face area (FFA) activation when viewing faces (Corbett et al., 2009 ; Kleinhans et al., 2008 ; Pierce et al., 2001 ). This reduction in FFA activation is related to ASD symptom severity (Coutanche et al., 2011 ). Reduced activation in the FFA and

is related to ASD symptom severity (Coutanche et al., 2011 ). Reduced activation in the FFA and amygdala has been shown for facial emotion recognition (Ashwin et al., 2007 ; Wang et al., 2004 ). Theory of mind is impaired in ASD (Baron-Cohen, 2000 ) and at the neural level, individuals with ASD show reduced neural activity and functional connectivity in social processing regions when completing theory of mind tasks (Castelli et al., 2002 ; Kana et al., 2009 ). Although less well studied and

theory of mind tasks (Castelli et al., 2002 ; Kana et al., 2009 ). Although less well studied and understood than language and social communication and interaction, neuroimaging studies of repetitive behaviors and restricted interests (RRBs) have shown that those symptoms are related to regions involved in goal-directed behavior and planning such as the basal ganglia and anterior cingulate (Calderoni et al., 2014 , Cascio et al., 2014 ). Greater severity of RRB symptoms is associated with

et al., 2014 , Cascio et al., 2014 ). Greater severity of RRB symptoms is associated with poorer executive functioning (Lopez et al., 2005 ). Neuroimaging studies also show a relationship between RRBs and executive functioning (Pina-Camacho et al., 2012 ).

Limitations and Future Directions Although there are many replicated findings, the large body of ASD neuroimaging research is notable for variability in findings across studies. These differences in findings likely reflect differences in the individuals studied (e.g., differences in age and level of functioning; Brieber et al., 2007 ; Freitag et al., 2009 ; Schumann et al., 2010 ) as well as differences in scanning methodology (e.g., magnetic field strength and instructions given to participants;

in scanning methodology (e.g., magnetic field strength and instructions given to participants; Nielsen et al., 2013 ). Given the cost and amount of time required to conduct and analyze the results of neuroimaging studies, sample sizes are often relatively small; in a review of 16 voxel-based morphometry studies, sample sizes of ASD participants ranged from 11 to 33 (Nickl-Jockschat et al., 2012 ). Small sample sizes in neuroimaging research may contribute to overestimates of real differences and

Small sample sizes in neuroimaging research may contribute to overestimates of real differences and failures to replicate findings (Button et al., 2013 ). In evaluating the results of classification studies based on neuroimaging, it is important to note that simulation studies have shown that with small sample sizes, high accuracy of 70 % or greater can result from chance rather than true differences across groups (Combrisson & Jerbi, 2015 ). Recent developments in neuroimaging research in ASD

across groups (Combrisson & Jerbi, 2015 ). Recent developments in neuroimaging research in ASD have attempted to solve the problem of small sample sizes by developing data sharing agreements across individual research sites. One such collaboration is the Autism Brain Imaging Data Exchange (Di Martino et al., 2014 ). This collaboration and others have and will continue to produce studies which involve the analysis of data from several hundred individuals with ASD across the lifespan. In one

involve the analysis of data from several hundred individuals with ASD across the lifespan. In one recent study of over 500 individuals with ASD and 500 typically developing individuals, although some relationships were found at the whole brain level between neuroanatomy and ASD, on the whole the authors concluded that the individuals with ASD had “anatomical profiles that are mostly indistinguishable from those of control individuals” (Haar, Berman, Behrmann, & Dinstein, 2014 , p. 9). The null

from those of control individuals” (Haar, Berman, Behrmann, & Dinstein, 2014 , p. 9). The null results from this well-powered study differ from the results of many smaller studies which found more robust differences; however, it is important to note that this study was limited to higher functioning individuals with ASD and there is some evidence of greater differences in lower functioning individuals (Freitag et al., 2009 ). It has been recommended that to understand the variability in findings,

(Freitag et al., 2009 ). It has been recommended that to understand the variability in findings, future research divide ASD individuals based on genetic factors or clinical presentation to look for differences that may be specific to certain subgroups with ASD (Haar et al., 2014 ). Studies which examine continuous dimensions such as symptom severity rather than binary diagnosis may also prove useful given the variability across individuals with ASD in symptom expression (Ecker et al., 2015 ). In

given the variability across individuals with ASD in symptom expression (Ecker et al., 2015 ). In terms of clinical practice, regardless of the continuous nature of ASD symptoms, there will always be a need for diagnostic classification. If classification algorithms based on brain structure and function are to be used in the future, there is a need to replicate past findings in new, larger samples and to use diverse samples that better reflect the types of individuals encountered in clinical

and to use diverse samples that better reflect the types of individuals encountered in clinical settings. It will be important to establish that classifiers not only successful distinguish those with ASD from those with typical development, but also that they can distinguish between those with ASD and those with other neurodevelopmental or psychiatric disorders (Ecker et al., 2015 ).

Introduction Study of autism spectrum disorders has grown exponentially in the decades since it was first described by Kanner ( 1943 ), and the 1960s, when Uta Frith and others began challenging the predominant view that autism was a very rare disorder caused by socio-environmental factors (e.g., poor parenting). Due in no small part to the dedicated efforts of researchers over the years, autism spectrum disorder (ASD) is now widely recognized as having significant genetic and biologic bases. In

disorder (ASD) is now widely recognized as having significant genetic and biologic bases. In keeping with the increased diagnostic rate in the past decade, the pace of research in autism spectrum disorders (ASD) seems to be picking up speed each year. Damiano and colleagues ( 2014 ) recently estimated that the number of published, peer-reviewed journal articles on the topic increased from 800 in 2003 to more than 3400 in 2013. With the significant social, economic, and emotional toll ASD can

in 2003 to more than 3400 in 2013. With the significant social, economic, and emotional toll ASD can exact on individuals, families, and society, continued interest in research and clinical implications comes as no surprise. Indeed, the gains made in research over the ensuing decades have served to greatly improve assessment and treatment practices from the creation of validated, standardized assessments to informing practitioners and social policy advocates on which types of treatments have

to informing practitioners and social policy advocates on which types of treatments have proven efficacious in treating ASD and comorbid symptoms. As is common in scientific research, the process of answering one research question often leads to several new questions. Diagnosis of ASD is based on observed core deficits in social communication, restricted interests/repetitive behaviors, and atypical sensory responses, typically exhibited from very early on in development. However, symptoms are

sensory responses, typically exhibited from very early on in development. However, symptoms are heterogeneous in the context of widely varying adaptive and intellectual capacity across affected individuals. Heterogeneity also exists within the same individual across time. Core symptoms affect emotion regulation and practically all areas of behavior; sleep, feeding, and behavioral disorders are common but may present differently across individuals. As discussed within previous chapters,

are common but may present differently across individuals. As discussed within previous chapters, comorbidity is high in individuals with ASD, with an estimated 50 % or more exhibiting comorbid psychiatric disorders such as ADHD, obsessive compulsive disorder, mood disorders, or anxiety disorders (Mazefsky et al., 2012 ). Accordingly, assessment of ASD and comorbid concerns can be difficult, with heterogeneity presenting challenges to both research and practice. Nonetheless, the ability of

with heterogeneity presenting challenges to both research and practice. Nonetheless, the ability of professionals to comprehensively assess and treat individuals with ASD continues to advance. Improvements particularly in the understanding of comorbid disorders and transdiagnostic issues affecting individuals with ASD have enabled us to provide better care for this population. However, there is still much work to be done towards understanding assessment and treatment of both ASD and concurrent

much work to be done towards understanding assessment and treatment of both ASD and concurrent disorders. At present, ASD is often not diagnosed until around age 4 years in the USA (Baio, 2012 ) although parents often express concern months or even years earlier (Goin-Kochel, Mackintosh, & Meyers, 2006 ). Obstacles such as distance, insurance, and wait lists likely contribute to delay between first concern and assessment. Future improvements in accurately identifying at-risk children and in

first concern and assessment. Future improvements in accurately identifying at-risk children and in diagnosing ASD are likely to improve assessment in the future. Methods for more economical and time-efficient objective data collection would reduce wait-list times. Furthering our understanding of atypicalities and risk factors will improve our ability to diagnose accurately and target “at risk” children to provide appropriate intervention at younger ages, thus improving outcomes. The burgeoning

to provide appropriate intervention at younger ages, thus improving outcomes. The burgeoning use of increasingly sophisticated technology will contribute to such efforts. This chapter summarizes the most recent developments discussed in this book, with a particular focus on emerging research and future directions.

Etiology The advent of neuroimaging has led to rapid developments in the area of etiology (Anagnostou & Taylor, 2011 ; Ecker & Murphy, 2014 ), even though the heterogeneity of ASD complicates identification of neurobiological markers such as brain abnormalities or endophenotypes (Volkmar et al., 2019 ). Recent research results offer promising avenues towards identifying underlying biological markers via assessment of underlying developmental constructs (e.g., attentional control, executive

markers via assessment of underlying developmental constructs (e.g., attentional control, executive functioning, visual fixation, face processing) in young children (Klin & Jones, 2008 ; Klin, Lin, Gorrindo, Ramsay, & Jones, 2009 ; Ozonoff, Heung, Byrd, Hansen, & Hertz- Picciotto, 2008 ; Rogers, 2009 ; Zwaigenbaum et al., 2007 ). Animal models will likely remain important avenues to advance understanding of epigenetic contributants to development of ASD, hypothesized shared pathways with other

of epigenetic contributants to development of ASD, hypothesized shared pathways with other disorders (e.g., ADHD; Matson, Rieske, & Williams, 2013 ), and potential mediators. For example, recent studies indicate a correlation between atypical enteric bacteria colonies and brain functioning in both animals and humans. Altered gut micro biota have been correlated with repetitive behaviors and social impairment in mice (Desbonnet, Clarke, Shanahan, Dinan, & Cryan, 2014 ); in humans, atypical gut

impairment in mice (Desbonnet, Clarke, Shanahan, Dinan, & Cryan, 2014 ); in humans, atypical gut micro biota have been associated with ASD and potential brain changes in humans (Adams, Johansen, Powell, Quig, & Rubin, 2011 ; Dinan & Cryan, 2013 ; Mulle, Sharp, & Cubells, 2013 ; Stilling, Dinan, & Cryan, 2014 ). Current research results are mixed and largely correlational, but our nascent understanding of the interaction between the brain and neurotransmitters and bioflora elsewhere in the body

of the interaction between the brain and neurotransmitters and bioflora elsewhere in the body suggest a need to continue research that looks beyond the brain alone. Even given the challenges of studying heterogeneous samples, overlaps in findings contribute to important etiological clues including structural differences in the brain (e.g., synaptic overgrowth early in life, reduced white matter, differences in frontal lobe, limbic, and cerebellar structure, and anomalous cortical organization;

differences in frontal lobe, limbic, and cerebellar structure, and anomalous cortical organization; Dinstein et al., 2011 ; Hazlett et al., 2011 ; Wolff et al., 2014 ). Research has furthered our understanding of genetic correlates of increased ASD risk (see State & Levitt, 2011 , for review), which has also increased our understanding of syndromes commonly concurrent with ASD (e.g., Fragile X syndrome, tuberous sclerosis). With regard to assessment of existing cases of ASD, research continues

tuberous sclerosis). With regard to assessment of existing cases of ASD, research continues to inform conceptualization of the disorder as indicated by changes in diagnostic criteria from DSM-IV-TR to DSM-5 and removal from Rett Syndrome from the ASD spectrum (Volkmar & McPartland, 2014 ). Evidence thus far suggests ASD is affected by the interaction of numerous factors , both biological and environmental. It is likely that the continuing development towards preclinical models of ASD will

environmental. It is likely that the continuing development towards preclinical models of ASD will continue to advance our understanding of etiology, with potential to inform further research on assessment and treatment.

Screening and Assessment in Early Childhood Future advances in understanding etiology will likely improve our ability to screen for ASD. Stoner and colleagues ( 2014 ) examined postmortem tissues from children with and without autism, finding disruption of cortical laminar architecture in 10/11 children with ASD, but only 1/10 without. The authors suggest differences in layer formation and neuronal differentiation may be observable quite early in development, perhaps even prenatally. As

neuronal differentiation may be observable quite early in development, perhaps even prenatally. As neuroimaging and other biomedical techniques improve over the next few decades, the possibility of accurately detecting high-risk infants is an exciting prospect. Even if it were to become possible to identify cases of ASD via neuroimaging or some sort of definitive physiological test, such diagnostic tools would not obviate the need for behavioral and psychological assessment due to the

diagnostic tools would not obviate the need for behavioral and psychological assessment due to the heterogeneous nature of symptom expression and comorbidities, and the importance of such assessment to determining treatment and prognosis. Other promising techniques are also emerging. At present, clear, defining symptoms of ASD may not be readily apparent until at least a year (Ozonoff et al., 2010 ), but it may be possible to detect endophenotypic differences at an earlier age (Elsabbagh et al.,

), but it may be possible to detect endophenotypic differences at an earlier age (Elsabbagh et al., 2012 ; Wolff et al., 2014 ). Reviewing advancements in identifying risk factors at earlier ages, Damiano and colleagues ( 2014 ) suggest consideration of a “ prodromal ASD ” diagnosis similar to commonly used labels in other areas (e.g., pre-hypertension, pre- diabetes). The authors propose that as our ability to identify risk factors improves, use of such a label may enable more targeted

that as our ability to identify risk factors improves, use of such a label may enable more targeted intervention or closer scrutiny of possible symptoms in “at risk” individuals at follow up appointments. Alternatively, in a move fitting with increased attention to the high comorbidity of ASD with other neurodevelopmental disorders , Damiano, Mazefsky, White, and Dichter ( 2014 ) and colleagues propose categorizations highlighting heightened risk for a variety of disorders known to have

propose categorizations highlighting heightened risk for a variety of disorders known to have overlapping risk factors. For example, a number of disorders (e.g., ASD, some cases of intellectual disability, attention deficit/hyperactivity disorder) are considered likely to have common etiological features, an area of continuing research (Gillberg, 2010 ; Matson et al., 2013 ). In this vein, Gillberg ( 2010 ) coined the term ESSENCE: Early Symptomatic Syndromes Eliciting Neurodevelopmental

Gillberg ( 2010 ) coined the term ESSENCE: Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations in recognition that “the co- existence of disorders and sharing of symptoms… is the rule rather than the exception.” Gillberg uses the term ESSENCE to refer to a pattern of symptoms commonly presenting within the first 3 years of age, which are considered indicators of potential neurodevelopmental disorder (Gillberg, 2010 ).

Damiano and colleagues ( 2014 ) offer a thoughtful analysis of important areas for future research into early risk markers. Among these are potential differences in risk factors in high-risk versus low-risk populations . Thus far, samples in studies of ASD risk factors have included those already assumed to be at higher risk for ASD development (e.g., siblings of those with ASD, premature infants; Limperopoulos et al., 2008 ; Wetherby et al., 2004 ). Studies sampling different populations may

Limperopoulos et al., 2008 ; Wetherby et al., 2004 ). Studies sampling different populations may reveal new information about risk factors. For example, the significance of certain behaviors or markers may change depending on group. Young and colleagues ( 2009 ) noted that fixation on eyes over mouth in early infancy may adversely affect language development in a high-risk group, but not be correlated with adverse outcome in low-risk, typically developing infants. Protective factors are another

with adverse outcome in low-risk, typically developing infants. Protective factors are another area for continuing research in childhood; for example, what differences exist between siblings of children with ASD who go on to also receive an ASD diagnosis, versus those who do not? This line of research may help us identify and promote protective factors in the future.

Although in some cases ASD symptoms may not become readily apparent until a child’s environment becomes more cognitively and socially demanding (e.g., upon entering school), it is generally agreed that developmental deficits in social and communication skills are evident around the second year of life, if not sooner (McConnell, 2002 ; Webster, Feiler, & Webster, 2003 ; Woods & Wetherby, 2003 ). However, significant differences exist between research showing reliable and stable diagnoses by 2

However, significant differences exist between research showing reliable and stable diagnoses by 2 years of age (Lord et al., 2006 , Webb & Jones, 2009 ), and the average age of diagnosis in a community setting. Wiggins, Baio, and Rice ( 2006 ) estimated the time delay between initial evaluation and ASD diagnosis is approximately 13 months. The estimated average age for ASD diagnosis in the USA is around 4–5 years of age (Centers for Disease Control and Prevention [CDC], 2012 ). Efforts at

is around 4–5 years of age (Centers for Disease Control and Prevention [CDC], 2012 ). Efforts at improving screening in the general population and continuing assessment for those identified as “at risk” have been elemental in reducing the average age of ASD diagnosis, though age at diagnosis varies significantly depending on symptom expression . Maenner et al. ( 2013 ) found that children exhibiting all 12 of the behavioral features listed in the DSM-IV-TR ASD criteria were diagnosed at an

all 12 of the behavioral features listed in the DSM-IV-TR ASD criteria were diagnosed at an average age of 3.8 years, while those evincing only 7 features were diagnosed at an average age of 8.2 years. In one large study, children with impairments in nonverbal communication, pretend play, inflexible routines, and motor stereotypies were diagnosed earlier than those with impairments in conversation skills, peer relations, and with idiosyncratic speech (Maenner et al., 2013 ). Using information

skills, peer relations, and with idiosyncratic speech (Maenner et al., 2013 ). Using information available from the Autism and Developmental Disabilities Monitoring (ADDM) Network, Maenner et al. ( 2013 ) found the average age of ASD diagnosis by community professionals was as late as 5.7 years among the 8-year-old sample. Identification of which features of ASD are likely to emerge at different ages would assist in assessment in community settings. The researchers identified impairments in

ages would assist in assessment in community settings. The researchers identified impairments in nonverbal communication, repetitive motor behaviors, inflexibility with routines, and pretend play were indicative of earlier diagnosis, but contrary to expectations, reduced sharing of interests was not (Maenner et al., 2013 ).

The percentage of pediatricians routinely screening for ASD has increased over the years to a current rate of approximately 50 % (Arunyanart et al., 2012 ; dosReis, Weiner, Johnson, & Newschaffer, 2006 ; Gillis, 2009 ); however, this means approximately half of pediatricians do not routinely screen for ASD despite published recommendations. Necessary steps for increasing screening include increasing primary care provider (PCP) knowledge about ASD symptoms and screeners, and structuring the

primary care provider (PCP) knowledge about ASD symptoms and screeners, and structuring the practice setup to allow adequate time and resources for screening. In a study of early intervention professionals and ASD screening , Tomlin and colleagues ( 2013 ) found providers felt unprepared to talk with families about ASD-related concerns and ill-equipped to utilize various ASD measures. These same providers were, however, eager for training in these areas. Per Zuckerman et al. ( 2013 ), PCPs feel

were, however, eager for training in these areas. Per Zuckerman et al. ( 2013 ), PCPs feel especially unprepared to identify ASD symptoms in Spanish-speaking Latino families and in African American children. The CDC launched the “Learn the Signs. Act Early” campaign to target PCPs and allied professionals, with efforts to address some of the needs identified by these professionals. Continuing efforts to improve early screening and assessment in community health care should address the following

to improve early screening and assessment in community health care should address the following needs: provision of socioculturally sensitive measures, access to systems that could adequately handle an increase in referrals, availability of effective early intervention programs to which to refer clients, and continuing education (Crais et al., 2014 ).

An additional impediment to timely, accurate diagnosis in early childhood is the lack of established developmental milestones and trajectories related to the skills underlying core ASD deficits. If such data existed, PCPs might make use of skill acquisition charts similar to the widely recognized growth charts to identify troubling changes in trajectory, and as a means of conveying concerns to caregivers. Because of the lack of established developmental milestones, it remains imperative that

caregivers. Because of the lack of established developmental milestones, it remains imperative that healthcare providers are knowledgeable about early ASD symptoms (Ibanez, Stone, & Coonrod, 2014 ) such as language regression , which often (but not always) occurs between the ages of 20 and 24 months (Barger, Campbell, & McDonough, 2013 ). Early identification is a target of the national Healthy People 2020 initiative in the USA (Honda, Shimizu, Imai, & Nitto, 2005 ) and will remain an important

2020 initiative in the USA (Honda, Shimizu, Imai, & Nitto, 2005 ) and will remain an important area of research for the foreseeable future. Trends in developmental trajectories are emerging, including regression and stasis in cognitive, social, and language development (Anderson, Liang, & Lord, 2014 ; Baird et al., 2008 ; Fein et al., 2013 ; Landa, Gross, Stuart, & Bauman, 2012 ); a greater understanding of such trajectories and ages at which behavioral features of ASD are likely to be observed

of such trajectories and ages at which behavioral features of ASD are likely to be observed would improve detection of ASD in community settings (Maenner et al., 2013 ). Additionally, as recommended by the American Academy of Pediatrics , multilevel screening should occur repeatedly through 3 years of age because of variability in topography and timing of emerging ASD symptoms (Ozonoff et al., 2008 ; Rogers, 2009 ; Zwaigenbaum et al., 2007 ). Research and clinical practice should continue to

2008 ; Rogers, 2009 ; Zwaigenbaum et al., 2007 ). Research and clinical practice should continue to target reduction of time lapses between initial parent concerns, initial screening, and ASD diagnosis. The diagnostic process varies widely across cultural and national divides ; for example, families in India may travel for days in order to access qualified professionals (Daley, 2004 ). Future efforts should continue to explore the varied experiences and needs of individuals across global and

should continue to explore the varied experiences and needs of individuals across global and cultural settings, using quantitative and qualitative research to discern the nuances of these environments and identify effective means of improving care. Efforts should also be made to bridge the gap between research and clinical practice, including practical concerns related to systemic health care policies, insurance, improving efficiency, and insuring resource availability (see Dingfelder & Mandell,

insurance, improving efficiency, and insuring resource availability (see Dingfelder & Mandell, 2011 ; Jensen & Foster, 2010 ; Stahmer & Aarons, 2009 ).

Assessment in Adolescence and Adulthood In the scope of ASD research, adolescents and adults are notably underrepresented. In a recent review of intervention studies for adults with ASD, Bishop-Fitzpatrick, Minshew, and Eack ( 2013 ) found only 13 randomized control trial studies for adults with ASD, coinciding perhaps unsurprisingly with the distinct drop-off in federal funding for intervention programs at age 21 (Damiano et al., 2014 ). Overall there are few professionals with the requisite

programs at age 21 (Damiano et al., 2014 ). Overall there are few professionals with the requisite expertise and skill in assessing adults and who are able to implement resulting recommendations. Research and assessment measures are particularly sparse for transition-aged individuals, adolescents, and young adults making the transition from child to adult services. Well-researched assessments and interventions to prepare for and facilitate the transition into adulthood are sorely lacking.

and interventions to prepare for and facilitate the transition into adulthood are sorely lacking. Individuals with ASD often have disparate skill levels across domains, and high skills in one area may obscure skill deficits in another. For example, just because an individual seems quite knowledgeable about weather patterns and meteorology does not mean he or she is adept at picking out appropriate clothing to prepare for expected rain or cold; skill at tidying one’s desk and assignments at

clothing to prepare for expected rain or cold; skill at tidying one’s desk and assignments at school (perhaps a skill that has been explicitly taught) does not necessarily generalize to ability to organize and clean one’s home. One risk adolescents with ASD and their families face is an oversight of some important skill area that will be necessary to maintain a level of independence once the child ages out of the school system . Without purposeful assessment, families may be surprised and

child ages out of the school system . Without purposeful assessment, families may be surprised and somewhat at a loss when assumed skills do not generalize to a new setting (e.g., from school to work, or from parent’s home to supported independent living or group home). An important role of continuing assessment throughout childhood and adolescence is to systematically assess skills in various domains to ascertain skills and deficits and different points in development. These assessments should

to ascertain skills and deficits and different points in development. These assessments should extend beyond academic skills and the school/home settings, with an eye towards developing and generalizing skills to increase independence in various settings and situations likely to be encountered in adulthood.

In the past few decades we have seen an increase in community and employer awareness of the desire and ability for many individuals with ASD to maintain gainful employment. Underemployment is a pervasive problem for individuals with ASD, both with and without intellectual disability. Estimates of employment for young adults with ASD range from just under one third to significantly less, depending on intellectual level, environmental barriers, etc. (Taylor & Seltzer, 2011 ). Assessments geared

on intellectual level, environmental barriers, etc. (Taylor & Seltzer, 2011 ). Assessments geared towards informing service providers and potential employers about employment- related skills of an individual with ASD are few. Many employers are not aware of the ease with which they may accommodate an employee with ASD-related needs; for example, one of the most important architectural factors in workplace fit for individuals with ASD is acoustics (Mostafa, 2007 ). Simple accommodations such as

workplace fit for individuals with ASD is acoustics (Mostafa, 2007 ). Simple accommodations such as use of earphones or rearrangement of workspaces can significantly reduce acoustic noise. One measure that has been employed with notable success is the TEACCH Transition Assessment Profile (TTAP; Mesibov & Shea, 2010 ). This assessment investigates an individual’s skill at various tasks across a number of domains, including initiating and sustaining performance when faced with a number of issues

of domains, including initiating and sustaining performance when faced with a number of issues often encountered in a real work environment : visual and auditory distractions, correction, being left to work alone in a room or continuing after interruption, when required to ask for help, and changes in instructions/schedule. The need for services related to transition to adult medical and community services, independent adult living, and employment are only expected to grow as the children

services, independent adult living, and employment are only expected to grow as the children diagnosed in the past two decades age out of the public school system and child- oriented treatments. Future directions in this field of great importance include identification of domains important for safe, healthy, fulfilling independent living while there is still time to teach these skills before the individual ages out of school and other support providers. Examples of such skills include how to use

ages out of school and other support providers. Examples of such skills include how to use public transportation and what to do if unexpected things happen; making healthy food, exercise, and financial decisions; identifying, communicating, preventing and treating common health issues; issues related to sexuality and romantic interests. Future research should also address attitudes of potential employers, best practices to begin and maintain suitable employment, and factors that affect both

employers, best practices to begin and maintain suitable employment, and factors that affect both individual and employer satisfaction. As the number of adults with ASD continues to grow, it is imperative that service availability increases as well.

There are a few measures to screen for or diagnose ASD in young to middle-aged adults, but greater research is also needed in this area. As is mentioned in the chapter in assessment in adulthood, assessment of this population should include assessment not only of the individuals needs and skills but also the quality, amount, and role of family, peer, employer, and community support (Henninger & Taylor, 2012 ). Assessment should also be done with an eye towards how recommendations derived from

Taylor, 2012 ). Assessment should also be done with an eye towards how recommendations derived from the assessment might be practically implemented for individuals in this developmental stage. Research on assessment and intervention for the geriatric ASD population is even more lacking. Following a multidisciplinary meeting to identify research needs for this population, Piven and Rabins ( 2011 ) identified several research priorities targeting older adults with ASD. First listed is the need to

identified several research priorities targeting older adults with ASD. First listed is the need to develop tools to diagnose and assess the needs of older adults with ASD; assessment in adults can be difficult as assessment often relies in part on childhood history. Additionally, it is possible that symptom expression may differ across the life span, particularly in the context of any mental and physical disorders arising later in life. As the authors point out, recent research suggests

and physical disorders arising later in life. As the authors point out, recent research suggests stability of ASD rates across the life span, yet prevalence in older adults is less than would be statistically suspected (Piven & Rabins, 2011 ). This raises the likelihood of a large number of undiagnosed older adults with ASD, but there are no validated instruments designed specifically to screen or diagnose this population.

Comorbidities Undoubtedly, significant progress has been made over the past few decades in understanding ASD and comorbidities. Only a few decades ago, it was widely thought that an ASD or intellectual disability diagnosis precluded a comorbid psychological disorder (Matson & Williams, 2013 ). Now, we know not only that comorbid diagnoses are possible, but that individuals with ASD are at a higher risk of comorbid psychiatric and neurodevelopmental disorders than the typically developing

higher risk of comorbid psychiatric and neurodevelopmental disorders than the typically developing population; in fact, the majority of individuals with ASD have at least one comorbid psychiatric diagnosis (Mazefsky et al., 2012 ). A great deal of research is still needed to improve assessment for comorbid disorders in the context of ASD, where symptoms may be differentially expressed and for which few well-established measures currently exist. Assessments should also take into consideration

few well-established measures currently exist. Assessments should also take into consideration the possibility that scores on some domains (e.g., anxiety) may be inflated due to the nature of ASD, and adjust for phenotypic overlap (e.g., social avoidance, decreased eye contact) accordingly. Additionally, an increased understanding of the reasons for high rates of comorbidity may prove critical to understanding etiological contributions of ASD. Are ASD- related deviations in core developmental

understanding etiological contributions of ASD. Are ASD- related deviations in core developmental processes (e.g., joint attention, social understanding) causing a greater risk for disorders such as depression and anxiety? Are prenatal architectural differences in the brain a common denominator in ASD and common comorbidities? As Mansell and colleagues ( 2008 ) ponder, how might transdiagnostic features such as a propensity towards rumination, poor emotional regulation, or avoidance underlie a

such as a propensity towards rumination, poor emotional regulation, or avoidance underlie a range of disorders over the life span? Future clarification of these questions may help identify new assessment and treatment targets.

Tools and Technology It seems unlikely that a singular biomarker for ASD will be found, given that the current state of etiologic research points to a number of environmental and biologic factors which overlap with other neurodevelopmental disorders . Therefore it is likely that the use of psychometrically sound assessment measures will continue to play a key role in ASD diagnosis and in tracking treatment efficacy. We have seen that changes to classification systems over the years have affected

treatment efficacy. We have seen that changes to classification systems over the years have affected sensitivity and specificity of clinical diagnoses. The accurate diagnosis of ASD across settings necessitates the use of standardized clinical tools designed to elicit sufficient information in line with the diagnostic criteria being used. As diagnostic criteria change over time, diagnostic tools in use should be examined and revised accordingly to ensure their fidelity to current understanding of

use should be examined and revised accordingly to ensure their fidelity to current understanding of the disorder. As discussed in the chapter on implications of ICD and DSM criteria , some of the most widely used ASD assessments were based on DSM-IV-TR criteria, and thus may not sufficiently measure all of the behaviors designated in the DSM-5 (e.g., sensory sensitivities). Of course, diagnostic measures are not designed for use in isolation and should not overrule clinical judgment. As our

measures are not designed for use in isolation and should not overrule clinical judgment. As our understanding of ASD evolves, so must diagnostic criteria and our means of assessment. Research into the impact of diagnostic changes from DSM-IV-TR and DSM-5 is underway and will likely continue for the next several years. As technological advances continue, new tools will further improve diagnosis and intervention assessment . Damiano and colleagues ( 2014 ) posit that technological advances such

intervention assessment . Damiano and colleagues ( 2014 ) posit that technological advances such as eye tracking may allow for tracking social reciprocity in infancy and early childhood, using predicted and plotted developmental trajectories to notice changes in a manner similar to which physical growth charts are commonly used at pediatric visits. While recognizing variability in child development, tracking individual trajectories using objective data may help increase accuracy of children

tracking individual trajectories using objective data may help increase accuracy of children referred for more comprehensive ASD evaluation. Further research is needed to use eye tracking in this way, but as technology becomes less expensive and more accessible it is plausible that eye tracking could become an important tool at the primary care level. Additional promising technologies include those capable of automatic vocal analysis to help discern differences in language acquisition and use

capable of automatic vocal analysis to help discern differences in language acquisition and use in early childhood (Yoder, Oller, Richards, Gray, & Gilkerson, 2013 ). Yoder and colleagues ( 2013 ) utilized single, all-day recordings for their sample and found that this methodology can provide a stable estimate for vocal use, offering the ability to compare ASD and typically developing samples. Larger sample sizes are needed, but similar technology may allow us to use

Social anxiety disorder.  Intellectual developmental disorder (intellectual disability) and global developmental delay.

F84.0 The symptoms of social (pragmatic) communication disorder overlap with those of social anxiety disorder. The differentiating feature is the timing of the onset of symptoms. In social (pragmatic) communication disorder, the individual has never had effective social communication; in social anxiety disorder, the social communication skills developed appropriately but are not utilized because of anxiety, fear, or distress about social interactions. Social communication skills may be

because of anxiety, fear, or distress about social interactions. Social communication skills may be deficient among individuals with global developmental delay or intellectual developmental disorder, but a separate diagnosis is not given unless the social communication deficits are clearly in excess of the intellectual limitations.

Unspecified Communication Disorder F80.9 This category applies to presentations in which symptoms characteristic of communication disorder that cause clinically significant distress or impairment in social, occupational, or other important areas of functioning predominate but do not meet the full criteria for communication disorder or for any of the disorders in the neurodevelopmental disorders diagnostic class. The unspecified communication disorder category is used in situations in which the

class. The unspecified communication disorder category is used in situations in which the clinician chooses not to specify the reason that the criteria are not met for communication disorder or for a specific neurodevelopmental disorder, and includes presentations in which there is insufficient information to make a more specific diagnosis.

Autism Spectrum Disorder  Diagnostic Criteria A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by all of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).

3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

E. These disturbances are not better explained by intellectual developmental disorder (intellectual disability) or global developmental delay. Intellectual developmental disorder and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual developmental disorder, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Specify current severity based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2):
Requiring very substantial support Specify if: With or without accompanying intellectual impairment With or without accompanying language impairment Specify if: Associated with a known genetic or other medical condition or environmental factor (Coding note: Use additional code to identify the associated genetic or other medical condition.)

Associated with a neurodevelopmental, mental, or behavioral problem Specify if: With catatonia (refer to the criteria for catatonia associated with another mental disorder, p. 135, for definition) (Coding note: Use additional code F06.1 catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)
 TABLE 2 Severity levels for autism spectrum disorder (examples of level of support needs)

| Severity level                        | Social communication                                                                                                                                                                                                                                                                                          | Restricted, repetitive behaviors

|

|---------------------------------------|---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|----------------------------------------------------------------------------------------------------------------------------------------------------------

-------------------------------------------------------------------------------------------------------------------------------------------------------------------|

| Level 3 “Requiring very substantial support” | Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches. | Inflexibility of

to meet needs only and responds to only very direct social approaches. | Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.           |

| Level 2 “Requiring substantial support”     | Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication.                         | Inflexibility of behavior,

who has markedly odd nonverbal communication.                         | Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action. |

| Level 1 “Requiring support”              | Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make

in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful. | Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.                  |

Recording Procedures It may be helpful to note level of support needed for each of the two core psychopathological domains in Table 2 (e.g., “requiring very substantial support for deficits in social communication and requiring substantial support for restricted, repetitive behaviors”). Specification of “with accompanying intellectual impairment” or “without accompanying intellectual impairment” should be recorded next. Language impairment specification should be recorded thereafter. If there

should be recorded next. Language impairment specification should be recorded thereafter. If there is accompanying language impairment, the current level of verbal functioning should be recorded (e.g., “with accompanying language impairment—no intelligible speech” or “with accompanying language impairment—phrase speech”). For autism spectrum disorder for which the specifiers “associated with a known genetic or other medical condition or environmental factor” or “associated with a

with a known genetic or other medical condition or environmental factor” or “associated with a neurodevelopmental, mental, or behavioral problem” are appropriate, record autism spectrum disorder associated with (name of condition, disorder, or factor) (e.g., autism spectrum disorder associated with tuberous sclerosis complex). These specifiers apply to presentations in which the listed condition or problem is potentially relevant to the clinical care of the individual and do not necessarily

or problem is potentially relevant to the clinical care of the individual and do not necessarily indicate that the condition or problem is causally related to the autism spectrum disorder. If the associated neurodevelopmental, mental, or behavioral problem meets criteria for a neurodevelopmental or other mental disorder, both autism spectrum disorder and the other disorder should be diagnosed. If catatonia is present, record separately “catatonia associated with autism spectrum disorder.” For

catatonia is present, record separately “catatonia associated with autism spectrum disorder.” For more information, see criteria for catatonia associated with another mental disorder in the chapter “Schizophrenia Spectrum and Other Psychotic Disorders.”

Specifiers The severity specifiers (see Table 2) may be used to describe succinctly the current symptomatology (which might fall below level 1), with the recognition that severity may vary by context and fluctuate over time. Severity of social communication difficulties and restricted, repetitive behaviors should be separately rated. The descriptive severity categories should not be used to determine eligibility for and provision of services. Indeed, individuals with relatively better skills

eligibility for and provision of services. Indeed, individuals with relatively better skills overall may experience different or even greater psychosocial challenges. Thus, service needs can only be developed at an individual level and through discussion of personal priorities and targets. Regarding the specifier “with or without accompanying intellectual impairment,” understanding the (often uneven) intellectual profile of a child or adult with autism spectrum disorder is necessary for

uneven) intellectual profile of a child or adult with autism spectrum disorder is necessary for interpreting diagnostic features. Separate estimates of verbal and nonverbal skill are necessary (e.g., using untimed nonverbal tests to assess potential strengths in individuals with limited language). To use the specifier “with or without accompanying language impairment,” the current level of verbal functioning should be assessed and described. Examples of the specific descriptions for “with

functioning should be assessed and described. Examples of the specific descriptions for “with accompanying language impairment” might include no intelligible speech (nonverbal), single words only, or phrase speech. Language level in individuals “without accompanying language impairment” might be further described as speaks in full sentences or has fluent speech. Since receptive language may lag behind expressive language development in autism spectrum disorder, receptive and expressive language

expressive language development in autism spectrum disorder, receptive and expressive language skills should be considered separately. The specifier “associated with a known genetic or other medical condition or environmental factor” can be applied when an individual has a known genetic condition (e.g., Rett syndrome, fragile X syndrome, Down syndrome), a known medical condition (e.g., epilepsy), or a history of environmental exposure in utero to a known teratogen or infection (e.g., fetal

or a history of environmental exposure in utero to a known teratogen or infection (e.g., fetal valproate syndrome, fetal alcohol syndrome, fetal rubella). This specifier should not be viewed as synonymous with causation of autism spectrum disorder. A condition may be listed as being associated with autism spectrum disorder when it is thought to be potentially clinically relevant or inform care and not because the clinician is asserting a cause. Examples include autism spectrum disorder

care and not because the clinician is asserting a cause. Examples include autism spectrum disorder associated with a unique genomic copy number variant that could be clinically relevant even if the specific abnormality may not have directly caused nor have previously been linked to autism spectrum disorder, or Crohn’s disease, which could exacerbate behavioral symptoms. The specifier “associated with a neurodevelopmental, mental, or behavioral problem” can be applied to indicate problems (e.g.,

a neurodevelopmental, mental, or behavioral problem” can be applied to indicate problems (e.g., irritability, sleep problems, self-injurious behavior, or developmental regression) that contribute to the functional formulation or are a focus of treatment. Additional neurodevelopmental, mental, or behavioral disorders should also be noted as separate diagnoses (e.g., attention-deficit/hyperactivity disorder; developmental coordination disorder; disruptive behavior, impulse-control, and conduct

disorder; developmental coordination disorder; disruptive behavior, impulse-control, and conduct disorders; anxiety, depressive, or bipolar disorders; tics or Tourette’s disorder; feeding, elimination, or sleep disorders). Catatonia can occur as a comorbid condition with autism spectrum disorder. In addition to classic symptoms of posturing, negativism (opposition or no response to instructions or external stimuli), mutism, and stupor, an increase or worsening of stereotypy and self-injurious

or external stimuli), mutism, and stupor, an increase or worsening of stereotypy and self-injurious behavior may form part of the symptom complex of catatonia in the setting of autism spectrum disorder.

Diagnostic Features The essential features of autism spectrum disorder are persistent impairment in reciprocal social communication and social interaction (Criterion A), and restricted, repetitive patterns of behavior, interests, or activities (Criterion B). These symptoms are present from early childhood and limit or impair everyday functioning (Criteria C and D). The stage at which functional impairment becomes obvious will vary according to characteristics of the individual and his or her

impairment becomes obvious will vary according to characteristics of the individual and his or her environment. Core diagnostic features are evident in the developmental period, but intervention, compensation, and current supports may mask difficulties in at least some contexts. Manifestations of the disorder also vary greatly depending on the severity of the autistic condition, developmental level, chronological age, and possibly gender; hence, the term spectrum. Individuals without cognitive

chronological age, and possibly gender; hence, the term spectrum. Individuals without cognitive or language impairment may have more subtle manifestation of deficits (e.g., Criterion A, Criterion B) than individuals with accompanying intellectual or language impairments and may be making great efforts to mask these deficits. Criterion A deficits in social communication will be more subtle if an individual has better overall communication skills (e.g., is verbally fluent, does not have

if an individual has better overall communication skills (e.g., is verbally fluent, does not have intellectual impairments). Similarly, Criterion B deficits (i.e., restricted patterns of behavior and interests) may be less obvious if the interests are closer to age-typical norms (e.g., Ancient Egypt or trains as compared to wiggling a string). Autism spectrum disorder encompasses disorders previously referred to as early infantile autism, childhood autism, Kanner’s autism, high-functioning

referred to as early infantile autism, childhood autism, Kanner’s autism, high-functioning autism, atypical autism, pervasive developmental disorder not otherwise specified, childhood disintegrative disorder, and Asperger’s disorder. The impairments in social communication and social interaction specified in Criterion A are pervasive and sustained. Diagnoses are most valid and reliable when based on multiple sources of information, including clinician’s observations, caregiver history, and,

on multiple sources of information, including clinician’s observations, caregiver history, and, when possible, self-report. Verbal and nonverbal deficits in social communication have varying manifestations, depending on the individual’s age, intellectual level, and language ability, as well as other factors such as treatment history and current support. Many individuals have language deficits, ranging from complete lack of speech through language delays, poor comprehension of speech, echoed

ranging from complete lack of speech through language delays, poor comprehension of speech, echoed speech, or stilted and overly literal language. Even when formal language skills (e.g., vocabulary, grammar) are intact, the use of language for reciprocal social communication is impaired in autism spectrum disorder.

Deficits in social-emotional reciprocity (i.e., the ability to engage with others and share thoughts and feelings) may be shown, for example, in young children with little or no initiation of social interaction and no sharing of emotions, along with reduced or absent imitation of others’ behavior. What language exists is often one-sided, lacking in social reciprocity, and used to request or label rather than to comment, share feelings, or converse. In older children and adults without

or label rather than to comment, share feelings, or converse. In older children and adults without intellectual impairments or language delays, deficits in social-emotional reciprocity may be most apparent in difficulties processing and responding to complex social cues (e.g., when and how to join a conversation, what not to say). Individuals who have developed compensation strategies for some social challenges still struggle in novel or unsupported situations and suffer from the effort and

social challenges still struggle in novel or unsupported situations and suffer from the effort and anxiety of consciously calculating what is socially intuitive for most individuals. This behavior may contribute to lower ascertainment of autism spectrum disorder in these individuals, perhaps especially in adult women. Thus, longer assessments, observation in naturalistic settings, and inquiring about any tolls of social interaction may be needed. If asked about the costs of social interaction,

any tolls of social interaction may be needed. If asked about the costs of social interaction, for example, these individuals might respond that social interactions are exhausting for them, that they are unable to concentrate because of the mental effort in monitoring social conventions, that their self-esteem is adversely affected by being unable to be themselves, and so forth. Deficits in nonverbal communicative behaviors used for social interaction are manifested by absent, reduced, or

nonverbal communicative behaviors used for social interaction are manifested by absent, reduced, or atypical use of eye contact (relative to cultural norms), gestures, facial expressions, body orientation, or speech intonation. An early feature of autism spectrum disorder is impaired joint attention as manifested by a lack of pointing, showing, or bringing objects to share interest with others, or failure to follow someone’s pointing or eye gaze. Individuals may learn a few functional gestures,

failure to follow someone’s pointing or eye gaze. Individuals may learn a few functional gestures, but their repertoire is smaller than that of others, and they often fail to use expressive gestures spontaneously in communication. Among young people and adults with fluent language, the difficulty in coordinating nonverbal communication with speech may give the impression of odd, wooden, or exaggerated “body language” during interactions. Impairment may be relatively subtle within individual

“body language” during interactions. Impairment may be relatively subtle within individual modes (e.g., someone may have relatively good eye contact when speaking) but noticeable in poor integration of eye contact, gesture, body posture, prosody, and facial expression for social communication, or in difficulty maintaining these for sustained periods or when under stress.

Deficits in developing, maintaining, and understanding relationships should be judged against norms for age, gender, and culture. There may be absent, reduced, or atypical social interest, manifested by rejection of others, passivity, or inappropriate approaches that seem aggressive or disruptive. These difficulties are particularly evident in young children, in whom there is often a lack of shared social play and imagination (e.g., age-appropriate flexible pretend play) and, later, insistence

social play and imagination (e.g., age-appropriate flexible pretend play) and, later, insistence on playing by very fixed rules. Older individuals may struggle to understand what behavior is considered appropriate in one situation but not another (e.g., casual behavior during a job interview), or the different ways that language may be used to communicate (e.g., irony, white lies). There may be an apparent preference for solitary activities or for interacting with much younger or older people.

apparent preference for solitary activities or for interacting with much younger or older people. Frequently, there is a desire to establish friendships without a complete or realistic idea of what friendship entails (e.g., one-sided friendships or friendships based solely on shared special interests). Relationships with siblings, coworkers, and caregivers are also important to consider (in terms of reciprocity). Autism spectrum disorder is also defined by restricted, repetitive patterns of

of reciprocity). Autism spectrum disorder is also defined by restricted, repetitive patterns of behavior, interests, or activities (as specified in Criterion B), which show a range of manifestations according to age and ability, intervention, and current supports. Stereotyped or repetitive behaviors include simple motor stereotypies (e.g., hand flapping, finger flicking), repetitive use of objects (e.g., spinning coins, lining up toys), and repetitive speech (e.g., echolalia, the delayed or

(e.g., spinning coins, lining up toys), and repetitive speech (e.g., echolalia, the delayed or immediate parroting of heard words; use of “you” when referring to self; stereotyped use of words, phrases, or prosodic patterns). Excessive adherence to routines and restricted patterns of behavior may be manifest in resistance to change (e.g., distress at apparently small changes, such as taking an alternative route to school or work; insistence on adherence to rules; rigidity of thinking) or

an alternative route to school or work; insistence on adherence to rules; rigidity of thinking) or ritualized patterns of verbal or nonverbal behavior (e.g., repetitive questioning, pacing a perimeter). Highly restricted, fixated interests in autism spectrum disorder tend to be abnormal in intensity or focus (e.g., a toddler strongly attached to a pan or piece of string; a child preoccupied with vacuum cleaners; an adult spending hours writing out timetables). Some fascinations and routines may

cleaners; an adult spending hours writing out timetables). Some fascinations and routines may relate to apparent hyper- or hyporeactivity to sensory input, manifested through extreme responses to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects, and sometimes apparent indifference to pain, heat, or cold. Extreme reaction to or rituals involving taste, smell, texture, or appearance of food or excessive food restrictions are

rituals involving taste, smell, texture, or appearance of food or excessive food restrictions are common and may be a presenting feature of autism spectrum disorder.

Many individuals with autism spectrum disorder without intellectual or language impairments learn to suppress repetitive behavior in public. In these individuals, repetitive behaviors like rocking or finger flicking may serve an anxiolytic or self-soothing function. Special interests may be a source of pleasure and motivation and provide avenues for education and employment later in life. Diagnostic criteria may be met when restricted, repetitive patterns of behavior, interests, or activities

criteria may be met when restricted, repetitive patterns of behavior, interests, or activities were clearly present during childhood or at some time in the past, even if symptoms are no longer present. Criterion D requires that the features must cause clinically significant impairment in social, occupational, or other important areas of current functioning. Criterion E specifies that the social communication deficits, although sometimes accompanied by intellectual developmental disorder

communication deficits, although sometimes accompanied by intellectual developmental disorder (intellectual disability), are not in line with the individual’s developmental level; impairments exceed difficulties expected on the basis of developmental level. Standardized behavioral diagnostic instruments with good psychometric properties, including caregiver interviews, questionnaires and clinician observation measures, are available and can improve reliability of diagnosis over time and across

observation measures, are available and can improve reliability of diagnosis over time and across clinicians. However, the symptoms of autism spectrum disorder occur as dimensions without universally accepted cutoff scores for what would constitute a disorder. Thus, the diagnosis remains a clinical one, taking all available information into account, and is not solely dictated by the score on a particular questionnaire or observation measure.

Associated Features Many individuals with autism spectrum disorder also have intellectual and/or language impairment (e.g., slow to talk, language comprehension behind production). Even those with average or high intelligence usually have an uneven profile of abilities. The gap between intellectual and adaptive functional skills is often large. It is common for individuals with autism to have theory-of-mind deficits (i.e., to have difficulty seeing the world from another person’s perspective),

deficits (i.e., to have difficulty seeing the world from another person’s perspective), but these are not necessarily present in all cases. Executive function deficits are also common but not specific, as are difficulties with central coherence (i.e., being able to understand context or to “see the big picture,” and thus tending to overfocus on detail). Motor deficits are often present, including odd gait, clumsiness, and other abnormal motor signs (e.g., walking on tiptoes). Self-injury (e.g.,

odd gait, clumsiness, and other abnormal motor signs (e.g., walking on tiptoes). Self-injury (e.g., head banging, biting the wrist) may occur, and disruptive/challenging behaviors are more common in children and adolescents with autism spectrum disorder than other disorders, including intellectual developmental disorder. Some individuals develop catatonic-like motor behavior (slowing and “freezing” mid-action), but these are typically not of the magnitude of a catatonic episode. However, it is

mid-action), but these are typically not of the magnitude of a catatonic episode. However, it is possible for individuals with autism spectrum disorder to experience a marked deterioration in motor symptoms and display a full catatonic episode with symptoms such as mutism, posturing, grimacing, and waxy flexibility. The risk period for comorbid catatonia appears to be greatest in the adolescent years.

Prevalence Frequencies for autism spectrum disorder across the United States have been reported to be between 1% and 2% of the population, with similar estimates in child and adult samples. However, prevalence appears to be lower among U.S. African American (1.1%) and Latinx children (0.8%) compared with White children (1.3%), even after the effect of socioeconomic resources is taken into account. The reported prevalence of autism spectrum disorder may be affected by misdiagnosis, delayed

The reported prevalence of autism spectrum disorder may be affected by misdiagnosis, delayed diagnosis, or underdiagnosis of individuals from some ethnoracial backgrounds. Prevalence across non-U.S. countries has approached 1% of the population (0.62% median global prevalence), without substantial variation based on geographic region or ethnicity and across child and adult samples. Globally, the male:female ratio in well-ascertained epidemiological samples appears to be 3:1, with concerns about

ratio in well-ascertained epidemiological samples appears to be 3:1, with concerns about underrecognition of autism spectrum disorder in women and girls.

Development and Course The age and pattern of onset also should be noted for autism spectrum disorder. The behavioral features of autism spectrum disorder first become evident in early childhood, with some cases presenting a lack of interest in social interaction in the first year of life. Symptoms are typically recognized during the second year of life (age 12–24 months) but may be seen earlier than 12 months if developmental delays are severe, or noted later than 24 months if symptoms are

than 12 months if developmental delays are severe, or noted later than 24 months if symptoms are more subtle. The pattern of onset description might include information about early developmental delays or any losses of social or language skills. In cases where skills have been lost, parents or caregivers may give a history of a gradual or relatively rapid deterioration in social behaviors or language skills. Typically, this would occur between ages 12 and 24 months. Prospective studies

or language skills. Typically, this would occur between ages 12 and 24 months. Prospective studies demonstrate that in most cases the onset of autism spectrum disorder is associated with declines in critical social and communication behaviors in the first 2 years of life. Such declines in functioning are rare in other neurodevelopmental disorders and may be an especially useful indicator of the presence of autism spectrum disorder. In rare cases, there is developmental regression occurring

presence of autism spectrum disorder. In rare cases, there is developmental regression occurring after at least 2 years of normal development (previously described as childhood disintegrative disorder), which is much more unusual and warrants more extensive medical investigation (i.e., continuous spike and waves during slow-wave sleep syndrome and Landau-Kleffner syndrome). Often included in these encephalopathic conditions are losses of skills beyond social communication (e.g., loss of

in these encephalopathic conditions are losses of skills beyond social communication (e.g., loss of self-care, toileting, motor skills) (see also Rett syndrome in the section “Differential Diagnosis” for this disorder). First symptoms of autism spectrum disorder frequently involve delayed language development, often accompanied by lack of social interest or unusual social interactions (e.g., pulling individuals by the hand without any attempt to look at them), odd play patterns (e.g., carrying

individuals by the hand without any attempt to look at them), odd play patterns (e.g., carrying toys around but never playing with them), and unusual communication patterns (e.g., knowing the alphabet but not responding to own name). Deafness may be suspected but is typically ruled out. During the second year, odd and repetitive behaviors and the absence of typical play become more apparent. Since many typically developing young children have strong preferences and enjoy repetition (e.g.,

Since many typically developing young children have strong preferences and enjoy repetition (e.g., eating the same foods, watching the same video multiple times), distinguishing restricted and repetitive behaviors that are diagnostic of autism spectrum disorder can be difficult in preschoolers. The clinical distinction is based on the type, frequency, and intensity of the behavior (e.g., a child who daily lines up objects for hours and is very distressed if any item is moved).

Autism spectrum disorder is not a degenerative disorder, and it is typical for learning and compensation to continue throughout life. Symptoms are often most marked in early childhood and early school years, with developmental gains typical in later childhood in at least some areas (e.g., increased interest in social interaction). A small proportion of individuals deteriorate behaviorally during adolescence, whereas most others improve. While it was once the case that only a minority of

during adolescence, whereas most others improve. While it was once the case that only a minority of individuals with autism spectrum disorder lived and worked independently in adulthood, as diagnosis of autism spectrum disorder is made more frequently in those who have superior language and intellectual abilities, more individuals are able to find a niche that matches their special interests and skills and thus are productively employed. Access to vocational rehabilitation services

and skills and thus are productively employed. Access to vocational rehabilitation services significantly improves competitive employment outcomes for transition-age youth with autism spectrum disorder. In general, individuals with lower levels of impairment may be better able to function independently. However, even these individuals may remain socially naive and vulnerable, have difficulties organizing practical demands without aid, and are prone to anxiety and depression. Many adults report

practical demands without aid, and are prone to anxiety and depression. Many adults report using compensation strategies and coping mechanisms to mask their difficulties in public but suffer from the stress and effort of maintaining a socially acceptable facade. Relatively little is known about old age in autism spectrum disorder, but higher rates of co-occurring medical conditions have been documented in the literature. Some individuals come for first diagnosis in adulthood, perhaps prompted

in the literature. Some individuals come for first diagnosis in adulthood, perhaps prompted by the diagnosis of autism in a child in the family or a breakdown of relations at work or home. Obtaining detailed developmental history in such cases may be difficult, and it is important to consider self-reported difficulties. Where clinical observation suggests criteria are currently met, autism spectrum disorder may be diagnosed, particularly if supported by a history of poor social and

spectrum disorder may be diagnosed, particularly if supported by a history of poor social and communication skills in childhood. A compelling report (by parents or another relative) that the individual had ordinary and sustained reciprocal friendships and good nonverbal communication skills throughout childhood would significantly lessen the likelihood of a diagnosis of autism spectrum disorder; however, ambiguous or absent developmental information in itself is not sufficient to rule out a

however, ambiguous or absent developmental information in itself is not sufficient to rule out a diagnosis of autism spectrum disorder. Manifestations of the social and communication impairments and restricted/repetitive behaviors that define autism spectrum disorder are clear in the developmental period. In later life, intervention or compensation, as well as current supports, may mask these difficulties in at least some contexts. Overall, symptoms remain sufficient to cause current impairment

in at least some contexts. Overall, symptoms remain sufficient to cause current impairment in social, occupational, or other important areas of functioning.

Risk and Prognostic Factors The best established prognostic factors for individual outcome within autism spectrum disorder are presence or absence of associated intellectual developmental disorder and language impairment (e.g., functional language by age 5 years is a good prognostic sign) and additional mental health problems. Epilepsy, as a comorbid diagnosis, is associated with greater intellectual disability and lower verbal ability.

Environmental. A variety of risk factors for neurodevelopmental disorders, such as advanced parental age, extreme prematurity, or in utero exposures to certain drugs or teratogens like valproic acid, may broadly contribute to risk of autism spectrum disorder.

Genetic and physiological. Heritability estimates for autism spectrum disorder have ranged from 37% to higher than 90%, based on twin concordance rates, and a more recent five-country cohort estimated heritability at 80%. Currently, as many as 15% of cases of autism spectrum disorder appear to be associated with a known genetic mutation, with different de novo copy number variants or de novo mutations in specific genes associated with the disorder in different families. However, even when a

in specific genes associated with the disorder in different families. However, even when a known genetic mutation is associated with autism spectrum disorder, it does not appear to be fully penetrant (i.e., not all individuals with that same genetic abnormality will develop autism spectrum disorder). Risk for the majority of cases appears to be polygenic, with perhaps hundreds of genetic loci making relatively small contributions. Whether these findings apply to all racial/ethnic populations

relatively small contributions. Whether these findings apply to all racial/ethnic populations equally is unclear, given the limited inclusion of communities of color in genetic research.

Culture-Related Diagnostic Issues Cultural differences exist in norms for social interaction, nonverbal communication, and relationships, but individuals with autism spectrum disorder are markedly impaired against the norms for their cultural context. Culture influences the perception of autistic behaviors, the perceived salience of some behaviors over others, and the expectations for child behavior and parenting practices. Considerable discrepancies are found in age at diagnosis of autism

and parenting practices. Considerable discrepancies are found in age at diagnosis of autism spectrum disorder in children from diverse ethnoracial backgrounds; most studies find delayed diagnosis among socially oppressed ethnic and racialized children. In addition to being diagnosed later, African American children are more often misdiagnosed with adjustment or conduct disorder than are White children.

Sex- and Gender-Related Diagnostic Issues Autism spectrum disorder is diagnosed three to four times more often in males than in females, and on average, age at diagnosis is later in females. In clinic samples, females tend to be more likely to show accompanying intellectual developmental disorder as well as epilepsy, suggesting that girls without intellectual impairments or language delays may go unrecognized, perhaps because of subtler manifestation of social and communication difficulties.

go unrecognized, perhaps because of subtler manifestation of social and communication difficulties. In comparison with males with autism spectrum disorder, females may have better reciprocal conversation, and be more likely to share interests, to integrate verbal and nonverbal behavior, and to modify their behavior by situation, despite having similar social understanding difficulties as males. Attempting to hide or mask autistic behavior (e.g., by copying the dress, voice, and manner of

Attempting to hide or mask autistic behavior (e.g., by copying the dress, voice, and manner of socially successful women) may also make diagnosis harder in some females. Repetitive behaviors may be somewhat less evident in females than in males, on average, and special interests may have a more social (e.g., a singer, an actor) or “normative” focus (e.g., horses), while remaining unusual in their intensity. Relative to the general population, rates of gender variance have been reported to be

intensity. Relative to the general population, rates of gender variance have been reported to be increased in autism spectrum disorder, with higher variance in females compared with males.

Association With Suicidal Thoughts or Behavior Individuals with autism spectrum disorder are at greater risk for suicide death compared with those without autism spectrum disorder. Children with autism spectrum disorder who had impaired social communication had a higher risk of self-harm with suicidal intent, suicidal thoughts, and suicide plans by age 16 years as compared with those without impaired social communication. Adolescents and young adults with autism spectrum disorder have an

impaired social communication. Adolescents and young adults with autism spectrum disorder have an increased risk of suicide attempts compared with age- and sex-matched control subjects, even after adjustments for demographic factors and psychiatric comorbidities.

Functional Consequences of Autism Spectrum Disorder In young children with autism spectrum disorder, lack of social and communication abilities may hamper learning, especially learning through social interaction or in settings with peers. In the home, insistence on routines and aversion to change, as well as sensory sensitivities, may interfere with eating and sleeping and make routine care (e.g., haircuts, dental work) extremely difficult. Adaptive skills are typically below measured IQ.

(e.g., haircuts, dental work) extremely difficult. Adaptive skills are typically below measured IQ. Extreme difficulties in planning, organization, and coping with change negatively impact academic achievement, even for students with above-average intelligence. During adulthood, these individuals may have difficulties establishing independence because of continued rigidity and difficulty with novelty. Many individuals with autism spectrum disorder, even without intellectual developmental

novelty. Many individuals with autism spectrum disorder, even without intellectual developmental disorder, have poor adult psychosocial functioning as indexed by measures such as independent living and gainful employment. Functional consequences in old age are unknown, but social isolation and communication problems (e.g., reduced help-seeking) are likely to have consequences for health in older adulthood. Co-occurring intellectual developmental disorder, epilepsy, mental disorders, and chronic

Co-occurring intellectual developmental disorder, epilepsy, mental disorders, and chronic medical conditions may be associated with a higher risk of premature mortality for individuals with autism spectrum disorder. Deaths from injury and poisoning are higher than for the general population, as are deaths from suicide. Drowning is the leading cause of accidental death in children with autism spectrum disorder.

Differential Diagnosis  Attention-deficit/hyperactivity disorder. Abnormalities of attention (overly focused or easily distracted) are common in individuals with autism spectrum disorder, as is hyperactivity. Moreover, some individuals with ADHD may exhibit social communication deficits such as interrupting others, speaking too loudly, and not respecting personal space. Although potentially difficult to discriminate ADHD from autism spectrum disorder, the developmental course and absence of

to discriminate ADHD from autism spectrum disorder, the developmental course and absence of restricted, repetitive behaviors and unusual interests in ADHD help in differentiating the two conditions. A concurrent diagnosis of ADHD should be considered when attentional difficulties or hyperactivity exceeds that typically seen in individuals of comparable mental age, and ADHD is one of the most common comorbidities in autism spectrum disorder.

Intellectual developmental disorder (intellectual disability) without autism spectrum disorder.

Intellectual developmental disorder without autism spectrum disorder may be difficult to differentiate from autism spectrum disorder in very young children. Individuals with intellectual developmental disorder who have not developed language or symbolic skills also present a challenge for differential diagnosis, since repetitive behavior often occurs in such individuals as well. A diagnosis of autism spectrum disorder in an individual with intellectual developmental disorder is appropriate when

spectrum disorder in an individual with intellectual developmental disorder is appropriate when social communication and interaction are significantly impaired relative to the developmental level of the individual’s nonverbal skills (e.g., fine motor skills, nonverbal problem solving). In contrast, intellectual developmental disorder is the appropriate diagnosis when there is no apparent discrepancy between the level of social communicative skills and other intellectual skills.

Language disorders and social (pragmatic) communication disorder. In some forms of language disorder, there may be problems of communication and some secondary social difficulties. However, specific language disorder is not usually associated with abnormal nonverbal communication, nor with the presence of restricted, repetitive patterns of behavior, interests, or activities. When an individual shows impairment in social communication and social interactions but does not show restricted and

shows impairment in social communication and social interactions but does not show restricted and repetitive behavior or interests, criteria for social (pragmatic) communication disorder, instead of autism spectrum disorder, may be met. The diagnosis of autism spectrum disorder supersedes that of social (pragmatic) communication disorder whenever the criteria for autism spectrum disorder are met, and care should be taken to enquire carefully regarding past or current restricted/repetitive

met, and care should be taken to enquire carefully regarding past or current restricted/repetitive behavior.

Selective mutism. In selective mutism, early development is not typically disturbed. The affected child usually exhibits appropriate communication skills in certain contexts and settings. Even in settings where the child is mute, social reciprocity is not impaired, nor are restricted or repetitive patterns of behavior present.

Stereotypic movement disorder. Motor stereotypies are among the diagnostic characteristics of autism spectrum disorder, so an additional diagnosis of stereotypic movement disorder is not given when such repetitive behaviors are better explained by the presence of autism spectrum disorder. However, when stereotypies cause self-injury and become a focus of treatment, both diagnoses may be appropriate.

Rett syndrome. Disruption of social interaction may be observed during the regressive phase of Rett syndrome (typically between ages 1 and 4 years); thus, a substantial proportion of affected young girls may have a presentation that meets diagnostic criteria for autism spectrum disorder. However, after this period, most individuals with Rett syndrome improve their social communication skills, and autistic features are no longer a major area of concern. Consequently, autism spectrum disorder

and autistic features are no longer a major area of concern. Consequently, autism spectrum disorder should be considered only when all diagnostic criteria are met.

Symptoms associated with anxiety disorders. The overlap of anxiety symptoms with the core symptoms of autism spectrum disorder can make the classification of anxiety symptoms in autism spectrum disorder challenging. For example, social withdrawal and repetitive behaviors are core features of autism spectrum disorder but may also be expressions of anxiety. The most common anxiety disorders in autism spectrum disorder are specific phobia (in up to 30% of cases), and social anxiety and

in autism spectrum disorder are specific phobia (in up to 30% of cases), and social anxiety and agoraphobia (in as many as 17% of cases).

Obsessive-compulsive disorder. Repetitive behavior is a defining feature of both obsessive-compulsive disorder and autism spectrum disorder. In both conditions, repetitive behaviors are considered to be inappropriate or odd. In obsessive-compulsive disorder, intrusive thoughts are often related to contamination, organization, or sexual or religious themes. Compulsions are performed in response to these intrusive thoughts in attempts to relieve anxiety. In autism spectrum disorder, repetitive

to these intrusive thoughts in attempts to relieve anxiety. In autism spectrum disorder, repetitive behaviors classically include more stereotyped motor behaviors, such as hand flapping and finger shaking or more complex behaviors, such as insistence on routines or lining up objects. Contrary to obsessive-compulsive disorder, repetitive behaviors in autism spectrum disorder may be perceived as pleasurable and reinforcing.

Schizophrenia. Schizophrenia with childhood onset usually develops after a period of normal, or near normal, development. A prodromal state has been described in which social impairment and atypical interests and beliefs occur, which could be confused with the social deficits and restricted fixated interests seen in autism spectrum disorder. Hallucinations and delusions, which are defining features of schizophrenia, are not features of autism spectrum disorder. However, clinicians must take

of schizophrenia, are not features of autism spectrum disorder. However, clinicians must take into account the potential for individuals with autism spectrum disorder to be concrete in their interpretation of questions regarding the key features of schizophrenia (e.g., “Do you hear voices when no one is there?” ”Yes [on the radio]”). Autism spectrum disorder and schizophrenia can co-occur, and both should be diagnosed when criteria are met.

Personality disorders. In adults without intellectual developmental disorder or significant language impairment, some behaviors associated with autism spectrum disorder may be perceived by others as symptoms of narcissistic, schizotypal, or schizoid personality disorder. Schizotypal personality disorder in particular may intersect with autism spectrum disorder in unusual preoccupations and perceptual experiences, odd thinking and speech, constricted affect and social anxiety, lack of close

experiences, odd thinking and speech, constricted affect and social anxiety, lack of close friends, and odd or eccentric behavior. The early developmental course of autism spectrum disorder (lack of imaginative play, restricted/repetitive behavior, sensory sensitivities) is most helpful in differentiating it from personality disorders.

Comorbidity Autism spectrum disorder is frequently associated with intellectual developmental disorder and language disorder (i.e., an inability to comprehend and construct sentences with proper grammar). Specific learning difficulties (literacy and numeracy) are common, as is developmental coordination disorder. Psychiatric comorbidities also co-occur in autism spectrum disorder. About 70% of individuals with autism spectrum disorder may have one comorbid mental disorder, and 40% may have two

with autism spectrum disorder may have one comorbid mental disorder, and 40% may have two or more comorbid mental disorders. Anxiety disorders, depression, and ADHD are particularly common. Avoidant/restrictive food intake disorder is a fairly frequent presenting feature of autism spectrum disorder, and extreme and narrow food preferences may persist. Among individuals who are nonverbal or have language deficits, observable signs such as changes in sleep or eating and increases in challenging

language deficits, observable signs such as changes in sleep or eating and increases in challenging behavior should trigger an evaluation for anxiety or depression, as well as for potential pain or discomfort from undiagnosed medical or dental problems. Medical conditions commonly associated with autism spectrum disorder

Autism spectrum disorder Essential (required) features •	 Persistent deficits in initiating and sustaining social communication and reciprocal social interactions that are outside the expected range of typical functioning based on the individual’s age and level of intellectual development are required for diagnosis. Specific manifestations of these deficits vary according to chronological age, verbal and intellectual ability, and disorder severity. Manifestations may include limitations in the

and intellectual ability, and disorder severity. Manifestations may include limitations in the following:

•	 understanding of, interest in, or inappropriate responses to the verbal or nonverbal social communications of others;
•	 integration of spoken language with typical complimentary nonverbal cues, such as eye contact, gestures, facial expressions and body language (these nonverbal behaviours may also be reduced in frequency or intensity);
•	 understanding and use of language in social contexts and ability to initiate and sustain reciprocal social conversations;

•	 social awareness, leading to behaviour that is not appropriately modulated according to the social context;
•	 ability to imagine and respond to the feelings, emotional states and attitudes of others;

•	 ability to imagine and respond to the feelings, emotional states and attitudes of others;
•	 mutual sharing of interests; •	 ability to make and sustain typical peer relationships. •	 Persistent restricted, repetitive and inflexible patterns of behaviour, interests or activities that are clearly atypical or excessive for the individual’s age and sociocultural context are an essential component. These may include:

•	 lack of adaptability to new experiences and circumstances, with associated distress, that can be evoked by trivial changes to a familiar environment or in response to unanticipated events;
•	 inflexible adherence to particular routines – for example, these may be geographical, such as following familiar routes, or may require precise timing such as mealtimes or transport;

•	 excessive adherence to rules (e.g. when playing games); •	 excessive and persistent ritualized patterns of behaviour (e.g. preoccupation with lining up or sorting objects in a particular way) that serve no apparent external purpose;
•	 repetitive and stereotyped motor movements such as whole-body movements (e.g. rocking), atypical gait (e.g. walking on tiptoes), unusual hand or finger movements and posturing (these behaviours are particularly common during early childhood);

•	 persistent preoccupation with one or more special interests, parts of objects or specific types of stimuli (including media), or an unusually strong attachment to particular objects (excluding typical comforters);
•	 lifelong excessive and persistent hypersensitivity or hyposensitivity to sensory stimuli or unusual interest in a sensory stimulus, which may include actual or anticipated sounds, light, textures (especially clothing and food), odours and tastes, heat, cold or pain.

•	 The onset of the disorder occurs during the developmental period – typically in early childhood – but characteristic symptoms may not become fully manifest until later, when social demands exceed limited capacities.

•	 The symptoms result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning. Some individuals with autism spectrum disorder are able to function adequately in many contexts through exceptional effort, such that their deficits may not be apparent to others. A diagnosis of autism spectrum disorder is still appropriate in such cases.

Specifiers for characterizing features within the autism spectrum These specifiers enable the identification of co-occurring limitations in intellectual and functional language abilities, which are important factors in the appropriate individualization of support, selection of interventions and treatment planning for individuals with autism spectrum disorder. A specifier is also provided for loss of previously acquired skills, which is a feature of the developmental history of a small

for loss of previously acquired skills, which is a feature of the developmental history of a small proportion of individuals with autism spectrum disorder.

Co-occurring disorder of intellectual development Individuals with autism spectrum disorder may exhibit limitations in intellectual abilities. If present, a separate diagnosis of disorder of intellectual development should be assigned, using the appropriate category to designate severity (i.e. mild, moderate, severe, profound, provisional). Because social deficits are a core feature of autism spectrum disorder, the assessment of adaptive behaviour as a part of the diagnosis of a co-occurring

disorder, the assessment of adaptive behaviour as a part of the diagnosis of a co-occurring disorder of intellectual development should place greater emphasis on the intellectual, conceptual and practical domains of adaptive functioning than on social skills.

If no co-occurring diagnosis of disorder of intellectual development is present, the following specifier for the autism spectrum disorder diagnosis should be applied:
• without disorder of intellectual development. If there is a co-occurring diagnosis of disorder of intellectual development, the following specifier for the autism spectrum disorder diagnosis should be applied, in addition to the appropriate diagnostic code for the co-occurring disorder of intellectual development:

• with disorder of intellectual development.  Degree of functional language impairment The degree of impairment in functional language (spoken or signed) should be designated with a second specifier. Functional language refers to the capacity of the individual to use language for instrumental purposes (e.g. to express personal needs and desires). This specifier is intended to reflect primarily the verbal and nonverbal expressive language deficits present in some individuals with autism spectrum

verbal and nonverbal expressive language deficits present in some individuals with autism spectrum disorder, and not the pragmatic language deficits that are a core feature of autism spectrum disorder.

The following specifiers should be applied to indicate the extent of functional language impairment (spoken or signed) relative to the individual’s age:
• with mild or no impairment of functional language • with impaired functional language (i.e. not able to use more than single words or simple phrases)

• with complete, or almost complete, absence of functional language.  Table 6.5. Diagnostic codes for autism spectrum disorder |                                         | With mild or no impairment of functional language | With impaired functional language | With complete, or almost complete, absence of functional language |

|-----------------------------------------|---------------------------------------------------|-----------------------------------|--------------------------------------------------------------------|
| Without disorder of intellectual development | 6A02.0                                            | 6A02.2                            | _____                                                              |

| With disorder of intellectual development   | 6A02.1                                            | 6A02.3                            | 6A02.5                                                             |
 6A02.Y Other specified autism spectrum disorder can be used if the above parameters do not apply.
6A02.Z Autism spectrum disorder, unspecified, can be used if the above parameters are unknown.

Loss of previously acquired skills A small proportion of individuals with autism spectrum disorder may present with a loss of previously acquired skills. This regression typically occurs during the second year of life and most often involves language use and social responsiveness. Loss of previously acquired skills is rarely observed after 3 years of age. If it occurs after age 3, it is more likely to involve loss of cognitive and adaptive skills (e.g. loss of bowel and bladder control,

likely to involve loss of cognitive and adaptive skills (e.g. loss of bowel and bladder control, impaired sleep), regression of language and social abilities, and increasing emotional and behavioural disturbances.

There are two alternative specifiers to denote whether or not loss of previously acquired skills is an aspect of the clinical history, where x corresponds to the final digit shown in Table 6.5:

• 6A02.x0 without loss of previously acquired skills • 6A02.x1 with loss of previously acquired skills.  Additional clinical features •	 Common symptom presentations of autism spectrum disorder in young children are parental or caregiver concerns about intellectual or other developmental delays (e.g. problems in language and motor coordination). When there is no significant impairment of intellectual functioning, clinical services may only be sought later (e.g. due to behaviour or social

functioning, clinical services may only be sought later (e.g. due to behaviour or social problems when starting school). In middle childhood, there may be prominent symptoms of anxiety, including social anxiety disorder, school refusal and specific phobia. During adolescence and adulthood, depressive disorders are often a presenting feature.

•	 Co-occurrence of autism spectrum disorder with other mental, behavioural and neurodevelopmental disorders is common across the lifespan. In a substantial proportion of cases – particularly in adolescence and adulthood – it is a co-occurring disorder that first brings an individual with autism spectrum disorder to clinical attention.

•	 Pragmatic language difficulties may manifest as an overly literal understanding of others’ speech, speech that lacks normal prosody and emotional tone and therefore appears monotonous, lack of awareness of the appropriateness of their choice of language in particular social contexts, or pedantic precision in the use of language.

•	 Social naivety, especially during adolescence, can lead to exploitation by others – a risk that may be enhanced by the use of social media without adequate supervision.

•	 Profiles of specific cognitive skills in autism spectrum disorder as measured by standardized assessments may show striking and unusual patterns of strengths and weaknesses that are highly variable from individual to individual. These deficits can affect learning and adaptive functioning to a greater extent than would be predicted from the overall scores on measures of verbal and nonverbal intelligence.

•	 Self-injurious behaviours (e.g. hitting one’s face, head banging) occur more often in individuals with co-occurring disorder of intellectual development.

•	 Some young individuals with autism spectrum disorder – especially those with a co-occurring disorder of intellectual development – develop epilepsy or seizures during early childhood with a second increase in prevalence during adolescence. Catatonic states have also been described. A number of medical disorders such as tuberous sclerosis, chromosomal abnormalities including fragile X syndrome, cerebral palsy, early-onset epileptic encephalopathies and neurofibromatosis are associated with

cerebral palsy, early-onset epileptic encephalopathies and neurofibromatosis are associated with autism spectrum disorder with or without a co-occurring disorder of intellectual development. Genomic deletions, duplications and other genetic abnormalities are increasingly described in individuals with autism spectrum disorder, some of which may be important for genetic counselling. Prenatal exposure to valproate is also associated with an increased risk of autism spectrum disorder.

•	 Some individuals with autism spectrum disorder are capable of functioning adequately by making an exceptional effort to compensate for their symptoms during childhood, adolescence or adulthood. Such sustained effort, which may be more typical of affected females, can have a deleterious impact on mental health and well-being.

Boundary with normality (threshold)  Social interaction skills Typically developing individuals vary in the pace and extent to which they acquire and master skills of reciprocal social interaction and social communication. A diagnosis of autism spectrum disorder should only be considered if there is marked and persistent deviation from the expected range of abilities and behaviours in these domains given the individual’s age, level of intellectual functioning and sociocultural context. Some

given the individual’s age, level of intellectual functioning and sociocultural context. Some individuals may exhibit limited social interaction due to shyness (i.e. feelings of awkwardness or fear in new situations or with unfamiliar people) or behavioural inhibition (i.e. being slow to approach or to “warm up” to new people and situations). Limited social interactions in shy or behaviourally inhibited children, adolescents or adults are not indicative of autism spectrum disorder. Shyness is

children, adolescents or adults are not indicative of autism spectrum disorder. Shyness is differentiated from autism spectrum disorder by evidence of adequate social communication behaviours in familiar situations.

Social communication skills Children vary widely in the age at which they first acquire spoken language and the pace at which their speech and language become firmly established. Most children with early language delay eventually acquire similar language skills to those of their same-age peers. Early language delay alone is not strongly indicative of autism spectrum disorder unless there is also evidence of limited motivation for social communication and limited interaction skills. An

is also evidence of limited motivation for social communication and limited interaction skills. An essential feature of autism spectrum disorder is persistent impairment in the ability to understand and use language appropriately for social communication.

Repetitive and stereotyped behaviours Many children go through phases of repetitive play and highly focused interests as a part of typical development. Unless there is also evidence of impaired reciprocal social interaction and social communication, patterns of behaviour characterized by repetition, routine or restricted interests are not by themselves indicative of autism spectrum disorder.

Course features •	 Although autism spectrum disorder can present clinically at all ages, including during adulthood, it is a lifelong disorder, the manifestations and impact of which are likely to vary according to age, intellectual and language abilities, co-occurring conditions and environmental context.

•	 Restricted and repetitive behaviours persist over time. Specifically, repetitive sensorimotor behaviours appear to be common, consistent and potentially severe. During the school-age years and adolescence, these repetitive sensorimotor behaviours begin to lessen in intensity and number. Insistence on sameness, which is less prevalent, appears to develop during preschool and worsen over time.

Developmental presentations  Infancy Characteristic features may emerge during infancy, although they may only be recognized as indicative of autism spectrum disorder in retrospect. It is usually possible to make the diagnosis of autism spectrum disorder during the preschool period (up to 4 years of age), especially in children exhibiting generalized developmental delay. Plateauing of social communication and language skills and failure to progress in their development is not uncommon. The

communication and language skills and failure to progress in their development is not uncommon. The loss of early words and social responsiveness – i.e. a true regression – with an onset between 1 and 2 years of age is unusual but significant, and rarely occurs after the third year of life. In these cases, the with loss of previously acquired skills specifier should be applied.

Preschool In preschool-aged children, indicators of an autism spectrum disorder diagnosis often include avoidance of mutual eye contact, resistance to physical affection, a lack of social imaginary play, language that is delayed in onset or is precocious but not used for social conversation; social withdrawal, obsessive or repetitive preoccupations, and a lack of social interaction with peers characterized by parallel play or disinterest. Sensory sensitivities to everyday sounds, or to foods,

by parallel play or disinterest. Sensory sensitivities to everyday sounds, or to foods, may overshadow the underlying social communication deficits.

Middle childhood In children with autism spectrum disorder without a disorder of intellectual development, social adjustment difficulties outside the home may not be detected until middle childhood (commonly at school entry) or during adolescence, when social communication problems lead to social isolation from peers. Resistance to engage in unfamiliar experiences and marked reactions to even minor change in routines are typical. Furthermore, excessive focus on detail and rigidity of behaviour

change in routines are typical. Furthermore, excessive focus on detail and rigidity of behaviour and thinking may be significant. Symptoms of anxiety may become evident at this stage of development.

Adolescence By adolescence, the capacity to cope with increasing social complexity in peer relationships at a time of increasingly demanding academic expectations is often overwhelmed. In some individuals with autism spectrum disorder, the underlying social communication deficits may be overshadowed by the symptoms of co-occurring mental and behavioural disorders. Depressive symptoms are often a presenting feature.

Adulthood In adulthood, the capacity for those with autism spectrum disorder to cope with social relationships can become increasingly challenged, and clinical presentation may occur when social demands overwhelm the capacity to compensate. Presenting problems in adulthood may represent reactions to social isolation or the social consequences of inappropriate behaviour. Compensation strategies may be sufficient to sustain dyadic relationships, but are usually inadequate in social groups.

may be sufficient to sustain dyadic relationships, but are usually inadequate in social groups. Special interests, and focused attention, may benefit some individuals in education and employment. Work environments may have to be tailored to the capacities of the individual. A first diagnosis in adulthood may be precipitated by a breakdown in domestic or work relationships. In autism spectrum disorder there is always a history of early childhood social communication and relationship

disorder there is always a history of early childhood social communication and relationship difficulties, although this may only be apparent in retrospect.

Culture-related features •	 Cultural variation exists in norms of social communication and reciprocal social interactions, as well as interests and activities. Therefore, signs of impairment in functioning may differ depending on cultural context. For example, in some societies it may be normative for children may avoid direct eye contact out of deference, which should not be misinterpreted as impairment in social interaction.

Sex- and/or gender-related features •	 Males are four times more likely than females to be diagnosed with autism spectrum disorder.
•	 Females diagnosed with autism spectrum disorder are more frequently diagnosed with co-occurring disorders of intellectual development than males, suggesting that less severe presentations may go undetected. Females tend to demonstrate fewer restricted, repetitive interests and behaviours.

•	 During middle childhood, gender differences in presentation differentially affect functioning. Boys may act out with reactive aggression or other behavioural symptoms when challenged or frustrated. Girls tend to withdraw socially, and react with emotional changes to their social adjustment difficulties.

Boundaries with other disorders and conditions (differential diagnosis)  Boundary with disorders of intellectual development Autism spectrum disorder may be diagnosed in individuals with disorders of intellectual development if deficits in initiating and sustaining social communication and reciprocal social interactions are greater than would be expected based on the individual’s level of intellectual functioning, and if the other diagnostic requirements for autism spectrum disorder are also

functioning, and if the other diagnostic requirements for autism spectrum disorder are also met. In these circumstances, both autism spectrum disorder and the disorder of intellectual development should be assigned, and the with disorder of intellectual development specifier should be applied with the autism spectrum disorder diagnosis. Because autism spectrum disorder inherently involves social deficits, assessment of adaptive behaviour as a part of the diagnosis of a co-occurring disorder of

deficits, assessment of adaptive behaviour as a part of the diagnosis of a co-occurring disorder of intellectual development should place greater emphasis on intellectual functioning and the conceptual and practical domains of adaptive functioning than on social skills. The diagnosis of autism spectrum disorder in individuals with severe and profound disorders of intellectual development is particularly difficult, and requires in-depth and longitudinal assessments. However, the diagnosis may be

difficult, and requires in-depth and longitudinal assessments. However, the diagnosis may be assigned if skills in social reciprocity and communication are significantly impaired relative to the individual’s general level of intellectual ability.

Boundary with developmental language disorder with impairment of mainly pragmatic language

Individuals with developmental language disorder with impairment of mainly pragmatic language exhibit language deficits involving the ability to understand and use language in social contexts (i.e. with pragmatic language impairment). Unlike individuals with autism spectrum disorder, individuals with developmental language disorder are usually able to initiate and respond appropriately to social and emotional cues and to share interests with others, and do not typically exhibit restricted,

and emotional cues and to share interests with others, and do not typically exhibit restricted, repetitive and stereotyped behaviours. An additional diagnosis of developmental language disorder should not be assigned to individuals with autism spectrum disorder based solely on pragmatic language impairment. The other forms of developmental language disorder (i.e. with impairment of receptive and expressive language or with impairment of receptive and expressive language) may be assigned in

and expressive language or with impairment of receptive and expressive language) may be assigned in conjunction with a diagnosis of autism spectrum disorder if language abilities are markedly below what would be expected based on age and level of intellectual functioning.

Boundary with developmental motor coordination disorder Individuals with autism spectrum disorder may be reluctant to participate in tasks requiring complex motor coordination skills, such as ball sports, which is better accounted for by a lack of interest rather than any specific deficits in motor coordination. However, developmental motor coordination disorder and autism spectrum disorder can co-occur, and both diagnoses may be assigned if warranted.

Boundary with attention deficit hyperactivity disorder Specific abnormalities in attention (e.g. being overly focused or easily distracted), impulsivity and physical hyperactivity are often observed in individuals with autism spectrum disorder. However, individuals with attention deficit hyperactivity disorder do not exhibit the persistent deficits in initiating and sustaining social communication and reciprocal social interactions or the persistent restricted, repetitive and inflexible

and reciprocal social interactions or the persistent restricted, repetitive and inflexible patterns of behaviour, interests or activities that are the defining features of autism spectrum disorder. However, autism spectrum disorder and attention deficit hyperactivity disorder can co-occur, and both diagnoses may be assigned if the diagnostic requirements for each are met. Attention deficit hyperactivity disorder symptoms may sometimes dominate the clinical presentation such that some autism

disorder symptoms may sometimes dominate the clinical presentation such that some autism spectrum disorder symptoms are less apparent.

Boundary with stereotyped movement disorder Stereotyped movement disorder is characterized by voluntary, repetitive, stereotyped, apparently purposeless (and often rhythmic) movements that arise during the early developmental period. Although such stereotyped movements are typical in autism spectrum disorder, if they are severe enough to require additional clinical attention – for example, because of self-injury – a co-occurring diagnosis of stereotyped movement disorder may be warranted.

Boundary with schizophrenia The onset of schizophrenia may be associated with prominent social withdrawal, which is either preceded by or results in social impairments that may resemble social deficits seen in autism spectrum disorder. However, unlike autism spectrum disorder, the onset of schizophrenia is typically in adolescence or early adulthood, and is extremely rare prior to puberty. Schizophrenia is differentiated on the basis of the presence of psychotic symptoms (e.g. delusions,

Schizophrenia is differentiated on the basis of the presence of psychotic symptoms (e.g. delusions, hallucinations), as well as a lack of restricted, repetitive and inflexible patterns of behaviour, interests or activities during early childhood typical of autism spectrum disorder.

Boundary with schizotypal disorder Interpersonal difficulties seen in autism spectrum disorder may share some features of schizotypal disorder, such as poor rapport with others and social withdrawal. However, autism spectrum disorder is also characterized by restricted, repetitive and stereotyped patterns of behaviour, interests or activities.

Boundary with social anxiety disorder Social anxiety disorder is associated with limited engagement in social interaction due to marked and excessive fear or anxiety about negatively evaluated by others. Typically, when interacting with familiar others or in social situations that do not provoke significant anxiety, there is no evidence of impairment. Individuals with autism spectrum disorder may experience social anxiety, but they also exhibit more pervasive deficits in initiating and

may experience social anxiety, but they also exhibit more pervasive deficits in initiating and sustaining social communication and reciprocal social interactions than are typically observed in social anxiety disorder. Persistent restricted, repetitive and inflexible patterns of behaviour, interests or activities are not features of social anxiety disorder.

Boundary with selective mutism Selective mutism is characterized by normal use of language and patterns of social communication in specific environments (such as the home), but not in others (such as at school). In autism spectrum disorder, a reluctance to communicate may be observed in some social circumstances, but deficits in initiating and sustaining social communication and reciprocal social interactions and persistent restricted, repetitive and inflexible patterns of behaviour, interests

interactions and persistent restricted, repetitive and inflexible patterns of behaviour, interests or activities are evident across all situations and contexts.

Boundary with obsessive-compulsive disorder Obsessive-compulsive disorder is characterized by persistent repetitive thoughts, images, or impulses/urges (i.e. obsessions) and/or repetitive behaviours (i.e. compulsions) that the individual feels driven to perform in response to an obsession, according to rigid rules, to reduce anxiety or to achieve a sense of “completeness”. These symptoms may be difficult to distinguish from restricted, repetitive and inflexible patterns of behaviour, interests

to distinguish from restricted, repetitive and inflexible patterns of behaviour, interests or activities that are characteristic of autism spectrum disorder. Unlike those with autism spectrum disorder, it is more common for individuals with obsessive-compulsive disorder consciously to resist their impulsive urges to perform compulsive behaviours (e.g. by performing alternate tasks), though adolescents and adults with autism spectrum disorder may also try to suppress specific behaviours that

and adults with autism spectrum disorder may also try to suppress specific behaviours that they realize are socially undesirable. Autism spectrum disorder can also be distinguished from obsessive-compulsive disorder by its characteristic deficits in initiating and sustaining social communication and reciprocal social interactions, which are not features of obsessive-compulsive disorder.

Boundary with reactive attachment disorder Reactive attachment disorder is characterized by inhibited emotionally withdrawn behaviour exhibited towards adult caregivers, including a failure to approach a discriminated, preferred attachment figure for comfort, support, protection or nurturance. The diagnosis of reactive attachment disorder requires evidence of a history of severe neglect or maltreatment by the primary caregiver or other forms of severe social deprivation (e.g. certain types of

by the primary caregiver or other forms of severe social deprivation (e.g. certain types of institutionalization). Some individuals reared under conditions of severe deprivation in institutional settings exhibit autistic-like features, including difficulties in social reciprocity and restricted, repetitive and inflexible patterns of behaviour, interests or activities. Also referred to as “quasi-autism”, affected individuals are differentiated from those with autism spectrum disorder based on

affected individuals are differentiated from those with autism spectrum disorder based on significant improvement of autism-like features when the child is moved to a more nurturing environment. Differentiation between reactive attachment disorder and autism spectrum disorder is difficult when no reliable evidence is available of intact social and communicative development prior to the onset of abuse or neglect.

Boundary with disinhibited social engagement disorder Disinhibited social engagement disorder is characterized by persistent indiscriminate social approaches to unfamiliar adults and peers, a pattern of behaviour that may also be seen in some children with autism spectrum disorder. The diagnosis of disinhibited social engagement disorder requires evidence of a history of severe neglect or maltreatment by the primary caregiver or other forms of severe social deprivation (e.g. certain types of

by the primary caregiver or other forms of severe social deprivation (e.g. certain types of institutionalization). As in reactive attachment disorder, disinhibited social engagement disorder may be associated with generalized deficits in social understanding and social communication. Although they may occur, restricted, repetitive and inflexible patterns of behaviour, interests or activities are not typical features of disinhibited social engagement disorder. Evidence of a significant reduction

typical features of disinhibited social engagement disorder. Evidence of a significant reduction in symptoms when the child is provided a more nurturing environment suggests that disinhibited social engagement disorder is the appropriate diagnosis.

Boundary with avoidant-restrictive food intake disorder Individuals with avoidant-restrictive food intake disorder sometimes restrict their food intake based on food’s sensory characteristics such as smell, taste, temperature, texture or appearance. Individuals with autism spectrum disorder may also restrict intake of certain foods because of their sensory characteristics or because of inflexible adherence to particular routines. However, autism spectrum disorder is also characterized by

adherence to particular routines. However, autism spectrum disorder is also characterized by persistent deficits in initiating and sustaining social communication and reciprocal social interactions and persistent restricted, repetitive and inflexible patterns of behaviour, interests or activities that are unrelated to food. If a pattern of restricted eating in an individual with autism spectrum disorder has caused significant weight loss or other health consequences, or is specifically

disorder has caused significant weight loss or other health consequences, or is specifically associated with significant functional impairment, an additional diagnosis of avoidant-restrictive food intake disorder may be assigned.

Boundary with oppositional defiant disorder Oppositional defiant disorder is characterized by a pattern of markedly noncompliant, defiant and disobedient disruptive behaviour that is not typical for individuals of comparable age and developmental level. Individuals with oppositional defiant disorder do not exhibit the social communication deficits or restricted, repetitive and inflexible patterns of behaviour, interests or activities that are characteristic of autism spectrum disorder.

patterns of behaviour, interests or activities that are characteristic of autism spectrum disorder. However, oppositional or “demand avoidant” behaviour may be prominent in some children with autism spectrum disorder, whether or not they have accompanying intellectual or functional language impairments, and may sometimes be the presenting feature in school-aged children with autism spectrum disorder. Disruptive behaviour with aggressive outbursts (explosive rages) may also be a prominent

disorder. Disruptive behaviour with aggressive outbursts (explosive rages) may also be a prominent feature of autism spectrum disorder. Among individuals with autism spectrum disorder, such outbursts are often associated with a specific trigger (e.g. a change in routine, aversive sensory stimulation, anxiety or rigidity when the individual’s thoughts or behaviour sequences are interrupted) rather than reflecting an intention to be defiant, provocative or spiteful, as is more typical of

rather than reflecting an intention to be defiant, provocative or spiteful, as is more typical of oppositional defiant disorder.

Boundary with personality disorder Personality disorder is a pervasive disturbance in how an individual experiences and thinks about the self, others and the world, manifested in maladaptive patterns of cognition, emotional experience, emotional expression and behaviour. The maladaptive patterns are relatively inflexible, manifesting across a range of personal and social situations; relatively stable over time; and of long duration. They are associated with significant problems in psychosocial

over time; and of long duration. They are associated with significant problems in psychosocial functioning that are particularly evident in interpersonal relationships. The difficulties some individuals with autism spectrum disorder exhibit in initiating and maintaining relationships because of their limited skills in social communication and reciprocal social interactions may resemble those seen in some individuals with personality disorder. However, unlike autism spectrum disorder, persistent

in some individuals with personality disorder. However, unlike autism spectrum disorder, persistent restricted, repetitive and inflexible patterns of behaviour, interests or activities with onset in early childhood are not characteristic features of personality disorder.

Boundary with primary tics and tic disorders including Tourette syndrome Sudden, rapid, non-rhythmic and recurrent movements or vocalizations occur in primary tics and tic disorders, which may resemble repetitive and stereotyped motor movements in autism spectrum disorder. Unlike autism spectrum disorder, tics in primary tics and tic disorders tend to be less stereotyped, are often accompanied by premonitory sensory urges, last for a shorter period, tend to emerge later in life, and are not

by premonitory sensory urges, last for a shorter period, tend to emerge later in life, and are not experienced by the individual as soothing.

Boundary with diseases of the nervous system and other medical conditions classified elsewhere

Loss of previously acquired skills in language and social communication in the second year of life is reported in some children with autism spectrum disorder, but this rarely occurs after the age of 3 years. Diseases of the nervous system and other medical conditions associated with regression (e.g. acquired epileptic aphasia or Landau-Kleffner syndrome, autoimmune encephalitis, Rett syndrome) are differentiated from autism spectrum disorder with loss of previously acquired skills on the basis

differentiated from autism spectrum disorder with loss of previously acquired skills on the basis of an early history of relatively normal social and language development, and by the characteristic neurological features of these disorders that are not typical of autism spectrum disorder.

Boundary with secondary neurodevelopmental syndrome Autistic features may become manifest in the context of acquired medical conditions, such as encephalitis. Identifying accurately whether the symptoms are secondary to another medical condition or represent the exacerbation of pre-existing autism spectrum disorder may have implications for both immediate management and prognosis. When autistic symptoms are attributable to another medical condition, a diagnosis of secondary neurodevelopmental

symptoms are attributable to another medical condition, a diagnosis of secondary neurodevelopmental syndrome rather than autism spectrum disorder may be assigned.

Developmental learning disorder  Essential (required) features •	 The presence of significant limitations in learning academic skills of reading, writing or arithmetic, resulting in a skill level markedly below what would be expected based on age is required for diagnosis. Limitations in learning are manifest, despite appropriate academic instruction in the relevant areas. The limitations may be restricted to a single component of a skill (e.g. an inability to master basic numeracy, or to

be restricted to a single component of a skill (e.g. an inability to master basic numeracy, or to decode single words accurately and fluently) or may affect all reading, writing and arithmetic. Ideally, limitations are measured using appropriately normed and standardized tests.

•	 Onset of the limitations typically occurs during the early school years, but in some individuals may not be identified until later in life, including into adulthood, when performance demands related to learning exceed limited capacities.
•	 The limitations are not attributable to external factors, such as economic or environmental disadvantage, or lack of access to educational opportunities.

•	 The learning difficulties are not better accounted for by a disorder of intellectual development or another neurodevelopmental disorder, or by another condition such as a motor disorder or a sensory disorder of vision or hearing.
•	 The learning difficulties result in significant impairment in the individual’s academic, occupational or other important areas of functioning. If functioning is maintained, it is only through significant additional effort.

CHAPTER 1 UNDERSTANDING THIS THING CALLED AUTISM Katherine Runswick-Cole  INTRODUCTION It seems popular these days to ‘go on a journey’. In the UK, television schedules are awash with reality shows where competitors take to the dance floor, or to the ice rink, or even to the jungle, to construct a ‘journey narrative’ in their efforts to win the show. Here, I want to sketch out a different kind of journey – with no prize to win, apart from, perhaps, a shift in understanding. I’m going to talk

of journey – with no prize to win, apart from, perhaps, a shift in understanding. I’m going to talk about my journey with autism. This is, I suppose, a theoretical journey, a journey that begins with assumptions of autism’s pathology, tragedy, deficit and lack but then moves through a rejection of medicalised and tragic discourses of impairment, to a continuing love affair with the social model of disability (Goodley 2011) through a brief flirtation with the neurodiversity movement (Ortega

of disability (Goodley 2011) through a brief flirtation with the neurodiversity movement (Ortega 2009) and finally, and controversially perhaps, to my current view that autism is a contemporary cultural phenomenon so that labelling people with it is no longer helpful (Goodley and Runswick-Cole 2012; Mallett and Runswick-Cole 2012; Timimi, Gardner and McCabe 2010).

THEORETICAL JOURNEY Theoretical journeys are sometimes seen as controversial in my academic disciplinary home (disability studies), particularly in a context of economic austerity where there is a strong contemporary urge by some within academia to get back to either the material ‘basics’ of disablism (Barnes 2003) or to recognise the ‘devastating reality’ of impairment (Shakespeare 2006). And yet, it is my personal and professional relationship with what I describe as this thing called

And yet, it is my personal and professional relationship with what I describe as this thing called ‘autism’ (Mallett and Runswick-Cole 2012) that drives the writing of this theoretical journey, not simply a love of theory for theory’s sake, but a desire to harness theory for its disruptive and transformative potential in people’s lives (Goodley and Runswick-Cole 2014). My relationship with autism is framed by my position both as a mother of a child labelled with autism and as a university

is framed by my position both as a mother of a child labelled with autism and as a university researcher in the field of critical disability studies in the UK.

ETHICS I begin my journey, however, with a dilemma. As I describe below, my journey with autism pre-dates the birth of my son, but the fact that he has been labelled ‘autistic’ is certainly the reason that I’m writing about autism here. I have written elsewhere (Ryan and Runswick-Cole 2008) about the struggles some mothers of disabled children face as non-disabled mother-researchers, occupying a liminal space, neither disabled researchers nor ‘proper’ mothers. Mothers of disabled children find

liminal space, neither disabled researchers nor ‘proper’ mothers. Mothers of disabled children find themselves in a troubling space; they have often been vilified by the disabled people’s movement as oppressors of their disabled children while simultaneously being pathologised by the professions as ‘grief stricken’ or ‘in denial’ in ‘coming to terms with’ having a child who is marked as deviant or disordered (Ryan and Runswick-Cole 2008). As mother-researcher, I face a dilemma: how much should

disordered (Ryan and Runswick-Cole 2008). As mother-researcher, I face a dilemma: how much should I reveal about either my status as a mother or about the (private) life of my child? I know that being the mother of a disabled child has influenced the way I carry out research, not least the way in which I make relationships with other parents of disabled children and, indeed, with disabled children and young people. Yet, I’ve been cautious in talking and, even more so, writing about my status as

and young people. Yet, I’ve been cautious in talking and, even more so, writing about my status as mother-researcher. This is partly for fear that my research won’t be taken ‘seriously’ in (often male-dominated) academia or that, even in the context of qualitative research that pays attention to the ‘positionality’ of the researcher, my work will be dismissed as ‘biased’ and ‘partisan’. As a mother writing about a child labelled with autism, I follow in numerous others’ footsteps. Well-known

writing about a child labelled with autism, I follow in numerous others’ footsteps. Well-known examples include Jacqui Jackson (2004) and Charlotte Moore (2004) who have both published popular memoirs documenting the lives of children labelled with autism. More recently there has been an explosion of ‘mommy blogs’ (Morrison 2011). Mommy bloggers document their domestic lives in detail, including information about their children, and share this online. In the United States, popular bloggers make

about their children, and share this online. In the United States, popular bloggers make money by placing products in their blogs and receiving payment from sponsors. In the United Kingdom, there are a number of ‘mommy blogs’ where parents of disabled children talk about their lives. Recently, the ethics of blogging about family life have also been the focus of some academic interest. Yet, Archer and Pettigrew’s (2011) study, based in Australia, found that about 70 per cent of the ‘mommy

Archer and Pettigrew’s (2011) study, based in Australia, found that about 70 per cent of the ‘mommy bloggers’ thought there were ‘no ethical issues’ in blogging about family life (as long as they were not paid by sponsors to write the blog).

In contrast to the response of the Australian ‘mommy bloggers’, it seems to me that there are several ethical issues for mothers in talking about their children in the public domain. First, there is the question of consent. Is it possible for a mother to gain consent from their own child given the power imbalances implicit in the relationship? How can mothers maintain their children’s anonymity while at the same time claiming authorship of the blog, book or chapter? How can I protect my

while at the same time claiming authorship of the blog, book or chapter? How can I protect my child’s confidentiality, while at the same time talking about autism?

At first, I thought it might be possible to resolve this dilemma by arguing that my son, although labelled with autism, is not this thing called autism. Yet, it has proved impossible for me to talk about autism without reference, at times, to what people have said to or about my son or indeed what he has said himself. So I approach writing this chapter carefully and cautiously with the belief that the ethical risks to my son and to other people labelled with autism are greater if I stay

that the ethical risks to my son and to other people labelled with autism are greater if I stay silent. I acknowledge that others may not agree with this decision.

You may have noticed that in the discussion above I referred only to mothers of children labelled with autism. Fathers are often the absent presence in accounts of family life and, indeed, as the story-tellers, and so it is in my own account. This absence is not, perhaps, surprising given that it is the mother–child dyad that is the focus of attention in global North psychology and psychiatry. As Nadesan (2005) reveals in her account of the social construction of autism, the history of autism

Nadesan (2005) reveals in her account of the social construction of autism, the history of autism is inextricably entangled with a history of mothering. Nadesan’s exploration of the conditions in which it became possible for autism to be produced is as much an exploration of the socio-cultural production of mothering as it is of autism. Even in the twenty-first century, the ghost of Bettelheim’s (1972) ‘refrigerator mothers’ continues to haunt the lives of mothers of children labelled with

(1972) ‘refrigerator mothers’ continues to haunt the lives of mothers of children labelled with autism.

THE JOURNEY BEGINS Like most people in the UK in the late twentieth century, I imagine, I had a vague knowledge of what autism was before I became a mother, three weeks earlier than expected, on a cold winter day in the late nineties. I’d seen the film Rain Man (1988). Autism was tragic, frightening, to be avoided, someone else’s world, someone else’s problem. In the 1990s, I was an early years teacher in the south of England and a child came into the reception (entry) class at the school

teacher in the south of England and a child came into the reception (entry) class at the school where I worked who was ‘autistic’. This was the first time that this had happened at a school I had worked in. The child’s parents were very keen for him to be included in mainstream school; the head teacher was too, the staff was less welcoming. As I was pregnant, a colleague suggested I should stay away from the child at playtime: ‘He is volatile… He might kick you… He might hurt the baby.’ I took

from the child at playtime: ‘He is volatile… He might kick you… He might hurt the baby.’ I took her advice. Shortly afterwards, we had our baby son – perfect, ten tiny fingers, ten tiny toes…and soon to be labelled autistic. In the first few months and years of his life, autism remained someone else’s concern and someone else’s problem – although the labels ‘bottom shuffler’, ‘very late walker’, then ‘developmental delay’ and ‘dyspraxia’ should have sounded the alarm that all was not ‘as it

then ‘developmental delay’ and ‘dyspraxia’ should have sounded the alarm that all was not ‘as it should be’. But I had yet to be enculturated into the world of autism; I didn’t know the ‘signs’. I didn’t know that I should have been looking for the ‘red flags’ of the disorder (McGuire 2011). I hadn’t picked up on the subtle, and not so subtle, hints from professionals anxious about hitting me with the ‘autism’ word. So it fell to an educational psychologist to ask, when my son started school:

the ‘autism’ word. So it fell to an educational psychologist to ask, when my son started school: ‘Have you heard the word “autism” before?’ Of course I had: I’d seen Rain Man, I’d seen (from a safe distance) the autistic child in the playground and I was in the middle of a psychology degree, I’d read the chapter on autism. How could autism be in any way relevant to my world? It wasn’t until a year later that the diagnosis was confirmed. A clinical psychologist visited me at home (while my

a year later that the diagnosis was confirmed. A clinical psychologist visited me at home (while my husband was at work) to tell me that my son did, indeed, have ‘Asperger Syndrome’ (interestingly that diagnosis changed over time and he has since been labelled with autism). I remember asking, urgently, ‘Will he live independently?’ The clinical psychologist replied that four out of five children diagnosed at this age [five] would not. I don’t remember any help being offered; I remember nothing

diagnosed at this age [five] would not. I don’t remember any help being offered; I remember nothing more than a gloomy prognosis. I was sure it couldn’t be right. Grief-stricken and in denial, as psychologists would have doubtless have described me (Lazarus and Folkman 1994), I wasn’t yet prepared to give up my son to the diagnosis of autism.

BECOMING AN AUTISM EXPERT But the word was there now, troubling me, and I was curious. So, like many other parents of children given a diagnosis of autism, I read and I read. Tony Attwood (2007), an expert in Asperger Syndrome, was, I discovered, essential reading. Claire Sainsbury (2009) and Luke Jackson (2002), two people who identify as autistic, gave the ‘insider’ perspective. Jacqui Jackson (2004) and Charlotte Moore (2004) gave the mother’s point of view. Carol Stock Kranowitz (2005)

(2004) and Charlotte Moore (2004) gave the mother’s point of view. Carol Stock Kranowitz (2005) taught me about sensory integration difficulties. And, slowly but surely, I learned about autism and its cultures. Eventually, I was referred to a support group for parents of ‘autistic children’, which I was keen to attend. But I remember being asked by another mother, in the waiting room before the first meeting, ‘How bad is he?’ I hesitated, I didn’t know how to answer the question, and so she

first meeting, ‘How bad is he?’ I hesitated, I didn’t know how to answer the question, and so she clarified, ‘Does he speak?’ ‘Is he toilet-trained?’ ‘Is he violent?’ ‘Are your other children autistic?’ Despite my initial reticence, through my reading and my interactions with other mothers, I was seduced by the autism culture. I began to speak the language of autism too and to recognise behaviours such as ‘stimming’ and ‘meltdowns’ that I had previously thought (naively?) were arm-flapping and

such as ‘stimming’ and ‘meltdowns’ that I had previously thought (naively?) were arm-flapping and being cross. I learnt the stories of the culture, I knew about the triad of impairments (impaired social and emotional relationships, impaired language and communication skills, and restricted imagination), lack of Theory of Mind, weak central coherence and the details of the Sally–Anne test (Baron-Cohen, Leslie and Frith 1985; McGuire and Michalko 2009). I began to look for autistic pathology in

Leslie and Frith 1985; McGuire and Michalko 2009). I began to look for autistic pathology in family members to spot it in my husband and in myself. I learnt about the great figures in history and contemporary culture who were ‘autistic’ – Einstein, Bill Gates, Sherlock Holmes (Frith 2003). And yet, I could never quite absorb the autism canon completely; I didn’t take the speech therapist’s advice to make him ‘look at me’.

AUTISM IS NOT THE PROBLEM And then, through a friend, who also had a disabled daughter, I heard about the social model of disability and a love affair began! The social model sees disability as something imposed upon people with impairments; it is the result of social arrangements that oppress people with impairments (Oliver 1990). Social oppression theories of disability recognise disability not as an individual, medical problem but as the product of a disabling society that ‘is geared to,

not as an individual, medical problem but as the product of a disabling society that ‘is geared to, built for and by, and controlled by non-disabled people’ (Swain, French and Cameron 2003, p.2). The social model of disability has been hugely influential in the fight for equality for disabled people; it is a powerful ‘heuristic’ device or thinking tool (Oliver 1990) that has enabled disabled people and their allies to expose and challenge the discrimination they sadly continue to face. So I

and their allies to expose and challenge the discrimination they sadly continue to face. So I learned that what I had understood was wrong. Autism was not the problem; it was the systems, attitudes, and environments that disable people with autism that should be the focus of my concern. The social model gave me a tool, a hammer, with which to rain down blows against the disabling practices we as a family continue to be subjected to. A social model discourse underpins much of the current

we as a family continue to be subjected to. A social model discourse underpins much of the current advocacy work I do for my son; I hold that hammer very tightly.

DIFFERENCE, NOT DISORDER? A little while later, another mother of a disabled child suggested I visit a website and there I discovered the neurodiversity movement. The neurodiversity movement fights for the rights of ‘autistics’ arguing that autism is a naturally occurring brain difference, not a disorder (Runswick-Cole 2014). The Institute for the Study of Neurotypicals (ISNT) (non-autistic people) playfully reverses the pathology to construct ‘neurotypical’ people as having deficits and being

playfully reverses the pathology to construct ‘neurotypical’ people as having deficits and being in lack because of their neurotypicality, as the offer of an ‘Online Screening Test’ for neurotypicality illustrates.1

This approach attracted me because it celebrates autistic difference. I could affirm my son’s identity as autistic, rather than deny it or try to correct it. My flirtation with the neurodiversity movement was brief. Neurodiversity is seductive – it offers affirmation and a political identity that allows people to celebrate their sense of self (Runswick-Cole 2014). But it, and indeed the social model of disability, does little to trouble this thing called autism. Neurodiversity relies on the

model of disability, does little to trouble this thing called autism. Neurodiversity relies on the discourses of medical pathology. Neurodiverse advocacy is premised on a claim that people with autism have differently wired brains and that this difference, while not disordered, is real and biologically based (Runswick-Cole 2014). The stories of the medical world remain pervasive and powerful, they are the dominant meta-narratives in our contemporary culture, but they are just that – stories.

are the dominant meta-narratives in our contemporary culture, but they are just that – stories. Both social model theory and the neurodiversity movement fail to trouble the construction of autism as a coherent, biomedical category, a diagnosable condition, a reality, or brute fact. And that for me is where their limitations lie.

BUT AUTISM STOLE MY CHILD… Autism as ‘brute fact’ is widely viewed as a ‘bad thing’. McGuire (2011) has powerfully critiqued the war that groups like Autism Speaks in the United States have launched on autism. Mothers talk about wrestling their child back from autism’s pervasive grip and of saving their child and making him (it usually is him) normal. Celebrity mothers (note mothers, not fathers), such as Jenny McCarthy in the United States, or Sally Bercow in the UK, lead the charge. It is

such as Jenny McCarthy in the United States, or Sally Bercow in the UK, lead the charge. It is the mothers’ duty to free their sons from the autism that is holding them hostage – the biological deficit, the disorder that must be exposed, treated and vanquished. So, given that I am arguing that the category of autism is of limited use to those diagnosed with it, you may be surprised to hear that, like other ‘autism moms’, I also believe autism stole my child. But my son has not been taken by the

other ‘autism moms’, I also believe autism stole my child. But my son has not been taken by the autism, the biological disorder; I do not believe that he is locked within an autistic world, out of reach and alone. Rather I argue the thing called autism that has stolen my child is a contemporary cultural construct, a story. This autism story tells of an all-encompassing label, a narrative lens that accounts for every aspect of my son’s behaviour and personality, so much so that there is nothing

accounts for every aspect of my son’s behaviour and personality, so much so that there is nothing left of him that cannot be accounted for without reference to the autism story. It is this autism that has stolen my child.

Autism is, we are told: *   the reason why our son liked Thomas the Tank Engine *   why he now likes Star Wars *   why he made up words as a young child *   why he likes to play chess. When I rang up to view a post-sixteen education provision for him, I was asked: *   What is his diagnosis? *   Does he have challenging behaviour? Not one question about what he likes/what he doesn’t, what interests him, what I admire about him, nor even how he communicates – because autism has, I believe, stolen

him, what I admire about him, nor even how he communicates – because autism has, I believe, stolen away the spaces for those questions to be asked.

Just for a moment, let’s consider the following: *   He likes Thomas the Tank Engine because I do – Percy was always my favourite engine. I read those books and I passed them onto him.

*   He likes Star Wars because his sister does – they watch it together. *   He just likes making up new words; young children do. *   He likes playing chess because his dad does too. But even in my attempt to rescue my son from autism’s grip, it may be that for some readers I simply confirm the ripples of autism in the family – my partner, daughter and I clearly have autistic traits too, as evidenced by our love of Thomas the Tank Engine, Star Wars and chess. This thing called autism has such

by our love of Thomas the Tank Engine, Star Wars and chess. This thing called autism has such a grip on my child and my family that attempts to steal him back simply become evidence of my pathology.

COMMODIFYING AUTISM This thing called autism is everywhere; it is embedded in contemporary culture – popular magazines, newspapers, books, films, academic journal articles, and conferences that both describe and produce autism (Mallett and Runswick-Cole 2012; see also Chapter 6). The processes of neoliberal marketisation have spread the story from global North to South (Hyun Uk 2012). The number of children labelled with autism across the globe continues to rise as debates rage about whether

of children labelled with autism across the globe continues to rise as debates rage about whether better diagnosis or an increase in prevalence is to blame. Autism has, excuse the inappropriateness of the phrase, gone ‘viral’. For example, recently on Facebook, there was a trend for friends to fill in an online test for autism (the Autism Quotient) and then post their scores on the newsfeed – diagnosing autism is the new app. Clearly, there is money to be made in autism through therapies,

– diagnosing autism is the new app. Clearly, there is money to be made in autism through therapies, treatments, specialist programmes, research into cause and amelioration, training courses for professionals and parents and people labelled with autism (see also Chapter 6). In speaking, and writing about autism I contribute to that industry and I have been criticised for doing so from a position of privilege as a white, middle-class, ‘non-autistic’ university-employed mother of a disabled child.

privilege as a white, middle-class, ‘non-autistic’ university-employed mother of a disabled child. While I accept that I occupy a position of privilege, I also recognise that it is not possible to comment on the autism industry without contributing to it. Nor does a position of privilege mean that I can easily dismantle the autism industry; I cannot wish it away. Any attempts to do so face a tidal wave of resistance from powerful vested interests in the form of big business, large charities,

wave of resistance from powerful vested interests in the form of big business, large charities, people who have invested in a label that they believe brings resources, understanding and relief from stigma and blame. I understand and accept that many people, including people labelled with autism and family members, have a great sense of community and indeed relief as the result of diagnosis. So let me try to achieve something a little smaller than total abolition of the category. Let me try to

me try to achieve something a little smaller than total abolition of the category. Let me try to reframe autism as one of the stories people tell about my son and other people labelled with autism, not the only, or crucially, the most important story (Goodley and Runswick-Cole 2012).

WHAT DOES THIS MEAN FOR PEOPLE LABELLED WITH AUTISM? I am arguing that the contemporary cultural autism story told about people with the label drowns out all the other stories that could be told about them. Crucially, despite the (often broken) promise of access to services the autism label seems to offer, having the label of autism is a risky business. There are numerous examples of ‘therapeutic violence’ (Timimi et al. 2010) against people labelled with autism – a school in the United States

violence’ (Timimi et al. 2010) against people labelled with autism – a school in the United States is still using electric shock-based behavioural therapy. Sometimes, having the label of autism or not is literally a matter of life or death: for example, through my work as a researcher within disability studies, I met a child whose paediatrician refused to take seriously the health implications of his very restricted diet because this was a result of his ‘autism’ and so nothing could be done.

of his very restricted diet because this was a result of his ‘autism’ and so nothing could be done. Recently, I met another family whose son was refused surgery that would have given him back his mobility because the child’s autism meant he ‘wouldn’t understand what was going on’.

WHEN AUTISM IS NOT THE STORY So, for me, autism is a story but it is not the story. Now it is the story I might have to trot out for medical assessments. I sometimes secretly play a game with professionals when they first meet our family – it is called ‘See how far you can get without mentioning the “A” word.’ And the answer is that you can get a long way. At a recent transition assessment with a Learning Disability nurse, I answered all her questions without reference to a diagnosis. We got

a Learning Disability nurse, I answered all her questions without reference to a diagnosis. We got to the end of the conversation and the nurse looked at her notes and said, ‘Ah, yes, I’ve got the diagnosis here: autism.’ After a detailed and lengthy discussion about my son, I wonder what that word added to the conversation. Following my encounter with the Learning Disability nurse, I wonder, is it possible to imagine services differently? How about a service that labels people, but only with

it possible to imagine services differently? How about a service that labels people, but only with their names (see also Chapter 10); where practitioners ask questions of and about a person, not a disorder; and where they offer solutions based on the person’s hopes, dreams and aspirations, rather than intervening to ‘correct’ perceived symptoms and deficits.

BUT WHAT DOES MY SON THINK? I wrote at the beginning about the ethical complexities of speaking about the label that my son has been given while being mindful of protecting his right to privacy and confidentiality. I have often been asked when I’ve spoken publicly in this way about autism: ‘This is all very well, what you’ve told us, but what are your son’s feelings about the label?’ I take this question seriously but I answer it cautiously in quoting my son directly:

Henry2 was out with his PA, Andrew, in Morrison’s Café [a supermarket] having a cola and his favourite chocolate lumpy bumpy cake. Andrew’s friend Graham arrived. Graham identifies with the label of Asperger Syndrome. After chatting for a while, Graham asked Andrew, ‘Is Henry autistic?’ Andrew (rightly) replied that he couldn’t give that kind of information about Henry to a stranger, but suggested that Graham could ask Henry himself. So Graham asked Henry, ‘Are you autistic?’ Henry replied,

that Graham could ask Henry himself. So Graham asked Henry, ‘Are you autistic?’ Henry replied, ‘What’s that?’ ‘Well,’ said Graham, ‘Do you find it difficult to communicate with people?’ Henry: ‘No.’ ‘Do you find things difficult to understand?’ Henry: ‘No.’ ‘Do you find it difficult to imagine things?’ Henry: ‘No.’

CONCLUSION I end this chapter with another story from my own experience: I came back from the bar at the Burns’ night ceilidh [Scottish country dancing to celebrate the Scottish poet Rabbie Burns], glass in hand and in high spirits after ‘Stripping the Willow’ [a dance] with my husband and son. A woman approached me and, with no preamble, said, ‘Is your son autistic?’ I felt my face tighten and I stumbled a little as I said, ‘Henry’s just Henry.’ She looked uncomfortable and countered, ‘I’m

I stumbled a little as I said, ‘Henry’s just Henry.’ She looked uncomfortable and countered, ‘I’m not being offensive, it’s just my son’s child minder has a son who is autistic, and your son sounds just like him.’ I muttered, half-heartedly, ‘My son doesn’t need a label to define him,’ and wandered off, spirits dampened, back to my son and husband.

What can we make of this encounter? The woman in the story was keen to demonstrate that she knew the signs of autism; perhaps she had heard a monotone in Henry’s voice? Perhaps she had detected some evidence of ‘stimming’ in his dancing? And yet, in some way, I felt that she was reaching out to me, telling me that she too knew this thing called autism; she imagined, perhaps, that we had a shared understanding? Perhaps she was offering me pity for being the mother of a ‘disordered’ child. I have

Perhaps she was offering me pity for being the mother of a ‘disordered’ child. I have since wondered how she expected me to reply, what was the answer she waiting for? ‘Yes, he is autistic,’ followed by more information about the signs of the disorder, perhaps, a description of how ‘bad’ he is, and how ‘hard’ my life is, but also how we, as a family, ‘overcome’. It is also worth noting that she approached me and not Henry’s father – it is me, never his father, who must account for our son’s

approached me and not Henry’s father – it is me, never his father, who must account for our son’s being. And, crucially, she did not approach my son, but perhaps this was because she didn’t really see him. She saw symptoms and signs, deficit and disorder, where I saw a joyful young man, dancing with his parents and friends. My son is invisible to her, hidden by this thing called autism. By buying into the autism story, she is missing so much of him; perhaps I should pity her?

We are all caught up in this thing called autism – a powerful story but a story that can and must be challenged.

1 See http://isnt.autistics.org/ntscreening.html. 2 All names have been changed.  CHAPTER 2 WHAT HAVE WE LEARNED FROM THE SCIENCE OF AUTISM? Sami Timimi and Brian McCabe  INTRODUCTION Autism is currently thought of as a lifelong neurodevelopmental disorder (a problem with the development of the nervous system). The percentage of people thought to have this neurodevelopmental problem has increased from about 4 in 10,000 in the 1960s to approaching 1 in 50 now, a 50-fold rise in just four

from about 4 in 10,000 in the 1960s to approaching 1 in 50 now, a 50-fold rise in just four decades. In this chapter we outline how this change in thinking about the nature of autism came about through largely ideological changes and then present the key findings from genetic, brain imaging, diagnostic, treatment and outcome studies. Highlighting the lack of evidence supporting such a radical change in conceptualisation and practice, we ask the reader to consider the political context that may

in conceptualisation and practice, we ask the reader to consider the political context that may have contributed to the rise in popularity of the diagnosis and to reflect on the social, personal and ethical consequences of making a diagnosis.

A CRISIS IN DIAGNOSIS The status of diagnosis in psychiatry is in trouble. Marcia Angell, former editor of the New England Journal of Medicine, launched a blistering attack on the orientation and practice of modern psychiatry in a series of book reviews (Angell 2011a, 2011b). The development of the Diagnostic and Statistical Manual fifth edition (DSM-5; American Psychiatric Association 2013) has been severely criticised by the chair of the fourth edition taskforce (DSM-IV, American Psychiatric

been severely criticised by the chair of the fourth edition taskforce (DSM-IV, American Psychiatric Association 1994) as being over-inclusive and lacking a proper scientific basis, citing ‘autistic disorder’ as one of three ‘false epidemics’ created by DSM-IV (Frances 2010); arguing that DSM-IV criteria caused an ‘epidemic’ by massive over-diagnosis of autism. For many years there has been a campaign to abolish use of the diagnosis of schizophrenia (Hilpern 2007). The status and relevance of

to abolish use of the diagnosis of schizophrenia (Hilpern 2007). The status and relevance of diagnosis to modern mental health care is thus being actively debated (Timimi 2013). If schizophrenia is the ‘sacred cow’ of diagnosis for adult psychiatry, then autism is child psychiatry’s equivalent – one that, until recently, was assumed to be unquestionably valid. With regard to Autistic Spectrum Disorder (ASD), UK guidelines (from the National Institute for Health and Care Excellence – NICE)

Disorder (ASD), UK guidelines (from the National Institute for Health and Care Excellence – NICE) encourage earlier recognition, which is likely to lead to more people with this diagnosis (Baird, Douglas and Murphy 2011), whilst new DSM-5 criteria propose to simplify the diagnostic construct and eliminate some subcategories that are under the autistic spectrum rubric such as ‘Asperger’s’ (Szatmari 2011), leading to a lively debate about the validity and utility of such changes (Volkmar and

2011), leading to a lively debate about the validity and utility of such changes (Volkmar and Happé 2012). However, neither DSM-5 nor NICE guidelines consider the possibility that, like schizophrenia and other formal psychiatric categories, the diagnosis of autism and its spectrum is neither scientifically meaningful nor clinically useful. If the construct of autism does not correspond with naturally occurring boundaries in some meaningful manner (e.g. biologically or cognitively), then it is

occurring boundaries in some meaningful manner (e.g. biologically or cognitively), then it is unlikely to be useful for building scientific knowledge or for constructing rational clinical interventions. We argue that we have been researching autism for long enough and with little enough return for us to conclude that autism may not be a useful construct and future debates should not be limited to arguments about where its boundaries lie.

A BRIEF HISTORY In 1911, psychiatrist Eugene Bleuler first used the term ‘autistic’ to denote the state of mind of psychotic individuals who were socially withdrawn (Bleuler 1911). ‘Autism’ and ‘autistic’ stem from the Greek word ‘autos’, meaning self. Thus the term autism originally referred to a basic disturbance found in schizophrenia (another term introduced by Bleuler) characterised by an extreme withdrawal of oneself from the fabric of social life, and so autism first entered medical

extreme withdrawal of oneself from the fabric of social life, and so autism first entered medical terminology as a description for a particular mental state rather than an enduring set of personality traits. Autism as a diagnostic construct was proposed by Leo Kanner in 1943 to describe a group of 11 children who were emotionally and intellectually impaired and showing an extreme ‘aloneness’ from early life (Kanner 1943). By 1955 Kanner had reported a total of 120 cases of what he described as

early life (Kanner 1943). By 1955 Kanner had reported a total of 120 cases of what he described as ‘infantile autism’. He differentiated this condition from childhood schizophrenia as he felt autism was evident almost from birth. Kanner, writing with Eisenberg (1956), hypothesised about aetiology, and concluded that it was unhelpful to try and tie aetiology to solely biological or environmental causes, stating:

There is little likelihood that a single etiologic is solely responsible for the pathology of the behavior. Arguments that counter pose ‘hereditary’ versus ‘environmental’ as antithetical terms are fundamentally in error. Operationally, they are interpenetrating concepts. The effects of chromosomal aberrations can be mimicked in the phenotype by environmental pathogens, and genetic factors require for their complete manifestation suitable environmental conditions. (Kanner and Eisenberg 1956,

for their complete manifestation suitable environmental conditions. (Kanner and Eisenberg 1956, p.563)

By the 1960s, Kanner’s diagnosis of ‘infantile autism’ had become a recognised diagnosis for what was considered as a rare disorder primarily found in children with moderate to severe intellectual impairments. The first epidemiological study was published in 1966 and arrived at a prevalence figure for autism of 4.5 per 10,000 (Lotter 1966). The year after Kanner first proposed ‘autism’ as a diagnosis, Hans Asperger published a paper, largely ignored at the time, in which he described children

Hans Asperger published a paper, largely ignored at the time, in which he described children with no easily recognisable intellectual impairment, but with social communication problems (Asperger 1944). In the 1970s, psychiatrist Lorna Wing saw a similarity in some people she was seeing and those described by Asperger. Dr Wing’s ideas intersected with another psychiatrist, Michael Rutter, and formed the basis for the expansion of the concept of autism into Autistic Spectrum Disorders.

Revisiting the seminal papers by Wing and Rutter reveals the extent to which this expansion of the concept of autism was not the result of any new scientific discoveries, but rather new ideologies. For example, in her paper proposing the ‘Asperger Syndrome’ diagnosis, Wing (1981) describes six case histories with little in common with Asperger’s classic four cases beyond sharing a lack of social reciprocity. Four of Wing’s cases were adults, whereas all of Asperger’s were children; two had

reciprocity. Four of Wing’s cases were adults, whereas all of Asperger’s were children; two had some degree of learning disability, whereas none of Asperger’s did; most of Wing’s cases spoke late whereas most of Asperger’s spoke early; most of Wing’s cases were described as having little capacity for analytical thought whereas Asperger’s cases were described as highly analytical; and none of Wing’s cases were described as manipulative, mendacious, cheeky, confrontational or vindictive (terms

cases were described as manipulative, mendacious, cheeky, confrontational or vindictive (terms Asperger used about his cases). Furthermore, it is not clear why a lack of social reciprocity should warrant a diagnosis, or if it did, why it might not include most who have some degree of general intellectual disability or mental health problems. In addition to supporting the hypothesis that autism is genetic and that these genes act on an ‘autism spectrum’, Sir Michael Rutter also provided early

is genetic and that these genes act on an ‘autism spectrum’, Sir Michael Rutter also provided early support for Wing and Gould’s (1979) proposal that autism is characterised by a ‘triad’ of symptoms. Rutter (1978) reinforced the now familiar ‘triad’ by defining autism as being: (1) impaired social development which has a number of special characteristics out of keeping with the child’s intellectual level; (2) delayed and deviant language development that is also out of keeping with the child’s

level; (2) delayed and deviant language development that is also out of keeping with the child’s intellectual level; and (3) ‘insistence on sameness’ as shown by stereotyped play patterns, abnormal preoccupations or resistance to change. Since then, Rutter has consistently argued that autism and its spectrum is, beyond reasonable doubt, genetic in origin. Referring to autism spectrum disorders he states:

The estimate of heritability is something of the order of 90 percent. Because the twin and family studies provide the same conclusions, there can be considerable confidence that the heritability is very high with genetic factors accounting for the majority of the population variance in liability to develop the disorder. (Rutter 2006, p.68)

This quite deterministic approach to autism contrasts with Kanner and Eisenberg’s (above) and with other more general statements that Rutter makes about the accuracy and utility of estimating genetic contributions:

It is of little value to attempt to quantify the relative influence of the two [genes and environment] in any precise way, because it will vary by population and over time. Moreover, the precise estimates for the strength of genetic and of environmental influences have few policy or practice implications. (Rutter 2006, p.221)

By the 1980s much research was underway to try to find the biological cause of autism. This necessitated that psychiatrists and psychologists develop new theoretical concepts to give researchers a practical way forward for their investigations. Thus it was proposed that a lack of Theory of Mind (ToM) was the central deficit found in autism. ToM refers to the ability to understand that other people have their own plans, thoughts, beliefs, attitudes and emotions. It was suggested that there was

have their own plans, thoughts, beliefs, attitudes and emotions. It was suggested that there was an underlying cognitive structure responsible for ToM, which was viewed as an innate ‘module’ that is activated at around three years of age. The ToM Module (ToMM) was seen as dedicated, specific, fast, automatic, at least partly encapsulated, and its functioning as being largely independent of the general intellectual capacities of the individual (Baron-Cohen 1995). Autistic children were found to

intellectual capacities of the individual (Baron-Cohen 1995). Autistic children were found to have a significantly lower performance on certain tasks said to measure ToM compared with other cognitive tasks for testing intelligence and language capacities, leading to the hypothesis that autism was the consequence of a specific (biological) deficit in the ToMM. However, by the late 1990s, interest in ToM was waning. As the diagnosis of autism was increasing, no genes responsible for the ToMM had

in ToM was waning. As the diagnosis of autism was increasing, no genes responsible for the ToMM had been found, inconsistencies in ToM findings were apparent, the diagnosis was being made mainly in males, and interest in behavioural and biological continuums was increasing (Timimi, Gardner and McCabe 2010). Moving away from the idea that autism is caused by a discrete pathology, Professor Simon Baron-Cohen put forward the ‘extreme male brain’ theory of autism. His new theory was the first to

Baron-Cohen put forward the ‘extreme male brain’ theory of autism. His new theory was the first to properly recognise that a theory of causation must be able to explain the gender disparity (with the majority receiving a diagnosis being male) and so he concluded that people with autism simply match an extreme of the male profile, with a particularly intense drive to systemise and a low drive to empathise. In other words, autistic traits are biologically male, normally distributed, found as a

empathise. In other words, autistic traits are biologically male, normally distributed, found as a continuum in the population, and autism is simply the extreme end of this (male) continuum (Baron-Cohen 2003). A deficit in ToMM and the extreme male brain are two high-profile theories put forward in recent years in an attempt to explain the assumed biological basis of ASD. However, they are just two of multiple theories with plenty of others such as dysfunctional immune systems, abnormalities in

of multiple theories with plenty of others such as dysfunctional immune systems, abnormalities in certain brain structures, problems in neurological connectivity, problems in early neuronal cell migration, effects of vaccines, and so on, to choose from. The presence of multiple, as yet unconfirmed, theories reflects the lack of progress in identifying the biological basis of autism. Despite this, the concept of ASD has proved highly popular and it seems the more attention it has received the

the concept of ASD has proved highly popular and it seems the more attention it has received the wider its boundaries have become as it has now expanded into a condition said to potentially affect 160 per 10,000 (1.6%) of the population (Baron-Cohen et al. 2009), an over 3500 per cent increase in prevalence in just four decades. Failure to find any specific treatment, growing concern about an autism ‘epidemic’, and media coverage of the alleged link with vaccines have all contributed to the

autism ‘epidemic’, and media coverage of the alleged link with vaccines have all contributed to the high public profile of the diagnosis.

THE SCIENCE Evidence to support the claim that autism is a ‘neurodevelopmental disorder’ comes mainly from genetic and neuroimaging studies.

Genetic studies The argument that autism is a strongly genetic condition rests primarily upon twin and family studies (see below). Most of these studies focus on what might be called ‘core’ autism rather than broader ASD diagnoses such as Asperger Syndrome (Freitag 2007). In addition, there are no adoption studies (studies comparing the biological families with the adopted families of adoptees adopted early in life and who are subsequently diagnosed with autism), with the one study that

adopted early in life and who are subsequently diagnosed with autism), with the one study that included subjects who had been adopted (Szatmari et al. 2000) being a familial aggregate study comparing what the authors called the ‘lesser variant’ of Pervasive Developmental Disorders (PDD) (i.e. traits that do not amount to a full diagnosis) amongst the relatives of adopted children with a diagnosis of a PDD compared with the relatives of non-adopted children with a PDD diagnosis, and thus it is

of a PDD compared with the relatives of non-adopted children with a PDD diagnosis, and thus it is not a true adoption study. Methodological problems are numerous in the twin studies, including: selection bias; establishing zygosity; generalising results from twins to non-twins; the sex ratio in autism twin studies (of similar numbers of female and male twins); and, most importantly, heritability estimates relying on an assumption that the environments Mono-Zygotic (MZ/identical) and Di-Zygotic

estimates relying on an assumption that the environments Mono-Zygotic (MZ/identical) and Di-Zygotic (DZ/non-identical) twins experience are the same (Joseph 2006). To conclude that a concordance rate difference between sets of MZ and DZ twins (with MZ twins who share all their genes having higher rates of both getting the diagnosis than DZ twins who share on average half their genes) is the result of genetics only, one must first assume that both sets of twins experience similar psychosocial

of genetics only, one must first assume that both sets of twins experience similar psychosocial environments – the equal environment assumption (EEA). If MZ twins are treated more similarly than DZ twins then any, or all, of the difference in concordance rates could also be explained by non-genetic factors. It is well established that MZ twins are treated more similarly and experience more similar environments than do DZ twins or singletons (Joseph 2006). In addition, being an identical twin

environments than do DZ twins or singletons (Joseph 2006). In addition, being an identical twin produces its own psychological dynamic with identity confusion and swapping roles occurring more commonly. Therefore the assumption that the higher incidences of ASDs found in MZ twins can only be attributable to genetics is not sustained. Some researchers have reacted by trying to stand the criticism on its head, through suggesting that genetic factors lead twins to ‘choose’ their more identical

on its head, through suggesting that genetic factors lead twins to ‘choose’ their more identical environments. With such an argument (that genes are responsible for disrupting the EEA, therefore the difference in rates between MZ and DZ twins is still genetic) it is difficult to see how evidence could settle this without clear pathways being identified from specific genes to specific behaviours.

Notwithstanding these methodological issues, the findings from twin studies do not appear to provide particularly strong evidence that, after taking intellectual disability into account, much heritability for autism on its own is left. For example, in their classic study Folstein and Rutter (1977) studied 21 same-sexed twin pairs (11 MZ and 10 DZ) in which at least one twin was diagnosed with autism. There was a 36 per cent concordance rate for autism in MZ twins (i.e. 4 out of the 11 twin

autism. There was a 36 per cent concordance rate for autism in MZ twins (i.e. 4 out of the 11 twin pairs) compared with 0 per cent in DZ twins. In addition, 9 out of the 11 MZ twin pairs (including all the autism diagnosed pairs) were concordant for ‘cognitive deficits’, whereas only one of the DZ twins were. In other words ‘cognitive deficits’ was much more likely to be found as a concordant factor in MZ twins than autism – and separating generalised intellectual disability from autism per se

in MZ twins than autism – and separating generalised intellectual disability from autism per se continues to bedevil the autism research literature. In family studies it is even more difficult to separate environmental from genetic influences as children ‘inherit’ their family’s environment as well as genes. Despite this, it remains rare in the studies to come across the presence of a relative who has enough symptoms to warrant a diagnosis of an ASD (Timimi et al. 2010). In addition, confounds

has enough symptoms to warrant a diagnosis of an ASD (Timimi et al. 2010). In addition, confounds such as learning difficulties and cognitive impairments are often found to be just as strongly associated in families of those with an ASD diagnosis (Starr et al. 2001). The lack of clear evidence that autism is genetic is reflected in the lack of any genes for autism being discovered in molecular genetic studies. Thus various candidate genes, linkage studies, genome scans, and chromosome studies

studies. Thus various candidate genes, linkage studies, genome scans, and chromosome studies have failed to produce and reliably replicate any particular genes for autism. The more failures that pile up, the more ‘complex’ autism genetics must be according to advocates, whilst the most likely explanation for this finding – that there is no such thing as genes that ‘cause’ autism – remains unmentionable. The continuing failure to identify specifics seems to have resulted in the majority of the

The continuing failure to identify specifics seems to have resulted in the majority of the human chromosome being identified as potentially harbouring autism genes (Tsai 2004). Others have come to the more honest (and predictable) conclusion that:

Though numerous linkages and associations have been identified, they tend to diminish upon closer examination or attempted replication. (Wassink et al. 2004, p.272)

No major genome scan has produced significant and reproducible results… no candidate gene from a genome scan has shown a reproducible and statistically significant association with autism…no candidate gene that has inspired multiple studies has shown a robust and reproducible connection to autism. (Blaxill 2005, cited in Joseph 2006, pp.251–252)

More recent studies have focused on the number and density of Copy Number Variants (CNVs – these are bits of genetic code that are either missing where they should be or replicated where they shouldn’t be). These studies have come to similar conclusions, with CNV patterns being predictive of intellectual impairments but not ASD specifically (Crespi and Croft 2012; Gallagher and Merikangas 2012). Reviews of the genetic research published in Nature in articles written by some of the leading

Reviews of the genetic research published in Nature in articles written by some of the leading academics in this area concluded:

Many research teams have searched for genes that may be involved. They haven’t turned up any prime candidates yet, only dozens, maybe hundreds of bit players. (Hughes 2012, p.S2)
Genome wide association studies have failed to turn up any parts of the genome with statistical significance. (Williams 2012, p.S5)

Now that we have faster and cheaper technology for whole-genome scanning, the fact that despite thousands of these scans being completed we cannot find evidence beyond a tiny non-significant proportion of the assumed total genetic risk and with these small genetic associations being heterogeneous, crossing psychiatric diagnostic boundaries and more strongly related to learning difficulties than a diagnosis of ASD per se, should lead researchers to be less optimistic about finding ASD-specific

a diagnosis of ASD per se, should lead researchers to be less optimistic about finding ASD-specific genes. Researchers ought to be concluding that until proven otherwise we must assume there are no autism genes, rather than the current state of affairs where the assumption is that there are but we just can’t find them yet. The high ratio of males to females in ASD diagnoses also poses a problem. Genetic mechanisms need to account for this, such as autism being transmitted through the X

Genetic mechanisms need to account for this, such as autism being transmitted through the X chromosome, and thus far molecular genetic studies have failed to find an X- or Y-link. Some researchers have suggested that for disorders such as autism a ‘bottom-up’ rather than ‘top-down’ approach to molecular genetics is needed, where small contributions are additive. This approach seems to also cast doubt on the validity of a unitary concept of autism, recognising that these small genetic

cast doubt on the validity of a unitary concept of autism, recognising that these small genetic associations are heterogeneous and cross psychiatric diagnostic boundaries rather than being specific to any one (Verhoeven, Tuinier and Van Der Burgt 2008). A variety of studies also find higher rates of autism symptoms amongst psychologically or socially vulnerable groups, such as severely neglected children in some Romanian orphanages who have been described as having ‘quasi-autism’ (Rutter et al.

in some Romanian orphanages who have been described as having ‘quasi-autism’ (Rutter et al. 1999). However, as they meet the descriptive criteria for a diagnosis, there is no ‘quasi’ about it.

Neuroimaging An important consideration to take into account in any analysis of neuroimaging profiles is that of ‘neuroplasticity’. This refers to the remarkable ability of the nervous system (particularly in children) to grow and change in response to environmental stimuli. The remarkable plasticity of the human brain makes it difficult to determine precise cause and effect when individuals with differential life experiences subsequently show what appear to be differences in neurological

with differential life experiences subsequently show what appear to be differences in neurological structure or functioning. For example, Sadato and colleagues (1996) reported activation of the primary visual cortex by Braille reading, when studying participants who became blind early in life. Using positron emission tomography to assess activation in blind and sighted participants during tactile discrimination tasks, they discovered that blind subjects showed activation of primary and

tactile discrimination tasks, they discovered that blind subjects showed activation of primary and secondary visual cortex areas during these tasks, while sighted controls showed deactivation. What these and other similar studies suggest is a profound ability of the brain to remap its own contours, based on differential life experience. While these findings have opened new avenues of investigation for neuroscience, they make efforts to link neurological differences with behavioural disorders

for neuroscience, they make efforts to link neurological differences with behavioural disorders more difficult. When a group of individuals with what is categorised as aberrant behaviour are found to have statistically significant different patterns of brain functioning from normal controls, we must ask ourselves if the neurological discrepancies are a cause or an effect of the behavioural differences. This inconvenience makes it difficult for researchers to ‘pin down’ behavioural aberrations

This inconvenience makes it difficult for researchers to ‘pin down’ behavioural aberrations into neurologically valid and clinically meaningful categories. Thus, neuroanatomical and functional differences could be the result of environmental factors affecting brain development (like psychological trauma), differential maturation rates and variations resulting from heterogeneity in the sample (for example the effects of confounds such as intellectual ability).

The biggest problem for autism studies, however, comes from the lack of consistently replicated findings. For example, studies focusing on the cerebellum have documented an increase in cerebellar volume among children diagnosed with an ASD, while others have found smaller than average cerebellar volumes; yet others have reported no significant differences (Timimi et al. 2010). Similarly, studies on the amygdala have found wide inconsistencies, including some studies that found significant

on the amygdala have found wide inconsistencies, including some studies that found significant differences in volume and others that found no differences (Anagnostou and Taylor 2011; Dziobek et al. 2006). Similar inconsistencies have been found in cortical thickness with differences often becoming insignificant once intellectual ability level was controlled for (Hardan et al. 2006, 2009). In reviewing these discrepancies, sample heterogeneity (such differences reflecting differences in

In reviewing these discrepancies, sample heterogeneity (such differences reflecting differences in cognitive ability rather than ASD) is regularly cited as a problem (Nadesan 2005). Every now and then a new ‘brain scan’ study on autism announcing a breakthrough hits the headlines. In each case the claim has proven to be misplaced, but keeps the illusion that ‘we are close to understanding the biological basis of autism’ going. For example, in 2011 a study (Lai et al. 2011) that claimed it

biological basis of autism’ going. For example, in 2011 a study (Lai et al. 2011) that claimed it correctly predicted an autism diagnosis in 36 out of 39 children based on their functional magnetic resonance imaging proved to be over-optimistic. Critical review of this study concluded that all the authors had done was use technology to identify an area related to language problems and not something that can be used for differential diagnosis (Lange 2012). Thus, from whatever angle you come at

that can be used for differential diagnosis (Lange 2012). Thus, from whatever angle you come at autism, we are no further forward to discovering the biological basis of autism than when Kanner first articulated the concept. It is likely that this is because autism and ASD do not describe a coherent biological construct.

TREATMENTS, PROGNOSIS AND THE PROBLEM OF HETEROGENEITY Consistent with other major reviews (National Autistic Society 2003) we could find no evidence of methodologically sound and replicated research that demonstrates that particular interventions (whether educational, psychological, social or physical) specifically and differentially help those who have any form of autism (Timimi et al. 2010). Until specific treatments for ASD (as opposed to treatment approaches that work equally well with

Until specific treatments for ASD (as opposed to treatment approaches that work equally well with other individuals of similar ability levels) are adequately demonstrated through replicated controlled trials, we cannot and should not assume that the diagnosis has clinical value. With regard to prognosis, the same behaviourally defined syndrome (ASD) is applied to residents of institutions with little hope of living independently and has been suggested for men who have achieved greatness, such

hope of living independently and has been suggested for men who have achieved greatness, such as Mozart, Van Gogh, Edison, Darwin – all of whom, along with many others, have been retrospectively diagnosed as having an ASD (Fitzgerald 2004, 2005). From an ‘impairment’ perspective, this is virtually the entire human spectrum, suggesting that ASD, as it is currently defined, is too heterogeneous to have prognostic value. Not surprisingly therefore, more recent prospective studies have shown

to have prognostic value. Not surprisingly therefore, more recent prospective studies have shown remarkably diverse outcomes, with many who have been diagnosed with an ASD in childhood reportedly having few or no symptoms by adulthood (Szatmari 2011) and many of those diagnosed in adulthood having high levels of psychosocial functioning (Hofvander et al. 2009). This heterogeneity in what is now considered as ‘autism’ or ‘autistic’ is particularly problematic. Not only do the ‘core’ features

considered as ‘autism’ or ‘autistic’ is particularly problematic. Not only do the ‘core’ features such as difficulties in social communication have a large cross-over with people who would not consider themselves as having a ‘disorder’, but autism as a mental state (referring back to Bleuler’s original use of the term autism to denote a state of social withdrawal) and elements of autism symptoms as traits are common in a variety of mental health diagnoses from ADHD to depression and anxiety to

as traits are common in a variety of mental health diagnoses from ADHD to depression and anxiety to psychosis (see Table 2.1).

| Trait                                                                 | Overlapping psyychiatric and other presentations

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|-------------------------------------------------------|-------------------------------------------------|

| Lack of eye contact                                       | Depression, anxiety, social anxiety disorder, shyness, low self-esteem and a lack of self-confidence. The same person may exhibit widely different degrees of reciprocal eye-contact in different social situations. Many cultures have practices that prohibit or limit eye contact (for example, in hierarchies such as between children and adults). |

| Poor ‘reading’ of non-verbal communication               | Language disorders, ADHD, anxiety, depression, personality disorder, attachment disorders, bipolar affective disorder, psychosis, intellectual disability. As with most behavioural traits its importance is always relative to what you’re comparing it to. Other overlaps include side-effect of medications, disinterest, a sense of alienation, and normal variation. Apparent poor reading of non-verbal communication could also be the result

and normal variation. Apparent poor reading of non-verbal communication could also be the result of deliberate provocation, boredom, a strong desire for attention, love and so on. |

| Stereotyped and restricted patterns of interest (restricted imagination) | OCD, obsessional personality disorder, schizoid personality disorder, ADHD (such as with computer games), depression (morbid preoccupation with negative aspects), eating disorders (fixation with food and/or weight). Most men (e.g. with football!). Sportsmen and women. Humanity: obsessive interest in a restricted sphere is characteristic not only of a depressed state of mind, but also of a phase of discovery and

is characteristic not only of a depressed state of mind, but also of a phase of discovery and exploration. If someone had not fixated long enough on the tendency of logs to roll down slopes, the wheel may never have been invented! Most high achievers/perfectionists ‘fixate’ on their area of interest/expertise. |

| Failure to develop peer relationships appropriate to developmental level | ADHD, language disorders, intellectual disability, attachment disorder, personality disorders, conduct disorders, social anxiety and other anxiety disorders. This is an important reason why many parents, teachers or social workers may seek to have children under their care diagnosed in the first place – a failure to fit in. Failure to fit in can have many more ordinary associations such as clumsiness (particularly in

in. Failure to fit in can have many more ordinary associations such as clumsiness (particularly in boys), different interests to peers, unhappy home circumstances, and other traumas that preoccupy the young person. |

| A lack of empathy                                         | Depression, conduct disorder, psychosis, ADHD, personality disorders, attachment disorder. A lack of self-confidence in social situations and a preoccupation with one’s own problems tends to reduce interest in other people’s lives and interests. The extent to which one can feign interest in all subjects or empathise with all predicaments is limited. As expectations for social empathy (e.g. in school and in the workplace) increase, so

is limited. As expectations for social empathy (e.g. in school and in the workplace) increase, so more may appear to lack this capacity. For isolated immigrants, a lack of familiarity with cultural expectations may also be a factor. Poor achievement or a sense of inferiority in a competitive culture may also lead people to turn away from a range of common interests. |

| Hyper-sensitivities and/or hypo-sensitivities               | Depression, anxiety disorders, ADHD, personality disorders, attachment disorder. There is a range of ‘sensitivities’ amongst the population. Some hate loud noises; others crave them. These change from situation to situation, with cultural etiquette, familiarity, age and so on. |

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CHAPTER 1 UNDERSTANDING THIS THING CALLED AUTISM Katherine Runswick-Cole  INTRODUCTION It seems popular these days to ‘go on a journey’. In the UK, television schedules are awash with reality shows where competitors take to the dance floor, or to the ice rink, or even to the jungle, to construct a ‘journey narrative’ in their efforts to win the show. Here, I want to sketch out a different kind of journey – with no prize to win, apart from, perhaps, a shift in understanding. I’m going to talk

of journey – with no prize to win, apart from, perhaps, a shift in understanding. I’m going to talk about my journey with autism. This is, I suppose, a theoretical journey, a journey that begins with assumptions of autism’s pathology, tragedy, deficit and lack but then moves through a rejection of medicalised and tragic discourses of impairment, to a continuing love affair with the social model of disability (Goodley 2011) through a brief flirtation with the neurodiversity movement (Ortega

of disability (Goodley 2011) through a brief flirtation with the neurodiversity movement (Ortega 2009) and finally, and controversially perhaps, to my current view that autism is a contemporary cultural phenomenon so that labelling people with it is no longer helpful (Goodley and Runswick-Cole 2012; Mallett and Runswick-Cole 2012; Timimi, Gardner and McCabe 2010).

THEORETICAL JOURNEY Theoretical journeys are sometimes seen as controversial in my academic disciplinary home (disability studies), particularly in a context of economic austerity where there is a strong contemporary urge by some within academia to get back to either the material ‘basics’ of disablism (Barnes 2003) or to recognise the ‘devastating reality’ of impairment (Shakespeare 2006). And yet, it is my personal and professional relationship with what I describe as this thing called

And yet, it is my personal and professional relationship with what I describe as this thing called ‘autism’ (Mallett and Runswick-Cole 2012) that drives the writing of this theoretical journey, not simply a love of theory for theory’s sake, but a desire to harness theory for its disruptive and transformative potential in people’s lives (Goodley and Runswick-Cole 2014). My relationship with autism is framed by my position both as a mother of a child labelled with autism and as a university

is framed by my position both as a mother of a child labelled with autism and as a university researcher in the field of critical disability studies in the UK.

ETHICS I begin my journey, however, with a dilemma. As I describe below, my journey with autism pre-dates the birth of my son, but the fact that he has been labelled ‘autistic’ is certainly the reason that I’m writing about autism here. I have written elsewhere (Ryan and Runswick-Cole 2008) about the struggles some mothers of disabled children face as non-disabled mother-researchers, occupying a liminal space, neither disabled researchers nor ‘proper’ mothers. Mothers of disabled children find

liminal space, neither disabled researchers nor ‘proper’ mothers. Mothers of disabled children find themselves in a troubling space; they have often been vilified by the disabled people’s movement as oppressors of their disabled children while simultaneously being pathologised by the professions as ‘grief stricken’ or ‘in denial’ in ‘coming to terms with’ having a child who is marked as deviant or disordered (Ryan and Runswick-Cole 2008). As mother-researcher, I face a dilemma: how much should

disordered (Ryan and Runswick-Cole 2008). As mother-researcher, I face a dilemma: how much should I reveal about either my status as a mother or about the (private) life of my child? I know that being the mother of a disabled child has influenced the way I carry out research, not least the way in which I make relationships with other parents of disabled children and, indeed, with disabled children and young people. Yet, I’ve been cautious in talking and, even more so, writing about my status as

and young people. Yet, I’ve been cautious in talking and, even more so, writing about my status as mother-researcher. This is partly for fear that my research won’t be taken ‘seriously’ in (often male-dominated) academia or that, even in the context of qualitative research that pays attention to the ‘positionality’ of the researcher, my work will be dismissed as ‘biased’ and ‘partisan’. As a mother writing about a child labelled with autism, I follow in numerous others’ footsteps. Well-known

writing about a child labelled with autism, I follow in numerous others’ footsteps. Well-known examples include Jacqui Jackson (2004) and Charlotte Moore (2004) who have both published popular memoirs documenting the lives of children labelled with autism. More recently there has been an explosion of ‘mommy blogs’ (Morrison 2011). Mommy bloggers document their domestic lives in detail, including information about their children, and share this online. In the United States, popular bloggers make

about their children, and share this online. In the United States, popular bloggers make money by placing products in their blogs and receiving payment from sponsors. In the United Kingdom, there are a number of ‘mommy blogs’ where parents of disabled children talk about their lives. Recently, the ethics of blogging about family life have also been the focus of some academic interest. Yet, Archer and Pettigrew’s (2011) study, based in Australia, found that about 70 per cent of the ‘mommy

Archer and Pettigrew’s (2011) study, based in Australia, found that about 70 per cent of the ‘mommy bloggers’ thought there were ‘no ethical issues’ in blogging about family life (as long as they were not paid by sponsors to write the blog).

In contrast to the response of the Australian ‘mommy bloggers’, it seems to me that there are several ethical issues for mothers in talking about their children in the public domain. First, there is the question of consent. Is it possible for a mother to gain consent from their own child given the power imbalances implicit in the relationship? How can mothers maintain their children’s anonymity while at the same time claiming authorship of the blog, book or chapter? How can I protect my

while at the same time claiming authorship of the blog, book or chapter? How can I protect my child’s confidentiality, while at the same time talking about autism?

At first, I thought it might be possible to resolve this dilemma by arguing that my son, although labelled with autism, is not this thing called autism. Yet, it has proved impossible for me to talk about autism without reference, at times, to what people have said to or about my son or indeed what he has said himself. So I approach writing this chapter carefully and cautiously with the belief that the ethical risks to my son and to other people labelled with autism are greater if I stay

that the ethical risks to my son and to other people labelled with autism are greater if I stay silent. I acknowledge that others may not agree with this decision.

You may have noticed that in the discussion above I referred only to mothers of children labelled with autism. Fathers are often the absent presence in accounts of family life and, indeed, as the story-tellers, and so it is in my own account. This absence is not, perhaps, surprising given that it is the mother–child dyad that is the focus of attention in global North psychology and psychiatry. As Nadesan (2005) reveals in her account of the social construction of autism, the history of autism

Nadesan (2005) reveals in her account of the social construction of autism, the history of autism is inextricably entangled with a history of mothering. Nadesan’s exploration of the conditions in which it became possible for autism to be produced is as much an exploration of the socio-cultural production of mothering as it is of autism. Even in the twenty-first century, the ghost of Bettelheim’s (1972) ‘refrigerator mothers’ continues to haunt the lives of mothers of children labelled with

(1972) ‘refrigerator mothers’ continues to haunt the lives of mothers of children labelled with autism.

THE JOURNEY BEGINS Like most people in the UK in the late twentieth century, I imagine, I had a vague knowledge of what autism was before I became a mother, three weeks earlier than expected, on a cold winter day in the late nineties. I’d seen the film Rain Man (1988). Autism was tragic, frightening, to be avoided, someone else’s world, someone else’s problem. In the 1990s, I was an early years teacher in the south of England and a child came into the reception (entry) class at the school

teacher in the south of England and a child came into the reception (entry) class at the school where I worked who was ‘autistic’. This was the first time that this had happened at a school I had worked in. The child’s parents were very keen for him to be included in mainstream school; the head teacher was too, the staff was less welcoming. As I was pregnant, a colleague suggested I should stay away from the child at playtime: ‘He is volatile… He might kick you… He might hurt the baby.’ I took

from the child at playtime: ‘He is volatile… He might kick you… He might hurt the baby.’ I took her advice. Shortly afterwards, we had our baby son – perfect, ten tiny fingers, ten tiny toes…and soon to be labelled autistic. In the first few months and years of his life, autism remained someone else’s concern and someone else’s problem – although the labels ‘bottom shuffler’, ‘very late walker’, then ‘developmental delay’ and ‘dyspraxia’ should have sounded the alarm that all was not ‘as it

then ‘developmental delay’ and ‘dyspraxia’ should have sounded the alarm that all was not ‘as it should be’. But I had yet to be enculturated into the world of autism; I didn’t know the ‘signs’. I didn’t know that I should have been looking for the ‘red flags’ of the disorder (McGuire 2011). I hadn’t picked up on the subtle, and not so subtle, hints from professionals anxious about hitting me with the ‘autism’ word. So it fell to an educational psychologist to ask, when my son started school:

the ‘autism’ word. So it fell to an educational psychologist to ask, when my son started school: ‘Have you heard the word “autism” before?’ Of course I had: I’d seen Rain Man, I’d seen (from a safe distance) the autistic child in the playground and I was in the middle of a psychology degree, I’d read the chapter on autism. How could autism be in any way relevant to my world? It wasn’t until a year later that the diagnosis was confirmed. A clinical psychologist visited me at home (while my

a year later that the diagnosis was confirmed. A clinical psychologist visited me at home (while my husband was at work) to tell me that my son did, indeed, have ‘Asperger Syndrome’ (interestingly that diagnosis changed over time and he has since been labelled with autism). I remember asking, urgently, ‘Will he live independently?’ The clinical psychologist replied that four out of five children diagnosed at this age [five] would not. I don’t remember any help being offered; I remember nothing

diagnosed at this age [five] would not. I don’t remember any help being offered; I remember nothing more than a gloomy prognosis. I was sure it couldn’t be right. Grief-stricken and in denial, as psychologists would have doubtless have described me (Lazarus and Folkman 1994), I wasn’t yet prepared to give up my son to the diagnosis of autism.

BECOMING AN AUTISM EXPERT But the word was there now, troubling me, and I was curious. So, like many other parents of children given a diagnosis of autism, I read and I read. Tony Attwood (2007), an expert in Asperger Syndrome, was, I discovered, essential reading. Claire Sainsbury (2009) and Luke Jackson (2002), two people who identify as autistic, gave the ‘insider’ perspective. Jacqui Jackson (2004) and Charlotte Moore (2004) gave the mother’s point of view. Carol Stock Kranowitz (2005)

(2004) and Charlotte Moore (2004) gave the mother’s point of view. Carol Stock Kranowitz (2005) taught me about sensory integration difficulties. And, slowly but surely, I learned about autism and its cultures. Eventually, I was referred to a support group for parents of ‘autistic children’, which I was keen to attend. But I remember being asked by another mother, in the waiting room before the first meeting, ‘How bad is he?’ I hesitated, I didn’t know how to answer the question, and so she

first meeting, ‘How bad is he?’ I hesitated, I didn’t know how to answer the question, and so she clarified, ‘Does he speak?’ ‘Is he toilet-trained?’ ‘Is he violent?’ ‘Are your other children autistic?’ Despite my initial reticence, through my reading and my interactions with other mothers, I was seduced by the autism culture. I began to speak the language of autism too and to recognise behaviours such as ‘stimming’ and ‘meltdowns’ that I had previously thought (naively?) were arm-flapping and

such as ‘stimming’ and ‘meltdowns’ that I had previously thought (naively?) were arm-flapping and being cross. I learnt the stories of the culture, I knew about the triad of impairments (impaired social and emotional relationships, impaired language and communication skills, and restricted imagination), lack of Theory of Mind, weak central coherence and the details of the Sally–Anne test (Baron-Cohen, Leslie and Frith 1985; McGuire and Michalko 2009). I began to look for autistic pathology in

Leslie and Frith 1985; McGuire and Michalko 2009). I began to look for autistic pathology in family members to spot it in my husband and in myself. I learnt about the great figures in history and contemporary culture who were ‘autistic’ – Einstein, Bill Gates, Sherlock Holmes (Frith 2003). And yet, I could never quite absorb the autism canon completely; I didn’t take the speech therapist’s

advice to make him ‘look at me’.  AUTISM IS NOT THE PROBLEM And then, through a friend, who also had a disabled daughter, I heard about the social model of disability and a love affair began! The social model sees disability as something imposed upon people with impairments; it is the result of social arrangements that oppress people with impairments (Oliver 1990). Social oppression theories of disability recognise disability not as an individual, medical problem but as the product of a

of disability recognise disability not as an individual, medical problem but as the product of a disabling society that ‘is geared to, built for and by, and controlled by non-disabled people’ (Swain, French and Cameron 2003, p.2). The social model of disability has been hugely influential in the fight for equality for disabled people; it is a powerful ‘heuristic’ device or thinking tool (Oliver 1990) that has enabled disabled people and their allies to expose and challenge the discrimination

1990) that has enabled disabled people and their allies to expose and challenge the discrimination they sadly continue to face. So I learned that what I had understood was wrong. Autism was not the problem; it was the systems, attitudes, and environments that disable people with autism that should be the focus of my concern. The social model gave me a tool, a hammer, with which to rain down blows against the disabling practices we as a family continue to be subjected to. A social model

blows against the disabling practices we as a family continue to be subjected to. A social model discourse underpins much of the current advocacy work I do for my son; I hold that hammer very tightly.

DIFFERENCE, NOT DISORDER? A little while later, another mother of a disabled child suggested I visit a website and there I discovered the neurodiversity movement. The neurodiversity movement fights for the rights of ‘autistics’ arguing that autism is a naturally occurring brain difference, not a disorder (Runswick-Cole 2014). The Institute for the Study of Neurotypicals (ISNT) (non-autistic people) playfully reverses the pathology to construct ‘neurotypical’ people as having deficits and being

playfully reverses the pathology to construct ‘neurotypical’ people as having deficits and being in lack because of their neurotypicality, as the offer of an ‘Online Screening Test’ for neurotypicality illustrates.1

This approach attracted me because it celebrates autistic difference. I could affirm my son’s identity as autistic, rather than deny it or try to correct it. My flirtation with the neurodiversity movement was brief. Neurodiversity is seductive – it offers affirmation and a political identity that allows people to celebrate their sense of self (Runswick-Cole 2014). But it, and indeed the social model of disability, does little to trouble this thing called autism. Neurodiversity relies on the

model of disability, does little to trouble this thing called autism. Neurodiversity relies on the discourses of medical pathology. Neurodiverse advocacy is premised on a claim that people with autism have differently wired brains and that this difference, while not disordered, is real and biologically based (Runswick-Cole 2014). The stories of the medical world remain pervasive and powerful, they are the dominant meta-narratives in our contemporary culture, but they are just that – stories.

are the dominant meta-narratives in our contemporary culture, but they are just that – stories. Both social model theory and the neurodiversity movement fail to trouble the construction of autism as a coherent, biomedical category, a diagnosable condition, a reality, or brute fact. And that for me is where their limitations lie.

BUT AUTISM STOLE MY CHILD… Autism as ‘brute fact’ is widely viewed as a ‘bad thing’. McGuire (2011) has powerfully critiqued the war that groups like Autism Speaks in the United States have launched on autism. Mothers talk about wrestling their child back from autism’s pervasive grip and of saving their child and making him (it usually is him) normal. Celebrity mothers (note mothers, not fathers), such as Jenny McCarthy in the United States, or Sally Bercow in the UK, lead the charge. It is

such as Jenny McCarthy in the United States, or Sally Bercow in the UK, lead the charge. It is the mothers’ duty to free their sons from the autism that is holding them hostage – the biological deficit, the disorder that must be exposed, treated and vanquished. So, given that I am arguing that the category of autism is of limited use to those diagnosed with it, you may be surprised to hear that, like other ‘autism moms’, I also believe autism stole my child. But my son has not been taken by the

other ‘autism moms’, I also believe autism stole my child. But my son has not been taken by the autism, the biological disorder; I do not believe that he is locked within an autistic world, out of reach and alone. Rather I argue the thing called autism that has stolen my child is a contemporary cultural construct, a story. This autism story tells of an all-encompassing label, a narrative lens that accounts for every aspect of my son’s behaviour and personality, so much so that there is nothing

accounts for every aspect of my son’s behaviour and personality, so much so that there is nothing left of him that cannot be accounted for without reference to the autism story. It is this autism that has stolen my child.

Autism is, we are told: *   the reason why our son liked Thomas the Tank Engine *   why he now likes Star Wars *   why he made up words as a young child *   why he likes to play chess. When I rang up to view a post-sixteen education provision for him, I was asked: *   What is his diagnosis? *   Does he have challenging behaviour? Not one question about what he likes/what he doesn’t, what interests him, what I admire about him, nor even how he communicates – because autism has, I believe, stolen

him, what I admire about him, nor even how he communicates – because autism has, I believe, stolen away the spaces for those questions to be asked.

Just for a moment, let’s consider the following: *   He likes Thomas the Tank Engine because I do – Percy was always my favourite engine. I read those books and I passed them onto him.

*   He likes Star Wars because his sister does – they watch it together. *   He just likes making up new words; young children do. *   He likes playing chess because his dad does too. But even in my attempt to rescue my son from autism’s grip, it may be that for some readers I simply confirm the ripples of autism in the family – my partner, daughter and I clearly have autistic traits too, as evidenced by our love of Thomas the Tank Engine, Star Wars and chess. This thing called autism has such

by our love of Thomas the Tank Engine, Star Wars and chess. This thing called autism has such a grip on my child and my family that attempts to steal him back simply become evidence of my pathology.

COMMODIFYING AUTISM This thing called autism is everywhere; it is embedded in contemporary culture – popular magazines, newspapers, books, films, academic journal articles, and conferences that both describe and produce autism (Mallett and Runswick-Cole 2012; see also Chapter 6). The processes of neoliberal marketisation have spread the story from global North to South (Hyun Uk 2012). The number of children labelled with autism across the globe continues to rise as debates rage about whether

of children labelled with autism across the globe continues to rise as debates rage about whether better diagnosis or an increase in prevalence is to blame. Autism has, excuse the inappropriateness of the phrase, gone ‘viral’. For example, recently on Facebook, there was a trend for friends to fill in an online test for autism (the Autism Quotient) and then post their scores on the newsfeed – diagnosing autism is the new app. Clearly, there is money to be made in autism through therapies,

– diagnosing autism is the new app. Clearly, there is money to be made in autism through therapies, treatments, specialist programmes, research into cause and amelioration, training courses for professionals and parents and people labelled with autism (see also Chapter 6). In speaking, and writing about autism I contribute to that industry and I have been criticised for doing so from a position of privilege as a white, middle-class, ‘non-autistic’ university-employed mother of a disabled child.

privilege as a white, middle-class, ‘non-autistic’ university-employed mother of a disabled child. While I accept that I occupy a position of privilege, I also recognise that it is not possible to comment on the autism industry without contributing to it. Nor does a position of privilege mean that I can easily dismantle the autism industry; I cannot wish it away. Any attempts to do so face a tidal wave of resistance from powerful vested interests in the form of big business, large charities,

wave of resistance from powerful vested interests in the form of big business, large charities, people who have invested in a label that they believe brings resources, understanding and relief from stigma and blame. I understand and accept that many people, including people labelled with autism and family members, have a great sense of community and indeed relief as the result of diagnosis. So let me try to achieve something a little smaller than total abolition of the category. Let me try to

me try to achieve something a little smaller than total abolition of the category. Let me try to reframe autism as one of the stories people tell about my son and other people labelled with autism, not the only, or crucially, the most important story (Goodley and Runswick-Cole 2012).

WHAT DOES THIS MEAN FOR PEOPLE LABELLED WITH AUTISM? I am arguing that the contemporary cultural autism story told about people with the label drowns out all the other stories that could be told about them. Crucially, despite the (often broken) promise of access to services the autism label seems to offer, having the label of autism is a risky business. There are numerous examples of ‘therapeutic violence’ (Timimi et al. 2010) against people labelled with autism – a school in the United States

violence’ (Timimi et al. 2010) against people labelled with autism – a school in the United States is still using electric shock-based behavioural therapy. Sometimes, having the label of autism or not is literally a matter of life or death: for example, through my work as a researcher within disability studies, I met a child whose paediatrician refused to take seriously the health implications of his very restricted diet because this was a result of his ‘autism’ and so nothing could be done.

of his very restricted diet because this was a result of his ‘autism’ and so nothing could be done. Recently, I met another family whose son was refused surgery that would have given him back his mobility because the child’s autism meant he ‘wouldn’t understand what was going on’.

WHEN AUTISM IS NOT THE STORY So, for me, autism is a story but it is not the story. Now it is the story I might have to trot out for medical assessments. I sometimes secretly play a game with professionals when they first meet our family – it is called ‘See how far you can get without mentioning the “A” word.’ And the answer is that you can get a long way. At a recent transition assessment with a Learning Disability nurse, I answered all her questions without reference to a diagnosis. We got

a Learning Disability nurse, I answered all her questions without reference to a diagnosis. We got to the end of the conversation and the nurse looked at her notes and said, ‘Ah, yes, I’ve got the diagnosis here: autism.’ After a detailed and lengthy discussion about my son, I wonder what that word added to the conversation. Following my encounter with the Learning Disability nurse, I wonder, is it possible to imagine services differently? How about a service that labels people, but only with

it possible to imagine services differently? How about a service that labels people, but only with their names (see also Chapter 10); where practitioners ask questions of and about a person, not a disorder; and where they offer solutions based on the person’s hopes, dreams and aspirations, rather than intervening to ‘correct’ perceived symptoms and deficits.

BUT WHAT DOES MY SON THINK? I wrote at the beginning about the ethical complexities of speaking about the label that my son has been given while being mindful of protecting his right to privacy and confidentiality. I have often been asked when I’ve spoken publicly in this way about autism: ‘This is all very well, what you’ve told us, but what are your son’s feelings about the label?’ I take this question seriously but I answer it cautiously in quoting my son directly:

Henry2 was out with his PA, Andrew, in Morrison’s Café [a supermarket] having a cola and his favourite chocolate lumpy bumpy cake. Andrew’s friend Graham arrived. Graham identifies with the label of Asperger Syndrome. After chatting for a while, Graham asked Andrew, ‘Is Henry autistic?’ Andrew (rightly) replied that he couldn’t give that kind of information about Henry to a stranger, but suggested that Graham could ask Henry himself. So Graham asked Henry, ‘Are you autistic?’ Henry replied,

that Graham could ask Henry himself. So Graham asked Henry, ‘Are you autistic?’ Henry replied, ‘What’s that?’ ‘Well,’ said Graham, ‘Do you find it difficult to communicate with people?’ Henry: ‘No.’ ‘Do you find things difficult to understand?’ Henry: ‘No.’ ‘Do you find it difficult to imagine things?’ Henry: ‘No.’

CONCLUSION I end this chapter with another story from my own experience: I came back from the bar at the Burns’ night ceilidh [Scottish country dancing to celebrate the Scottish poet Rabbie Burns], glass in hand and in high spirits after ‘Stripping the Willow’ [a dance] with my husband and son. A woman approached me and, with no preamble, said, ‘Is your son autistic?’ I felt my face tighten and I stumbled a little as I said, ‘Henry’s just Henry.’ She looked uncomfortable and countered, ‘I’m

I stumbled a little as I said, ‘Henry’s just Henry.’ She looked uncomfortable and countered, ‘I’m not being offensive, it’s just my son’s child minder has a son who is autistic, and your son sounds just like him.’ I muttered, half-heartedly, ‘My son doesn’t need a label to define him,’ and wandered off, spirits dampened, back to my son and husband.

What can we make of this encounter? The woman in the story was keen to demonstrate that she knew the signs of autism; perhaps she had heard a monotone in Henry’s voice? Perhaps she had detected some evidence of ‘stimming’ in his dancing? And yet, in some way, I felt that she was reaching out to me, telling me that she too knew this thing called autism; she imagined, perhaps, that we had a shared understanding? Perhaps she was offering me pity for being the mother of a ‘disordered’ child. I have

Perhaps she was offering me pity for being the mother of a ‘disordered’ child. I have since wondered how she expected me to reply, what was the answer she waiting for? ‘Yes, he is autistic,’ followed by more information about the signs of the disorder, perhaps, a description of how ‘bad’ he is, and how ‘hard’ my life is, but also how we, as a family, ‘overcome’. It is also worth noting that she approached me and not Henry’s father – it is me, never his father, who must account for our son’s

approached me and not Henry’s father – it is me, never his father, who must account for our son’s being. And, crucially, she did not approach my son, but perhaps this was because she didn’t really see him. She saw symptoms and signs, deficit and disorder, where I saw a joyful young man, dancing with his parents and friends. My son is invisible to her, hidden by this thing called autism. By buying into the autism story, she is missing so much of him; perhaps I should pity her?

We are all caught up in this thing called autism – a powerful story but a story that can and must be challenged.

1 See http://isnt.autistics.org/ntscreening.html. 2 All names have been changed.  CHAPTER 2 WHAT HAVE WE LEARNED FROM THE SCIENCE OF AUTISM? Sami Timimi and Brian McCabe  INTRODUCTION Autism is currently thought of as a lifelong neurodevelopmental disorder (a problem with the development of the nervous system). The percentage of people thought to have this neurodevelopmental problem has increased from about 4 in 10,000 in the 1960s to approaching 1 in 50 now, a 50-fold rise in just four

from about 4 in 10,000 in the 1960s to approaching 1 in 50 now, a 50-fold rise in just four decades. In this chapter we outline how this change in thinking about the nature of autism came about through largely ideological changes and then present the key findings from genetic, brain imaging, diagnostic, treatment and outcome studies. Highlighting the lack of evidence supporting such a radical change in conceptualisation and practice, we ask the reader to consider the political context that may

in conceptualisation and practice, we ask the reader to consider the political context that may have contributed to the rise in popularity of the diagnosis and to reflect on the social, personal and ethical consequences of making a diagnosis.

A CRISIS IN DIAGNOSIS The status of diagnosis in psychiatry is in trouble. Marcia Angell, former editor of the New England Journal of Medicine, launched a blistering attack on the orientation and practice of modern psychiatry in a series of book reviews (Angell 2011a, 2011b). The development of the Diagnostic and Statistical Manual fifth edition (DSM-5; American Psychiatric Association 2013) has been severely criticised by the chair of the fourth edition taskforce (DSM-IV, American Psychiatric

been severely criticised by the chair of the fourth edition taskforce (DSM-IV, American Psychiatric Association 1994) as being over-inclusive and lacking a proper scientific basis, citing ‘autistic disorder’ as one of three ‘false epidemics’ created by DSM-IV (Frances 2010); arguing that DSM-IV criteria caused an ‘epidemic’ by massive over-diagnosis of autism. For many years there has been a campaign to abolish use of the diagnosis of schizophrenia (Hilpern 2007). The status and relevance of

to abolish use of the diagnosis of schizophrenia (Hilpern 2007). The status and relevance of diagnosis to modern mental health care is thus being actively debated (Timimi 2013). If schizophrenia is the ‘sacred cow’ of diagnosis for adult psychiatry, then autism is child psychiatry’s equivalent – one that, until recently, was assumed to be unquestionably valid. With regard to Autistic Spectrum Disorder (ASD), UK guidelines (from the National Institute for Health and Care Excellence – NICE)

Disorder (ASD), UK guidelines (from the National Institute for Health and Care Excellence – NICE) encourage earlier recognition, which is likely to lead to more people with this diagnosis (Baird, Douglas and Murphy 2011), whilst new DSM-5 criteria propose to simplify the diagnostic construct and eliminate some subcategories that are under the autistic spectrum rubric such as ‘Asperger’s’ (Szatmari 2011), leading to a lively debate about the validity and utility of such changes (Volkmar and

2011), leading to a lively debate about the validity and utility of such changes (Volkmar and Happé 2012). However, neither DSM-5 nor NICE guidelines consider the possibility that, like schizophrenia and other formal psychiatric categories, the diagnosis of autism and its spectrum is neither scientifically meaningful nor clinically useful. If the construct of autism does not correspond with naturally occurring boundaries in some meaningful manner (e.g. biologically or cognitively), then it is

occurring boundaries in some meaningful manner (e.g. biologically or cognitively), then it is unlikely to be useful for building scientific knowledge or for constructing rational clinical interventions. We argue that we have been researching autism for long enough and with little enough return for us to conclude that autism may not be a useful construct and future debates should not be limited to arguments about where its boundaries lie.

A BRIEF HISTORY In 1911, psychiatrist Eugene Bleuler first used the term ‘autistic’ to denote the state of mind of psychotic individuals who were socially withdrawn (Bleuler 1911). ‘Autism’ and ‘autistic’ stem from the Greek word ‘autos’, meaning self. Thus the term autism originally referred to a basic disturbance found in schizophrenia (another term introduced by Bleuler) characterised by an extreme withdrawal of oneself from the fabric of social life, and so autism first entered medical

extreme withdrawal of oneself from the fabric of social life, and so autism first entered medical terminology as a description for a particular mental state rather than an enduring set of personality traits. Autism as a diagnostic construct was proposed by Leo Kanner in 1943 to describe a group of 11 children who were emotionally and intellectually impaired and showing an extreme ‘aloneness’ from early life (Kanner 1943). By 1955 Kanner had reported a total of 120 cases of what he described as

early life (Kanner 1943). By 1955 Kanner had reported a total of 120 cases of what he described as ‘infantile autism’. He differentiated this condition from childhood schizophrenia as he felt autism was evident almost from birth. Kanner, writing with Eisenberg (1956), hypothesised about aetiology, and concluded that it was unhelpful to try and tie aetiology to solely biological or environmental causes, stating:

There is little likelihood that a single etiologic is solely responsible for the pathology of the behavior. Arguments that counter pose ‘hereditary’ versus ‘environmental’ as antithetical terms are fundamentally in error. Operationally, they are interpenetrating concepts. The effects of chromosomal aberrations can be mimicked in the phenotype by environmental pathogens, and genetic factors require for their complete manifestation suitable environmental conditions. (Kanner and Eisenberg 1956,

for their complete manifestation suitable environmental conditions. (Kanner and Eisenberg 1956, p.563)

By the 1960s, Kanner’s diagnosis of ‘infantile autism’ had become a recognised diagnosis for what was considered as a rare disorder primarily found in children with moderate to severe intellectual impairments. The first epidemiological study was published in 1966 and arrived at a prevalence figure for autism of 4.5 per 10,000 (Lotter 1966). The year after Kanner first proposed ‘autism’ as a diagnosis, Hans Asperger published a paper, largely ignored at the time, in which he described children

Hans Asperger published a paper, largely ignored at the time, in which he described children with no easily recognisable intellectual impairment, but with social communication problems (Asperger 1944). In the 1970s, psychiatrist Lorna Wing saw a similarity in some people she was seeing and those described by Asperger. Dr Wing’s ideas intersected with another psychiatrist, Michael Rutter, and formed the basis for the expansion of the concept of autism into Autistic Spectrum Disorders.

Revisiting the seminal papers by Wing and Rutter reveals the extent to which this expansion of the concept of autism was not the result of any new scientific discoveries, but rather new ideologies. For example, in her paper proposing the ‘Asperger Syndrome’ diagnosis, Wing (1981) describes six case histories with little in common with Asperger’s classic four cases beyond sharing a lack of social reciprocity. Four of Wing’s cases were adults, whereas all of Asperger’s were children; two had

reciprocity. Four of Wing’s cases were adults, whereas all of Asperger’s were children; two had some degree of learning disability, whereas none of Asperger’s did; most of Wing’s cases spoke late whereas most of Asperger’s spoke early; most of Wing’s cases were described as having little capacity for analytical thought whereas Asperger’s cases were described as highly analytical; and none of Wing’s cases were described as manipulative, mendacious, cheeky, confrontational or vindictive (terms

cases were described as manipulative, mendacious, cheeky, confrontational or vindictive (terms Asperger used about his cases). Furthermore, it is not clear why a lack of social reciprocity should warrant a diagnosis, or if it did, why it might not include most who have some degree of general intellectual disability or mental health problems. In addition to supporting the hypothesis that autism is genetic and that these genes act on an ‘autism spectrum’, Sir Michael Rutter also provided early

is genetic and that these genes act on an ‘autism spectrum’, Sir Michael Rutter also provided early support for Wing and Gould’s (1979) proposal that autism is characterised by a ‘triad’ of symptoms. Rutter (1978) reinforced the now familiar ‘triad’ by defining autism as being: (1) impaired social development which has a number of special characteristics out of keeping with the child’s intellectual level; (2) delayed and deviant language development that is also out of keeping with the child’s

level; (2) delayed and deviant language development that is also out of keeping with the child’s intellectual level; and (3) ‘insistence on sameness’ as shown by stereotyped play patterns, abnormal preoccupations or resistance to change. Since then, Rutter has consistently argued that autism and its spectrum is, beyond reasonable doubt, genetic in origin. Referring to autism spectrum disorders he states:

The estimate of heritability is something of the order of 90 percent. Because the twin and family studies provide the same conclusions, there can be considerable confidence that the heritability is very high with genetic factors accounting for the majority of the population variance in liability to develop the disorder. (Rutter 2006, p.68)

This quite deterministic approach to autism contrasts with Kanner and Eisenberg’s (above) and with other more general statements that Rutter makes about the accuracy and utility of estimating genetic contributions:

It is of little value to attempt to quantify the relative influence of the two [genes and environment] in any precise way, because it will vary by population and over time. Moreover, the precise estimates for the strength of genetic and of environmental influences have few policy or practice implications. (Rutter 2006, p.221)

By the 1980s much research was underway to try to find the biological cause of autism. This necessitated that psychiatrists and psychologists develop new theoretical concepts to give researchers a practical way forward for their investigations. Thus it was proposed that a lack of Theory of Mind (ToM) was the central deficit found in autism. ToM refers to the ability to understand that other people have their own plans, thoughts, beliefs, attitudes and emotions. It was suggested that there was

have their own plans, thoughts, beliefs, attitudes and emotions. It was suggested that there was an underlying cognitive structure responsible for ToM, which was viewed as an innate ‘module’ that is activated at around three years of age. The ToM Module (ToMM) was seen as dedicated, specific, fast, automatic, at least partly encapsulated, and its functioning as being largely independent of the general intellectual capacities of the individual (Baron-Cohen 1995). Autistic children were found to

intellectual capacities of the individual (Baron-Cohen 1995). Autistic children were found to have a significantly lower performance on certain tasks said to measure ToM compared with other cognitive tasks for testing intelligence and language capacities, leading to the hypothesis that autism was the consequence of a specific (biological) deficit in the ToMM. However, by the late 1990s, interest in ToM was waning. As the diagnosis of autism was increasing, no genes responsible for the ToMM had

in ToM was waning. As the diagnosis of autism was increasing, no genes responsible for the ToMM had been found, inconsistencies in ToM findings were apparent, the diagnosis was being made mainly in males, and interest in behavioural and biological continuums was increasing (Timimi, Gardner and McCabe 2010). Moving away from the idea that autism is caused by a discrete pathology, Professor Simon Baron-Cohen put forward the ‘extreme male brain’ theory of autism. His new theory was the first to

Baron-Cohen put forward the ‘extreme male brain’ theory of autism. His new theory was the first to properly recognise that a theory of causation must be able to explain the gender disparity (with the majority receiving a diagnosis being male) and so he concluded that people with autism simply match an extreme of the male profile, with a particularly intense drive to systemise and a low drive to empathise. In other words, autistic traits are biologically male, normally distributed, found as a

empathise. In other words, autistic traits are biologically male, normally distributed, found as a continuum in the population, and autism is simply the extreme end of this (male) continuum (Baron-Cohen 2003). A deficit in ToMM and the extreme male brain are two high-profile theories put forward in recent years in an attempt to explain the assumed biological basis of ASD. However, they are just two of multiple theories with plenty of others such as dysfunctional immune systems, abnormalities in

of multiple theories with plenty of others such as dysfunctional immune systems, abnormalities in certain brain structures, problems in neurological connectivity, problems in early neuronal cell migration, effects of vaccines, and so on, to choose from. The presence of multiple, as yet unconfirmed, theories reflects the lack of progress in identifying the biological basis of autism. Despite this, the concept of ASD has proved highly popular and it seems the more attention it has received the

the concept of ASD has proved highly popular and it seems the more attention it has received the wider its boundaries have become as it has now expanded into a condition said to potentially affect 160 per 10,000 (1.6%) of the population (Baron-Cohen et al. 2009), an over 3500 per cent increase in prevalence in just four decades. Failure to find any specific treatment, growing concern about an autism ‘epidemic’, and media coverage of the alleged link with vaccines have all contributed to the

autism ‘epidemic’, and media coverage of the alleged link with vaccines have all contributed to the high public profile of the diagnosis.

THE SCIENCE Evidence to support the claim that autism is a ‘neurodevelopmental disorder’ comes mainly from genetic and neuroimaging studies.

Genetic studies The argument that autism is a strongly genetic condition rests primarily upon twin and family studies (see below). Most of these studies focus on what might be called ‘core’ autism rather than broader ASD diagnoses such as Asperger Syndrome (Freitag 2007). In addition, there are no adoption studies (studies comparing the biological families with the adopted families of adoptees adopted early in life and who are subsequently diagnosed with autism), with the one study that

adopted early in life and who are subsequently diagnosed with autism), with the one study that included subjects who had been adopted (Szatmari et al. 2000) being a familial aggregate study comparing what the authors called the ‘lesser variant’ of Pervasive Developmental Disorders (PDD) (i.e. traits that do not amount to a full diagnosis) amongst the relatives of adopted children with a diagnosis of a PDD compared with the relatives of non-adopted children with a PDD diagnosis, and thus it is

of a PDD compared with the relatives of non-adopted children with a PDD diagnosis, and thus it is not a true adoption study. Methodological problems are numerous in the twin studies, including: selection bias; establishing zygosity; generalising results from twins to non-twins; the sex ratio in autism twin studies (of similar numbers of female and male twins); and, most importantly, heritability estimates relying on an assumption that the environments Mono-Zygotic (MZ/identical) and Di-Zygotic

estimates relying on an assumption that the environments Mono-Zygotic (MZ/identical) and Di-Zygotic (DZ/non-identical) twins experience are the same (Joseph 2006). To conclude that a concordance rate difference between sets of MZ and DZ twins (with MZ twins who share all their genes having higher rates of both getting the diagnosis than DZ twins who share on average half their genes) is the result of genetics only, one must first assume that both sets of twins experience similar psychosocial

of genetics only, one must first assume that both sets of twins experience similar psychosocial environments – the equal environment assumption (EEA). If MZ twins are treated more similarly than DZ twins then any, or all, of the difference in concordance rates could also be explained by non-genetic factors. It is well established that MZ twins are treated more similarly and experience more similar environments than do DZ twins or singletons (Joseph 2006). In addition, being an identical twin

environments than do DZ twins or singletons (Joseph 2006). In addition, being an identical twin produces its own psychological dynamic with identity confusion and swapping roles occurring more commonly. Therefore the assumption that the higher incidences of ASDs found in MZ twins can only be attributable to genetics is not sustained. Some researchers have reacted by trying to stand the criticism on its head, through suggesting that genetic factors lead twins to ‘choose’ their more identical

on its head, through suggesting that genetic factors lead twins to ‘choose’ their more identical environments. With such an argument (that genes are responsible for disrupting the EEA, therefore the difference in rates between MZ and DZ twins is still genetic) it is difficult to see how evidence could settle this without clear pathways being identified from specific genes to specific behaviours.

Notwithstanding these methodological issues, the findings from twin studies do not appear to provide particularly strong evidence that, after taking intellectual disability into account, much heritability for autism on its own is left. For example, in their classic study Folstein and Rutter (1977) studied 21 same-sexed twin pairs (11 MZ and 10 DZ) in which at least one twin was diagnosed with autism. There was a 36 per cent concordance rate for autism in MZ twins (i.e. 4 out of the 11 twin

autism. There was a 36 per cent concordance rate for autism in MZ twins (i.e. 4 out of the 11 twin pairs) compared with 0 per cent in DZ twins. In addition, 9 out of the 11 MZ twin pairs (including all the autism diagnosed pairs) were concordant for ‘cognitive deficits’, whereas only one of the DZ twins were. In other words ‘cognitive deficits’ was much more likely to be found as a concordant factor in MZ twins than autism – and separating generalised intellectual disability from autism per se

in MZ twins than autism – and separating generalised intellectual disability from autism per se continues to bedevil the autism research literature. In family studies it is even more difficult to separate environmental from genetic influences as children ‘inherit’ their family’s environment as well as genes. Despite this, it remains rare in the studies to come across the presence of a relative who has enough symptoms to warrant a diagnosis of an ASD (Timimi et al. 2010). In addition, confounds

has enough symptoms to warrant a diagnosis of an ASD (Timimi et al. 2010). In addition, confounds such as learning difficulties and cognitive impairments are often found to be just as strongly associated in families of those with an ASD diagnosis (Starr et al. 2001). The lack of clear evidence that autism is genetic is reflected in the lack of any genes for autism being discovered in molecular genetic studies. Thus various candidate genes, linkage studies, genome scans, and chromosome studies

studies. Thus various candidate genes, linkage studies, genome scans, and chromosome studies have failed to produce and reliably replicate any particular genes for autism. The more failures that pile up, the more ‘complex’ autism genetics must be according to advocates, whilst the most likely explanation for this finding – that there is no such thing as genes that ‘cause’ autism – remains unmentionable. The continuing failure to identify specifics seems to have resulted in the majority of the

The continuing failure to identify specifics seems to have resulted in the majority of the human chromosome being identified as potentially harbouring autism genes (Tsai 2004). Others have come to the more honest (and predictable) conclusion that:

Though numerous linkages and associations have been identified, they tend to diminish upon closer examination or attempted replication. (Wassink et al. 2004, p.272)

No major genome scan has produced significant and reproducible results… no candidate gene from a genome scan has shown a reproducible and statistically significant association with autism…no candidate gene that has inspired multiple studies has shown a robust and reproducible connection to autism. (Blaxill 2005, cited in Joseph 2006, pp.251–252)

More recent studies have focused on the number and density of Copy Number Variants (CNVs – these are bits of genetic code that are either missing where they should be or replicated where they shouldn’t be). These studies have come to similar conclusions, with CNV patterns being predictive of intellectual impairments but not ASD specifically (Crespi and Croft 2012; Gallagher and Merikangas 2012). Reviews of the genetic research published in Nature in articles written by some of the leading

Reviews of the genetic research published in Nature in articles written by some of the leading academics in this area concluded:

Many research teams have searched for genes that may be involved. They haven’t turned up any prime candidates yet, only dozens, maybe hundreds of bit players. (Hughes 2012, p.S2)
Genome wide association studies have failed to turn up any parts of the genome with statistical significance. (Williams 2012, p.S5)

Now that we have faster and cheaper technology for whole-genome scanning, the fact that despite thousands of these scans being completed we cannot find evidence beyond a tiny non-significant proportion of the assumed total genetic risk and with these small genetic associations being heterogeneous, crossing psychiatric diagnostic boundaries and more strongly related to learning difficulties than a diagnosis of ASD per se, should lead researchers to be less optimistic about finding ASD-specific

a diagnosis of ASD per se, should lead researchers to be less optimistic about finding ASD-specific genes. Researchers ought to be concluding that until proven otherwise we must assume there are no autism genes, rather than the current state of affairs where the assumption is that there are but we just can’t find them yet. The high ratio of males to females in ASD diagnoses also poses a problem. Genetic mechanisms need to account for this, such as autism being transmitted through the X

Genetic mechanisms need to account for this, such as autism being transmitted through the X chromosome, and thus far molecular genetic studies have failed to find an X- or Y-link. Some researchers have suggested that for disorders such as autism a ‘bottom-up’ rather than ‘top-down’ approach to molecular genetics is needed, where small contributions are additive. This approach seems to also cast doubt on the validity of a unitary concept of autism, recognising that these small genetic

cast doubt on the validity of a unitary concept of autism, recognising that these small genetic associations are heterogeneous and cross psychiatric diagnostic boundaries rather than being specific to any one (Verhoeven, Tuinier and Van Der Burgt 2008). A variety of studies also find higher rates of autism symptoms amongst psychologically or socially vulnerable groups, such as severely neglected children in some Romanian orphanages who have been described as having ‘quasi-autism’ (Rutter et al.

in some Romanian orphanages who have been described as having ‘quasi-autism’ (Rutter et al. 1999). However, as they meet the descriptive criteria for a diagnosis, there is no ‘quasi’ about it.

Neuroimaging An important consideration to take into account in any analysis of neuroimaging profiles is that of ‘neuroplasticity’. This refers to the remarkable ability of the nervous system (particularly in children) to grow and change in response to environmental stimuli. The remarkable plasticity of the human brain makes it difficult to determine precise cause and effect when individuals with differential life experiences subsequently show what appear to be differences in neurological

with differential life experiences subsequently show what appear to be differences in neurological structure or functioning. For example, Sadato and colleagues (1996) reported activation of the primary visual cortex by Braille reading, when studying participants who became blind early in life. Using positron emission tomography to assess activation in blind and sighted participants during tactile discrimination tasks, they discovered that blind subjects showed activation of primary and

tactile discrimination tasks, they discovered that blind subjects showed activation of primary and secondary visual cortex areas during these tasks, while sighted controls showed deactivation. What these and other similar studies suggest is a profound ability of the brain to remap its own contours, based on differential life experience. While these findings have opened new avenues of investigation for neuroscience, they make efforts to link neurological differences with behavioural disorders

for neuroscience, they make efforts to link neurological differences with behavioural disorders more difficult. When a group of individuals with what is categorised as aberrant behaviour are found to have statistically significant different patterns of brain functioning from normal controls, we must ask ourselves if the neurological discrepancies are a cause or an effect of the behavioural differences. This inconvenience makes it difficult for researchers to ‘pin down’ behavioural aberrations

This inconvenience makes it difficult for researchers to ‘pin down’ behavioural aberrations into neurologically valid and clinically meaningful categories. Thus, neuroanatomical and functional differences could be the result of environmental factors affecting brain development (like psychological trauma), differential maturation rates and variations resulting from heterogeneity in the sample (for example the effects of confounds such as intellectual ability).

The biggest problem for autism studies, however, comes from the lack of consistently replicated findings. For example, studies focusing on the cerebellum have documented an increase in cerebellar volume among children diagnosed with an ASD, while others have found smaller than average cerebellar volumes; yet others have reported no significant differences (Timimi et al. 2010). Similarly, studies on the amygdala have found wide inconsistencies, including some studies that found significant

on the amygdala have found wide inconsistencies, including some studies that found significant differences in volume and others that found no differences (Anagnostou and Taylor 2011; Dziobek et al. 2006). Similar inconsistencies have been found in cortical thickness with differences often becoming insignificant once intellectual ability level was controlled for (Hardan et al. 2006, 2009). In reviewing these discrepancies, sample heterogeneity (such differences reflecting differences in

In reviewing these discrepancies, sample heterogeneity (such differences reflecting differences in cognitive ability rather than ASD) is regularly cited as a problem (Nadesan 2005). Every now and then a new ‘brain scan’ study on autism announcing a breakthrough hits the headlines. In each case the claim has proven to be misplaced, but keeps the illusion that ‘we are close to understanding the biological basis of autism’ going. For example, in 2011 a study (Lai et al. 2011) that claimed it

biological basis of autism’ going. For example, in 2011 a study (Lai et al. 2011) that claimed it correctly predicted an autism diagnosis in 36 out of 39 children based on their functional magnetic resonance imaging proved to be over-optimistic. Critical review of this study concluded that all the authors had done was use technology to identify an area related to language problems and not something that can be used for differential diagnosis (Lange 2012). Thus, from whatever angle you come at

that can be used for differential diagnosis (Lange 2012). Thus, from whatever angle you come at autism, we are no further forward to discovering the biological basis of autism than when Kanner first articulated the concept. It is likely that this is because autism and ASD do not describe a coherent biological construct.

TREATMENTS, PROGNOSIS AND THE PROBLEM OF HETEROGENEITY Consistent with other major reviews (National Autistic Society 2003) we could find no evidence of methodologically sound and replicated research that demonstrates that particular interventions (whether educational, psychological, social or physical) specifically and differentially help those who have any form of autism (Timimi et al. 2010). Until specific treatments for ASD (as opposed to treatment approaches that work equally well with

Until specific treatments for ASD (as opposed to treatment approaches that work equally well with other individuals of similar ability levels) are adequately demonstrated through replicated controlled trials, we cannot and should not assume that the diagnosis has clinical value. With regard to prognosis, the same behaviourally defined syndrome (ASD) is applied to residents of institutions with little hope of living independently and has been suggested for men who have achieved greatness, such

hope of living independently and has been suggested for men who have achieved greatness, such as Mozart, Van Gogh, Edison, Darwin – all of whom, along with many others, have been retrospectively diagnosed as having an ASD (Fitzgerald 2004, 2005). From an ‘impairment’ perspective, this is virtually the entire human spectrum, suggesting that ASD, as it is currently defined, is too heterogeneous to have prognostic value. Not surprisingly therefore, more recent prospective studies have shown

to have prognostic value. Not surprisingly therefore, more recent prospective studies have shown remarkably diverse outcomes, with many who have been diagnosed with an ASD in childhood reportedly having few or no symptoms by adulthood (Szatmari 2011) and many of those diagnosed in adulthood having high levels of psychosocial functioning (Hofvander et al. 2009). This heterogeneity in what is now considered as ‘autism’ or ‘autistic’ is particularly problematic. Not only do the ‘core’ features

considered as ‘autism’ or ‘autistic’ is particularly problematic. Not only do the ‘core’ features such as difficulties in social communication have a large cross-over with people who would not consider themselves as having a ‘disorder’, but autism as a mental state (referring back to Bleuler’s original use of the term autism to denote a state of social withdrawal) and elements of autism symptoms as traits are common in a variety of mental health diagnoses from ADHD to depression and anxiety to

as traits are common in a variety of mental health diagnoses from ADHD to depression and anxiety to psychosis (see Table 2.1).

| Trait                                                                 | Overlapping psyychiatric and other presentations

------P_1000 System

Normalt er der ikke noget der hedder vedligeholdelsesplan for privat ejet og udlejet ejendomme. Der kan opstå situationer hvor det er påkrævet at lave en tilstandsrapport eller et budget for vedligeholdelse af ejendommen, men det er ikke noget der skal gøres på fast basis.

En vedligeholdelseskonto er der heller ikke nogen pligt til at oprette. Som udlejer skal man blot sørge for at have økonomisk råderum til at udføre den vedligeholdelse der skal udføres. Hvis udlejer dog ønsker at spare op i en vedligeholdelseskonto så er det en god ide at lave en vedligeholdelsesplan.

Ifølge lovgivningen skal udlejer holde ejendommen i god stand og overholde alle gældende bygningsreglementer og standarder. Dette indebær at foretage regelmæssig vedligeholdelse for at sikre, at ejendommen er sikker og beboelig for lejere.
 For at skabe et vedligeholdelsesbudget for en privat udlejet ejendom kan du følge disse trin:

For at skabe et vedligeholdelsesbudget for en privat udlejet ejendom kan du følge disse trin:
 1. **Vurder ejendommens tilstand**: Start med at foretage en grundig gennemgang af ejendommens generelle tilstand. Bemærk eventuelle synlige tegn på slid, skader eller områder, der kræver opmærksomhed.

2. **Lav en liste over vedligeholdelsesopgaver**: Opret en liste over alle de vedligeholdelsesopgaver, der skal udføres regelmæssigt, samt potentielle reparationer, der kan opstå. Overvej både indvendige og udvendige aspekter af ejendommen, herunder VVS, elektriske systemer, opvarmning og køling, tagdækning, vinduer, gulve og apparater.

3. **Estimer omkostninger**: Undersøg og indhent tilbud fra entreprenører eller serviceudbydere for hver vedligeholdelsesopgave. Dette vil hjælpe dig med at bestemme de anslåede omkostninger for hver vare. Sørg for at medtage omkostningerne til både materialer og arbejdskraft.

4. **Prioriter opgaver**: Når du har en liste over vedligeholdelsesopgaver og deres anslåede omkostninger, skal du prioritere dem baseret på deres hastende karakter og potentielle konsekvenser, hvis de forsømmes. Presserende reparationer eller sikkerhedsproblemer bør prioriteres højere.

5. **Lav en tidslinje**: Opret en tidslinje for, hvornår hver vedligeholdelsesopgave skal udføres. Nogle opgaver kan kræve øjeblikkelig opmærksomhed, mens andre kan planlægges til fremtiden. Overvej sæsonbestemte vedligeholdelsesbehov som f.eks. rensning af tagrender om efteråret eller eftersyn af VVS-systemer om foråret.

6. **Tildel midler**: Baseret på de anslåede omkostninger og prioriterede opgaver, skal du tildele midler i dit budget til hver vedligeholdelsesvare. Det er vigtigt at have en separat vedligeholdelseskonto eller reservefond til at dække disse udgifter.

7. **Gennemgå og opdater regelmæssigt**: Gennemgå og opdater dit vedligeholdelsesbudget regelmæssigt. Ejendommens tilstand kan ændre sig over tid, og uventede reparationer kan opstå. At være proaktiv og have et velplanlagt budget vil hjælpe dig med at styre vedligeholdelsesomkostningerne effektivt og sikre, at din ejendom forbliver i god stand.

Det er også en god ide at konsultere en ejendomsadministrator eller en professionel med erfaring i ejendomsvedligeholdelse for at sikre, at dit budget er omfattende og realistisk. De kan give værdifuld indsigt og vejledning baseret på deres ekspertise inden for området.

The West has a long and violent history of targeting autistic people in particular and disabled people in general. In contemporary times, such acts of violence are occurring with an aching frequency; we are continually and even routinely encountering resonant stories of violence against autistic people as these stories circulate through our news sources, through our culture and through our lives. Such acts of violence seldom go unnoticed by disability advocates and activists. Autistic

lives. Such acts of violence seldom go unnoticed by disability advocates and activists. Autistic self-advocates and their allies, for example, have long been watching the headlines, marking and mourning the surging numbers of autistic victims of violence and demanding political action. As with other forms of ableist violence, instances of autism violence are seldom understood by mainstream society as pointing to a troubling social phenomenon or as symptomatic of deeply entrenched ableist

society as pointing to a troubling social phenomenon or as symptomatic of deeply entrenched ableist systems of exclusion. To the contrary, instances of violence against autistic people are most often framed by news media and mainstream advocacy organisations alike as ‘unthinkable’ and ‘senseless’: unpredictable random individual tragedies. Throughout this chapter, I argue that the persistent social move to locate autism violence outside the bounds of reason dangerously obscures the mundane and

move to locate autism violence outside the bounds of reason dangerously obscures the mundane and deadly ways in which autism violence is being rendered absolutely thinkable, reasonable and even normal. Attending to the normative and normalising nature of such stories of autism violence enables us to ask difficult and important questions about the culture in which we live. Critically attending to such stories allows us, for example, to ask the following: how do dominant versions of autism that

such stories allows us, for example, to ask the following: how do dominant versions of autism that characterise it as a condition of human life instead of a lived human condition – a some ‘thing’ and not a someone – allow for and even catalyse a collective cultural failure to recognise violence against autistic people as a significant and pressing socio-cultural problem? How are dominant cultural understandings of autism as some ‘thing’ pathological and so, as some ‘thing’ to be ‘against’,

understandings of autism as some ‘thing’ pathological and so, as some ‘thing’ to be ‘against’, creating the conditions of possibility that render some lives more vulnerable to murder and other forms of (normative) violence?

ON ‘LIVING WITH’ AUTISM In contemporary times and in Western/ised spaces, there seems to be a collective, cultural fixation on – or, perhaps even, obsession with – ‘life with’ autism. These words – ‘living’ and ‘with’ – are so commonly strung together in relation to autism in everyday life that they appear everywhere from newspaper articles to government reports, from scientific studies to celebrity appeals, from fundraising initiatives to self-help books. Consider but a few of a vast number

appeals, from fundraising initiatives to self-help books. Consider but a few of a vast number of recent examples:

• A Vancouver Sun headline: ‘Living with Autism’ • A BBC headline: ‘Living with Autism in the UK’ • An article published in Redbook Magazine: ‘Living with Autism: Losing My Little Boy’
• A common phrase: ‘1 out of every 110 children is living with autism’ • A parent resource: ‘Living with Autism: Practical Strategies for Supporting People with Autism Spectrum Disorders’
• An Evening Herald headline: ‘Breakthrough brings fresh hope for families living with autism’

• An Evening Herald headline: ‘Breakthrough brings fresh hope for families living with autism’
• Kathleen Dillon’s (1995) book: ‘Living with Autism: The Parents’ Stories • An oft-repeated ‘fact’ that ‘1 to 1.5 million Americans live with Autism Spectrum Disorder’
• A 2008 Easter Seals Study ‘Living with Autism’ • A Daily Press article: ‘Living with autism disconnects kids from the world’ • An edited collection of stories: ‘That’s Life with Autism: Tales and tips for families with autism’

• The common biomedical observation: ‘Many persons living with autism have significant communication challenges’
• Elizabeth Attfield and Hugh Morgan’s (2006) book: ‘Living with Autistic Spectrum Disorders: Guidance for Parents, Carers and Siblings’

• A talk show episode ‘Living with Autism’. The proliferation of this ‘living with autism’ phraseology demonstrates many things, but one thing is certain: in contemporary times and in Western/ising spaces, the category of autism is involved in the re/production of notions of ‘life’. Perhaps the most literal way of reading the meaning of the phrase ‘living with autism’ is as an instance of ‘person first’ language – a dominantly used and widely accepted system of naming disability that places the

first’ language – a dominantly used and widely accepted system of naming disability that places the ‘person’ before the ‘disability’ (e.g. ‘person with a disability’ or ‘people with autism’). When confronted with the phraseology ‘living with autism’, we might reasonably and literally understand it as referencing an individual life ‘with’ autism, as referencing, in other words, a person with autism. Indeed, there are many instances where the ‘living with’ phraseology is evoked precisely in this

Indeed, there are many instances where the ‘living with’ phraseology is evoked precisely in this way. To draw on a few examples from the list above: ‘1 to 1.5 million people in the USA live with an Autism Spectrum Disorder’ or ‘many persons living with autism have significant communication challenges’ or ‘living with autism disconnects kids from the world’. Each of these statements suggests that the condition of ‘living with autism’ is a condition of an individual ‘with’ it.

As a great many disability studies scholars and activists have argued, far from being merely a politically correct system of naming, the ‘person-first’ lexicon also functions to organise disability meanings in particular ways. In her critique of person-first language, Titchkosky (2001, p.126) observes: ‘Wherever and however this [“person-first”] lexicon appears, it always recommends that disability should be spoken of as something that comes along “with” people.’ Indeed, if one out of every

should be spoken of as something that comes along “with” people.’ Indeed, if one out of every 110 children is a child with autism, it follows that autism – at least in some sense – can only be located ‘with’ that one child. It is, in other words, discursively forbidden from being ‘with’ the other 109 children. Statements such as ‘many persons living with autism have significant communication challenges’ suggest that communication challenges do not, in any essential way, belong to all of us – to

suggest that communication challenges do not, in any essential way, belong to all of us – to the realm of social interaction, for example – but, rather, belong to persons afflicted ‘with’ a biomedical condition: persons with autism. Far from being merely a politically correct system of words or names, the ‘person first’ lexicon functions to systematically organise disabled people as ‘just people’ – regular, ordinary people who happen to have a disability. In organising disability (and so

– regular, ordinary people who happen to have a disability. In organising disability (and so autism) in this way, the ‘person first’ lexicon functions to localise disability squarely in the individual, thereby forbidding any conceptualisation of its existence outside of the individual: in the socio-cultural environment, for example, or in inter-subjective relations. The solidification of disability’s status as an individual condition is not, however, the only interpretive move made by

disability’s status as an individual condition is not, however, the only interpretive move made by person-first language. Person-first language does, as Brown (2011) suggests, possess a kind of ‘attitudinal nuance’. In problematising the specificity of the phrase ‘person with autism’, Sinclair (1999) offers us three critiques. First, he argues, the phrase ‘person with autism’ suggests that the person and autism are somehow separate entities: I can be separated from things that are not part of

and autism are somehow separate entities: I can be separated from things that are not part of me, and I am still the same person. I am usually a ‘person with a purple shirt,’ but I could also be a ‘person with a blue shirt’ one day, and a ‘person with a yellow shirt’ the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. (Sinclair 1999) What Sinclair reminds us, in other words, is that the phrase ‘person with autism’ suggests that

What Sinclair reminds us, in other words, is that the phrase ‘person with autism’ suggests that autism is not essential to personhood.

He continues: Characteristics that are recognised as central to a person’s identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about ‘male’ and ‘female’ people, and even about ‘men’ and ‘women’ and ‘boys’ and ‘girls,’ not about ‘people with maleness’ and ‘people with femaleness’. (Sinclair 1999) Finally, Sinclair suggests that the ‘person-first’ nomenclature presumes a state of bad-ness or wrongness. In his words, ‘[i]t is only when

nomenclature presumes a state of bad-ness or wrongness. In his words, ‘[i]t is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person’ (Sinclair 1999). Further examining the phraseology ‘person with autism’, the preposition ‘with’ – wedged between person and autism – functions, discursively, to separate the ideological category of ‘person’ from a biomedical condition of ‘autism’. It creates an artificial

ideological category of ‘person’ from a biomedical condition of ‘autism’. It creates an artificial disconnect between the (good) individual person and the (bad) autism that comes to be associated ‘with’ it as an add-on to this person. To be ‘with’ autism (and not, for example, to be of it, or in it) is to locate autism ‘with’ the individual while asserting its essential separation from it. The ‘with’, thus, performs a paradoxical act of separation and association. As a ‘person-first’ lexicon

‘with’, thus, performs a paradoxical act of separation and association. As a ‘person-first’ lexicon organises autism into some ‘thing’ located squarely in the individual, it also, and simultaneously, forbids it from being understood as entwined with or integral to a person’s personhood. As we analyse the social significance of the ‘living with’ phraseology in terms of a ‘person-first’ lexicon, we must account for the meaningful slippage between the expression ‘person with autism’ and its vital

must account for the meaningful slippage between the expression ‘person with autism’ and its vital permutation: ‘person living with autism’. While these two expressions are certainly related linguistic technologies that seem to be used interchangeably in everyday talk, they are not equivalent formulations and, as such, the interpretive work they perform is not identical. While, in the former phraseology, the word ‘with’, alone, is wedged between the person and the autism, in the latter, two

the word ‘with’, alone, is wedged between the person and the autism, in the latter, two words – ‘living with’ – are wedged between, and this difference is significant. While the ‘with’ posits autism as some kind of a personal possession or appendage that has become associated with or tied to an individual person, the ‘living with’ underscores autism as an appendage that has become attached to the life of the person. Where the phrase ‘person with autism’ renders autism as some (undesirable,

the life of the person. Where the phrase ‘person with autism’ renders autism as some (undesirable, pathological) ‘thing’ some people happen to ‘have’, the phrase ‘person living with autism’ renders autism as some (undesirable, pathological) ‘thing’ some people have to ‘live with’.

Most interestingly, let us note how the vital permutation of ‘person-first’ language has opened up the condition of being ‘with’ the individualised pathology of autism to not only include ‘persons living with autism’ as this is conceived of in the strictest sense, but also to include people who, quite literally, have autism in their lives. Indeed, we are, for example, seemingly, constantly confronted in the media, in advocacy initiatives as well as in everyday conversation with parent

confronted in the media, in advocacy initiatives as well as in everyday conversation with parent narratives that characterise their relationship with their autistic child in terms of a ‘life with autism’. Families, as well as communities, nations and, indeed, (the) United Nations, are all commonly understood to be ‘living with autism’. While each of the examples of cultural artefacts appearing in the long list above succeeds in confirming autism’s taken-for-granted status as an individual

in the long list above succeeds in confirming autism’s taken-for-granted status as an individual condition, very few of them articulate living with autism as a condition of the individual alone. For example, Dillon’s (1995) book Living with Autism does not recount stories of individuals living with autism, as its title would seem to suggest. Rather, the book tells the stories of individuals (parents, in this case) living with individuals living with autism. Oprah Winfrey’s (2007) ‘Living with

in this case) living with individuals living with autism. Oprah Winfrey’s (2007) ‘Living with Autism’ episode focused on the narratives and perspectives of relationally non-disabled parents, siblings, advocates and physicians; people who, in some way, had autism in their lives. Likewise, the Easter Seals study ‘Living with Autism’ surveyed over 1600 parents of autistic people about their ‘life with autism’. With these examples, it becomes evident: another way the phrase ‘living with autism’

with autism’. With these examples, it becomes evident: another way the phrase ‘living with autism’ comes to be employed and understood in contemporary times is as a way to describe a collective condition of ‘life with’ the individualised condition of autism. This vitalised ‘people-first’ system of meaning produces autism (as is, invariably, embodied by an individual autistic person or a group or subpopulation of individual autistic people) as a condition afflicting the social whole, as some

or subpopulation of individual autistic people) as a condition afflicting the social whole, as some pathological element that is separate from this whole, and that has, as a matter of misfortune, become attached to collective life. Indeed, in mainstream Western culture, autism is almost exclusively depicted as an undesirable pathological ‘condition’ of the (social and individual) body, a ‘condition’ that is rendered conditional to particular individuals (marked as unfortunate) and their

that is rendered conditional to particular individuals (marked as unfortunate) and their (equally ‘unfortunate’) families, communities and nations. And so while autism is framed as ‘a part’ of human life…as ‘something’ that ‘we’ as humans do from time to time, in various ways, come to ‘live with’…it is not, we are told, the ‘stuff’ of human life, it is not essential to or continuous with human vitality.

This ideological abjection from the category of human life has a long history rooted in the rise of liberalism and the resultant proliferation of diagnostic categories under this regime. Autism is not a way of living, says modern medicine and the biological sciences in chorus, it is a series of pathological ‘tendencies’; a characteristic ‘trait’, declared Bleuler back in 1911; a collection of ‘symptoms’, calculated Kanner in 1943, it is ‘echolalia’, ‘stereotypy’, ‘literalness’. Autism is not

calculated Kanner in 1943, it is ‘echolalia’, ‘stereotypy’, ‘literalness’. Autism is not life, promised Bettelheim (1972); it is a prison. It is, he said, a ‘withdrawal’ from humanity – a chilling effect of a cold mother. Autism is not life, said Lovaas (1987), it is an exhibition of ‘inappropriate behaviours’. It is a mind blind to intentionality, according to Baron-Cohen (1997). It is inhumane: a ‘lack of empathy’. Such a history of pathologisation is continuous with the present moment.

a ‘lack of empathy’. Such a history of pathologisation is continuous with the present moment. Autism-as-pathology is some ‘thing’ other than human life, says contemporary biomedicine. It is ‘misfiring’ neurons, ‘too slow’ development and an erroneous set of genes. And now sliding outside of biomedicine proper, autism is not a life, say dominant mainstream advocacy organisations, it is that which threatens life. It is a disease of epidemic proportions, spreading faster, to borrow a commonly

threatens life. It is a disease of epidemic proportions, spreading faster, to borrow a commonly evoked advocacy phrase, than ‘AIDS, diabetes, and cancer combined’. Autism is not a life, say governments and the UN, for it gets in the way of the good life of neoliberal development (or at least so the myth goes…). Autism, we are told, prevents otherwise respectable citizens from the ‘full’ enjoyment of humanity and its ostensibly guaranteed rights and freedoms. Autism forbids individuals,

of humanity and its ostensibly guaranteed rights and freedoms. Autism forbids individuals, communities and nations from ‘fully’ living. And so this idea is repeated over and over again by a great many people and in myriad different ways; to ‘live with’ autism – whether it be collectively or individually or both – is to bear a condition (i.e. pathology) of life. What sensibility of life do such contemporary representations of autism permit us to think, or better, what do they inaugurate? As the

representations of autism permit us to think, or better, what do they inaugurate? As the category of living person, living human, or perhaps ‘life’ more broadly, is, under a liberal rule of life, discursively, made to come before and so to exist as separate from ‘autism’, and as ‘autism’ is transformed into some pathological ‘thing’ that is not of life but has, as a matter of misfortune, come to be affixed to it, we can observe how the vital category of the living human – the vital category of

be affixed to it, we can observe how the vital category of the living human – the vital category of life itself – is emptied, in some essential way, of any possibility of being autistic. Life, in other words, is being made a condition of non-autism. And while life is always life, the condition of ‘life with’ autism comes to be immediately understood as lives that bear the origin of their own undoing.

This overwhelmingly prominent cultural logic is both dangerous and deadly. Autism violence is being managed through a powerful cultural understanding that the only vital way to ‘live with’ autism is to long for, and indeed work toward, ‘life without it’. Within this framework, the living autistic body – the body that does not, cannot or chooses not to move toward a convincing performance of non-autism – is cast as an ideological and material site of resistance and so a threat to (collective)

– is cast as an ideological and material site of resistance and so a threat to (collective) normative, liberal life. As a way to both address and assess this danger, I move to trace out the danger of rationalising autism in this way by attending to a series of newspaper articles reporting on two recent autism murders – the murders of Jason Dawes and Katie McCarron – where autism was articulated as the target of, and the underlying reason for, violence. Both of these instances of violence tell

as the target of, and the underlying reason for, violence. Both of these instances of violence tell the story of an autistic person (i.e. an ‘individual living with autism’) who was murdered by a non-autistic individual ‘living with’ this ‘individual living with autism’.

LIFE WITHOUT AUTISM: THE MURDERS OF JASON DAWES AND KATIE MCCARRON On 4 August 2003, ten-year-old Jason Dawes was murdered in New South Wales, Australia. His mother, Daniela Dawes, admitted to suffocating Jason before attempting to kill herself (she was discovered and revived). Dawes was arrested and charged, initially, with murder, a charge that was soon reduced to manslaughter when the Crown accepted that the defendant was experiencing depression at the time of the killing. To this charge of

that the defendant was experiencing depression at the time of the killing. To this charge of manslaughter due to diminished responsibility, Dawes pleaded guilty. On 2 June 2004, the Parramatta District Court ruled that Dawes be immediately released on a five-year good behaviour bond. From a by-line in the Sydney Morning Herald: ‘Her son died at her own hand but a judge ruled yesterday that Daniela Dawes had been through too much to be sent to jail’. After this unusual non-custodial sentence was

Dawes had been through too much to be sent to jail’. After this unusual non-custodial sentence was handed down, Justice Roy Ellis addressed Daniela Dawes directly: ‘I wish you all the best’, he said. Three years later, on 13 May 2006, three-year-old Katie McCarron was suffocated in her grandmother’s home in Morton, Illinois. Katie’s mother, Dr Karen McCarron, confessed to the murder. McCarron also attempted suicide and she too survived. McCarron was arrested and charged with murder in the first

attempted suicide and she too survived. McCarron was arrested and charged with murder in the first degree, to which she pleaded not guilty by reason of insanity. On 17 January 2008, Dr McCarron was convicted of the murder of her daughter in the first degree and was given a life sentence of 36 years in prison. I have chosen to focus on these two stories of violence not because they are particularly unusual or rare. They are neither. In the past decade, dozens upon dozens of reports of

unusual or rare. They are neither. In the past decade, dozens upon dozens of reports of autism-related murders have circulated through the popular Western/ised news media. Joel Smith’s website This Way of Life (archived since 2006) was foundational in documenting these reports, providing a space to acknowledge and connect instances of autism violence and track their judicial outcomes. Smith’s website also made it possible for the autistic community and their allies to, collectively, mourn the

also made it possible for the autistic community and their allies to, collectively, mourn the victims of autism violence. The task of bearing witness has, in many ways, become central to the work of autistic self-advocacy.

While Smith’s site is now archived, other community members have continued this difficult work of monitoring the headlines and mourning the victims of ableist violence (see, for example, the work of Kerima Çevik and her website The Autism Wars). In 2012, the Autistic Self Advocacy Network (ASAN) (in collaboration with other disability organisations such as Not Dead Yet and the National Council of Independent Living) held a Day of Mourning, remembering disabled people who were killed by a

of Independent Living) held a Day of Mourning, remembering disabled people who were killed by a parent or caregiver. In a statement on the ASAN website, Zoe Gross writes: ‘On March 30th, 2012, we held vigils in 18 cities to remember those we have lost, and to remind the world that their lives had value. On March 31st, 2012, a 4-year-old autistic boy named Daniel Corby was drowned in a bathtub by his mother’. As Gross’s statement makes clear, this work is ongoing. While the phenomenon of autism

his mother’. As Gross’s statement makes clear, this work is ongoing. While the phenomenon of autism violence is well known, documented and felt in autistic communities (e.g. the day of mourning is now marked annually with vigils held around the world), in mainstream culture the names of victims of autism violence are seldom linked together, an act of forgetting that is also an act of violence. Even less often are these names linked to a culture that so often produces autism as somehow separate

less often are these names linked to a culture that so often produces autism as somehow separate from the category of life. I should note that my interest in the re/telling of these stories of violence, is not, at least strictly speaking, a search for quick or easy origins. I do not, in other words, attempt to empirically decipher who or what is responsible for the violence enacted against these children. My critique – an interpretive one – resists the (persistent, seductive, collective) desire

My critique – an interpretive one – resists the (persistent, seductive, collective) desire for moral clarity in favour of an analysis of the ways violence is functioning in our culture – how this violence is made possible and even how it is framed as necessary. Rather than attempting to isolate an underlying cause, these instances of violence against autistic people must be read as an immediate cause for concern, an observation that demands that we – all of us ‘living with autism’ and so all of

for concern, an observation that demands that we – all of us ‘living with autism’ and so all of us who belong to and participate in the making of this culture – look again to the cultural meanings we are, collectively, making of autism and non-autism and the relationship between the two. I suggested, earlier, that the conceptualisation of autism as some pathological ‘thing’ that is not ‘lived’ but ‘lived with’ – where this ‘living with’ is understood, implicitly, as something done by both

but ‘lived with’ – where this ‘living with’ is understood, implicitly, as something done by both individuals and collectives – is animating dominant enactments of autism advocacy in this contemporary moment. I suggested, too, that this animus is generating dangerous and deadly ideological and material consequences. Let us examine this further and in relation to the stories of violence detailed above.

MAKING SENSE OF MURDER In the media coverage of the Dawes and McCarron trials, autism was never represented to be continuous with life. Reflecting dominant cultural understandings of autism, autism was narrated – in the newspaper headlines and in the articles that followed them, from the defence strategies to those of the prosecution, from the perpetrators’ confessions to witness testimonials to the judges’ final pronouncements – as nothing more than life’s unfortunate and undesirable

to the judges’ final pronouncements – as nothing more than life’s unfortunate and undesirable condition; a condition, moreover, that served the purpose of rendering thinkable the seemingly unthinkable: the act of murdering one’s own child. Put differently, Jason and Katie’s murders were transformed into one more unfortunate and undesirable outcome of the unfortunate and undesirable condition of ‘living with autism’.

Severity In both court cases and the media coverage that surrounded them, the biomedical status of the victim (and their subsequent ‘potential’) became a, or perhaps even the, salient detail that was evoked, substantiated, contested and debated over. The murders were qualified with questions of autism’s ‘severity’ and of the subsequent potential of (all) life living ‘with’ it (i.e. not just the autistic children’s potential but the potential of the parents and families ‘living with’ the child

autistic children’s potential but the potential of the parents and families ‘living with’ the child living with autism). While Katie McCarron’s autism was repeatedly characterised as ‘not severe’, as ‘mild’ even, Jason Dawes was described as having had ‘severe autism’. His mother, Daniela Dawes, in the words of the judge presiding over her sentencing hearing, ‘was required to educate, feed, toilet, bathe, entertain and love’ him. There is a straightforward biopolitical logic of violence that

bathe, entertain and love’ him. There is a straightforward biopolitical logic of violence that underpins this cultural preoccupation with ‘severity’: if autism is not continuous with human life but is – as per the dominant refrain of our culture – that which must be ‘lived with’…if autism is not, in other words, conceived of as (integral to) a living person, but is, instead, understood as a pathology that has become attached to this person, it follows that a person ‘living with’ autism is a

that has become attached to this person, it follows that a person ‘living with’ autism is a person whose relative ‘amount’ or ‘quality’ of life is, and can be, determined through a calculus of autism’s severity. The implicit, and surely violent, logic goes something like this: if a ‘mild’ autism (as pathology) becomes attached to a presumed otherwise normative life, this life is mostly un-afflicted and unaffected. In other words, normative life – unquestionably naturalised as inherently healthy

and unaffected. In other words, normative life – unquestionably naturalised as inherently healthy and apolitically understood as at once good and desirable – is (at least mostly) unencumbered, permitted to thrive. However, as the ‘severity’ of autism’s pathology increases, and as it increases its hold on life, normative life is understood to be ever more compromised: weakened, siphoned, lessened. The act of characterising Katie’s autism as ‘mild’ evoked a simultaneous understanding of a mostly

The act of characterising Katie’s autism as ‘mild’ evoked a simultaneous understanding of a mostly normative life, one that minimally affected the normative lives of those around her. Jason’s autism, by contrast, became understood as a condition that was inhibiting the very human possibility of life itself. Jason’s status as severely autistic was framed as preventing him (and his parents, who ‘lived with’ him and his autism) from fitting in to the normative order of human life: a vital and

‘lived with’ him and his autism) from fitting in to the normative order of human life: a vital and vitalising order where parents ought not be required to bathe and toilet (and love!) their ten-year-olds and where children ought to be endowed with the (presumed) human promise of growing up to become ‘fully’ independent adults. In other words, Jason’s autism was framed and so understood as inhibiting and even draining an otherwise normative life and the otherwise normative lives of his parents,

and even draining an otherwise normative life and the otherwise normative lives of his parents, family and community.

The violence inflicted on the bodies of these two children, to borrow from Michalko’s haunting analysis of the murder of Tracy Latimer in Canada in 1993, was ‘governed and evaluated by a rationality of opposites’. The relationship between disability and non-disability, autism and non-autism, is split here into a simple binary. In both the McCarron and the Dawes murder cases, non-autism was made synonymous with the hope of human possibility, while autism came to be understood as hopelessness

synonymous with the hope of human possibility, while autism came to be understood as hopelessness and limiting. Where non-autism was conceived of as life, autism was made a life-draining pathology, a kind of biopolitical death. With this in mind, non-autistic life ‘living with’ autism is reframed not only as a life tied to death, as we all invariably are, but as a life that has become affixed to and with a pathological non-life.

Spectrum Yet, just as we are given with this bleak image of autism wasting away (normative) life, we are simultaneously confronted with the spectral quality of the DSM-IV and most especially the DSM-5 versions of autism. Indeed, the newly minted fifth edition Diagnostic and Statistical Manual does away with the various categories of autism diagnoses (Asperger Syndrome, Rett Syndrome and so on) in favour of a single wide-reaching diagnosis of ‘Autism Spectrum Disorder’. The DSM-5 represents a

in favour of a single wide-reaching diagnosis of ‘Autism Spectrum Disorder’. The DSM-5 represents a move away from categorical diagnosis (i.e. so you either meet the diagnostic criteria of this thing called autism or you don’t), favouring instead a dimensional diagnosis (i.e. to what degree do you meet diagnostic criteria). This notion of autism not as a static pathology but as a graded range or ‘spectrum’ of pathologies represents a biopolitical rationality insofar as it functions to manage

‘spectrum’ of pathologies represents a biopolitical rationality insofar as it functions to manage the normative category of life. The notion of spectrum offers a hopeful (which, from the vantage point of capitalism, most often means lucrative) narrative of the possibility for an incremental recovery of normative life. Indeed, the moral hierarchy of the ‘autism spectrum’ functions dangerously to condition the emergence of a popular and violently normative understanding that ‘life with autism’

condition the emergence of a popular and violently normative understanding that ‘life with autism’ always can and ought to be actively moving along the pathological gradations of autistic difference toward the most vital pole of ‘life without it’. The spectral quality of the autism spectrum as a conceptual device for thinking about a range of autism ‘severities’ gives birth to a whole range of vital possibilities (ways of getting better) and non-vital limits (ways of wasting) within the

of vital possibilities (ways of getting better) and non-vital limits (ways of wasting) within the category of autism itself: it organises many small and incremental ways of ‘living’ and, also and necessarily, many and incremental ways of ‘dying’. In this way, the ‘spectrum’ makes possible an array of new kinds of living people: people who ‘live with’ a pathological or ‘life-threatening’ autism; and ‘not yet living’ people who – depending on the ‘severity’ of their (non-vital) signs of autism

and ‘not yet living’ people who – depending on the ‘severity’ of their (non-vital) signs of autism and the degree to which they have the capacity to approximate the (vital) signs of non-autism or normalcy – become conceptually understood as ‘almost living’ or ‘mostly dead’.

A rational calculus of life and death I return now to the two murder cases in order to give an account of the danger of this spectral logic. Even as Jason Dawes was narrated as ‘severely autistic’, his life was not understood to be, by virtue of the ‘severity’ of his autism, ipso facto without potential. Rather, the narrative of his life and death told in the courts and by the media was the story of a life that had, gradually, lost its vital potential. In the newspaper reports of the murder

of a life that had, gradually, lost its vital potential. In the newspaper reports of the murder and subsequent trial Daniela Dawes was called a ‘crusader for her son’, having ‘battled doggedly for years to get the educational, behavioural and medical support her son needed’, moving the family around to secure the best treatments and services – treatments and services they ‘didn’t get’. Jason was narrated as entering puberty at the time he was killed and, at this time, time was understood to

narrated as entering puberty at the time he was killed and, at this time, time was understood to have run out. According to the Herald: ‘When Jason was diagnosed with autism at 18 months, doctors had recommended he get 20 hours of early intervention help a week. All his parents could secure for him was three hours a week’. Due to lack of access to biomedical ‘early intervention’ therapies (an issue that had much to do with the family’s class and rural location), at ten years old, Jason, we were

that had much to do with the family’s class and rural location), at ten years old, Jason, we were told, had outgrown the crucial ‘window’ of opportunity where his ‘severe autism’ might have been lessened by a normative rehabilitation. And so, the child was, in the word of defence lawyer, Roland Bonnici, ‘doomed’. Interpreted as being fixed to and with autism (i.e. as living ‘with’ severe autism in a permanent way), Jason’s life was conceptually organised as life marked with, and therefore for,

a permanent way), Jason’s life was conceptually organised as life marked with, and therefore for, death: ‘doomed’.

The logic of violence extends beyond the particularities of Jason’s individual life, however. His mother, too, was framed as having to ‘live with’ the fixity of this ostensibly non-vital human state. Said Judge Roy Ellis: ‘[Daniela Dawes] constantly lived with the fact that her son had lost his best chance of acquiring greater life skills because of the failure of authorities to provide appropriate intervention during his early formative years’. And so Daniela Dawes, whose life and the life of

intervention during his early formative years’. And so Daniela Dawes, whose life and the life of her son came to be understood as being ‘with autism’ in a permanent way, was subsequently interpreted as having been ‘driven’ to commit a ‘tragic’ but, nonetheless, understandable act of murder; an act that was framed as acting in the name of life (her own, her family’s, the community, the nation) and was thus, under a liberal rule of life, coded as both reasonable and, even, as necessary. The story

was thus, under a liberal rule of life, coded as both reasonable and, even, as necessary. The story of the life and death of Katie McCarron, however, presents us with still another permutation of the dangerous story of what happens when autism and non-autism are understood be fixed ‘with’ one another. Unlike the Dawes case, the murder of Katie McCarron was not represented as a condition of how severe or demanding or trying (her) autism was; Katie’s autism was understood to be ‘mild’, her

how severe or demanding or trying (her) autism was; Katie’s autism was understood to be ‘mild’, her behaviours were described as ‘good’, palatable, approximating the norm. At the trial, Katie’s father told the court that his daughter ‘wasn’t prone to kicking, screaming, biting or behavior sometimes associated with more severe autism cases’. ‘Katie was always a well-behaved little girl’, he said, adding that she was developmentally behind for her age but [had] ‘learned the alphabet, knew shapes

adding that she was developmentally behind for her age but [had] ‘learned the alphabet, knew shapes and colors, and recognised various animals’. Neither was Katie’s murder made to be a condition of the accessibility or availability of resources. Her family was, in many ways, privileged; they were white, wealthy, educated, they had help in the home and were otherwise well positioned to secure for Katie the latest in rehabilitation treatments. Indeed, the court heard of how as a two-year-old

for Katie the latest in rehabilitation treatments. Indeed, the court heard of how as a two-year-old (unlike Jason, still ‘form-able’) Katie was sent to a top-notch out-of-state school where she received intensive therapeutic ‘interventions’. By all accounts, Katie was catching up to her milestones, moving her way along the spectrum toward normalcy.

Yet, despite Katie’s purported proximity to the markers and milestones of normativity, the court transcripts describe a mother who saw an otherwise normative or non-autistic child that was ‘unfixable’ insofar as she was ‘fixed’ with and to her autism. ‘I loved Katie very much, but I hated the autism so, so much’, said McCarron in a taped confession that was played at the trial. ‘…I hated what it was doing to her… I just wanted autism out of my life’. Indeed, in a cross-examination McCarron

it was doing to her… I just wanted autism out of my life’. Indeed, in a cross-examination McCarron told defence lawyer Marc Wolfe that she did not intend to kill her daughter. Said Wolfe: ‘Who did you think you were killing?’ ‘Autism,’ replied McCarron. It was this portrait of a three-year-old child with ‘mild’ autism who was rapidly moving in the right and vital direction of good, human life without it that led many to conclude that – unlike the violent act of Daniela Dawes that was understood

it that led many to conclude that – unlike the violent act of Daniela Dawes that was understood to be necessitated by autism’s presence – McCarron’s act of killing her daughter had little to do with autism at all. In a statement to reporters, Katie’s grandfather, Michael McCarron said: I am positively revolted when I read quotes that would imply any degree of understanding or hint at condoning the taking of my granddaughter’s life. […] [This is] a very straight-forward murder case. This was not

taking of my granddaughter’s life. […] [This is] a very straight-forward murder case. This was not about autism. […] We’re not dealing with desperation here. We’re not dealing with ‘we have to end this child’s pain. Vis-à-vis Karen McCarron’s confession where she repeatedly and explicitly describes her hate of autism, as well as her explicit intent to rid her daughter of autism by killing ‘it’, this murder most certainly had everything to do with autism. Michael McCarron’s attempt to recuperate

murder most certainly had everything to do with autism. Michael McCarron’s attempt to recuperate his granddaughter’s human-ness both exposes and reconfirms the taken-for-granted logic that a murder motivated by autism (Jason’s murder, for example) is a murder that, at least in some sense, is understandable, condonable, necessary, even.

Michael McCarron’s rationalisation was echoed in the courts and in the papers: Karen McCarron’s act of violence was recognised as unjustifiably taking life. The lethal violence inflicted on Katie was (popularly and legally) judged to be a non-vital or ‘murderous’ violence: violence that was enacted in the name of death and not life. While Dawes was framed and so understood as justifiably performing the vital act of releasing herself and an ‘almost-dead’ child from autism’s morbid grip,

performing the vital act of releasing herself and an ‘almost-dead’ child from autism’s morbid grip, McCarron was framed and so understood as unjustifiably taking the life of an ‘almost-living’ child. Daniela Dawes was granted a non-custodial murder sentence; Karen McCarron was sentenced to life in prison. While I do not want to make the claim that more imprisonment is the necessary ‘good’ here, the glaring differences in the sentencing, however, demonstrate the very salient detail that when

the glaring differences in the sentencing, however, demonstrate the very salient detail that when bodies are marked as outside of the vital limits of the human, they move, simultaneously, outside the bounds of the law. What the murder trials and the media responses that surrounded them demonstrate – and what the case of Katie McCarron makes very explicit – is the material danger of a global and globalising culture of puzzling threats, red flags and global epidemics. A culture that understands

globalising culture of puzzling threats, red flags and global epidemics. A culture that understands itself to be living with autism and that wishes to – and works to – live without it. The dominant ways that we are, as a culture, orienting to autism by fighting it, battling it, hating it, waging a war against it, and by working to eliminate it, require us to think of autism, not as itself a way of living, but as that which must be ‘lived with’. In this culture, individual people and, indeed,

of living, but as that which must be ‘lived with’. In this culture, individual people and, indeed, whole populations are being split cleanly in two – part ‘living’ people and part ‘life draining’ pathology. A part to cultivate and a part to eliminate. Such a parsing up of life and non-life, people and pathologies, promises that there, in fact, can be life without autism, that if autism is eliminated or cured, someone without autism remains.

Of course, such a promise is both a false one and a dangerous one. And, while I’m in no way suggesting that cultural understandings and orientations forced McCarron’s or Dawes’ hand in killing their children, such understandings and orientations certainly provide the necessary conditions that continue to make this kind of violence possible and even – for those of us monitoring the headlines – normal. Born of our culture, the violence enacted against Katie and Jason (and the great many other

normal. Born of our culture, the violence enacted against Katie and Jason (and the great many other disabled people subjected to individual and systemic acts of violence) is a cultural problem. In the words of Michalko, disability violence is therefore ‘a problem for all of us’.

CONCLUSION Discourse is material. The everyday ways we collectively talk and think about autism are involved in the making of the meaning of people. Dominant assumptions and articulations about the quality and character of autistic lives teach us about what autism is and can be and govern the terms of our collective and individual responses to autism. We are currently living in the context of a (Western/ising, neoliberal) culture that is increasingly engaged in the process of organising

of a (Western/ising, neoliberal) culture that is increasingly engaged in the process of organising various non-normative thoughts, behaviours, responses, movements and affects into graded pathological spectrums anchored by oppositional poles of life and death. In this context, autism is discursively framed as some ‘thing’ separate from the fully living human/person: some ‘thing’ to be ‘fought’, ‘battled’, ‘hated’, waged war on. Autism, our culture tells us, must be eliminated in the hopes of

‘battled’, ‘hated’, waged war on. Autism, our culture tells us, must be eliminated in the hopes of recuperating the presumed goodness/rightness of normative life. Such a parsing up of life and non-life, people and pathologies, promises that if autism is eliminated, someone without autism will remain. As is painfully evident throughout this chapter, such a promise is as false as it is dangerous. Autism, here, is not some a priori thing-in-the-world but is, rather, an interpretive device used to

here, is not some a priori thing-in-the-world but is, rather, an interpretive device used to make sense of the bodies of actual people. As discourse inevitably marks the body and gives it shape and possibility, ‘person’ and ‘autism’ cannot be separated in any easy or straightforward way. Katie and Jason were not ‘people living with autism’ but living autistic people – fighting their autism meant fighting them; hating their autism was hating them; killing their autism, killed them. In attending

fighting them; hating their autism was hating them; killing their autism, killed them. In attending to some of the dominant discourses of autism that circulate in and through our culture and our lives, and by exposing the underlying logics that give these stories shape and coherence, it is my hope that this chapter has offered a means for further understanding – and further contesting – the ways autism violence is being normalised as reasonable and even as necessary.

INTRODUCTION It is now 20 years since the Salamanca Statement made the inclusion of children1 with ‘Special Educational Needs’ (SEN)2 in mainstream schools3 a national commitment for the 94 Governments who adopted it. However, the development of inclusive learning environments is still experienced by many schools as a challenge. Academics have provided models of inclusive practice for schools, such as the Index for Inclusion, but there is clearly a need for academics to offer further support.

as the Index for Inclusion, but there is clearly a need for academics to offer further support. Some argue that academics should not be prescriptive and dictate how schools should form themselves, that real change can only come when it is teachers rather than academics who decide how inclusion should be enabled within their schools. But, like the writer faced with an empty page, the act of imagining can sometimes feel too overwhelming a place to start. It can be helpful therefore to begin with

can sometimes feel too overwhelming a place to start. It can be helpful therefore to begin with a suggestion that can be reflected upon, critiqued, personalised and then developed. In this chapter I offer a model of inclusive practice through a critical analysis of one significant element within the inclusion process, the practice of diagnosis and labelling. I hope that this model will help the reader to employ a ‘sociological imagination’. This requires the reader to step away from the

the reader to employ a ‘sociological imagination’. This requires the reader to step away from the habitual understandings of the purpose and value of diagnostic labels that he/she may have assimilated and to reflect on the other possible meanings and impacts of these.

1 The term ‘children’ is used here for ease of reading. It is intended to also refer to young people up to the age of 18 years. In England this is currently when the period of compulsory education ends.

2 The term ‘Special Educational Needs’ (SEN) is the legal category assigned to children in England who are assessed as having difficulties with learning. SEN can also include perceived difficulties with behaviour, socialisation and physical impairments. With the Children and Families Act 2014 the category has been renamed as Special Educational Needs and Disability (SEND).

3 The term used in England for any school that is not a special school or an independent school. An independent school is one that is not dependent upon national or local government for funding.

Diagnosis and the attachment of labels to children have concerned me for some years. I was a teacher in England of children with SEND for fifteen years before I became a university-based academic with a specialism in ‘autism’. Whilst studying for my Doctorate in Education in the early 2000s I encountered for the first time the social model of disability (defined below). This resulted in me then questioning many of the canons of special education that I had previously accepted without

me then questioning many of the canons of special education that I had previously accepted without interrogation or challenge. The idea that diagnosis and labelling is always in a child’s best interests was one such canon. For seventeen years now as an academic, I have worked closely with teachers and parents and carers and people who identify with the labels of autism as students on academic courses, conferences and workshops, within Local Authority Strategy Groups (UK local governing bodies)

conferences and workshops, within Local Authority Strategy Groups (UK local governing bodies) and as a school governor. In doing so I have encouraged students to adopt a more critical engagement with labels, to interrogate their function, value and impact. My experience of this, however, is that students are reluctant initially to give up the meanings of labels that they are accustomed to. For some students an identity has been created around a label or as parents they have fought hard to

some students an identity has been created around a label or as parents they have fought hard to secure a diagnosis for their child and so have invested heavily in this being an enabling act. Others tell me that labels are essential as they are the key to resources or that as practitioners they have to work within legal and professional requirements and labels are positioned as a necessary element of these. Labels certainly seem entrenched in the minds of many of my students as essential to the

of these. Labels certainly seem entrenched in the minds of many of my students as essential to the enablement of children with SEND. Later in this chapter I explore further why this reluctance to let go of labels might occur. My own concerns with labels actually began many years before I began my doctorate, when I was a young teacher working in special education. I used to meet regularly for ‘last orders’4 with a group of teacher friends. At the start of the new school year I would ask my

‘last orders’4 with a group of teacher friends. At the start of the new school year I would ask my friends what their new pupils were like. Those working in mainstream schools would respond with, ‘I’ve got Myrth, she’s a real character, very funny’ and, ‘Finn, he’s very quiet, gentle, seems a really sweet kid.’ But when I asked my friends who worked in special schools5 they usually replied something like, ‘I’ve got one with Angel Syndrome, two Fragile X, two Down’s and two with Autism.’ At the

like, ‘I’ve got one with Angel Syndrome, two Fragile X, two Down’s and two with Autism.’ At the time this troubled me, not because my friends used the labels in this way, but because I did not. I used to think of my pupils by name first, their personalities second and their abilities and challenges third. I often struggled to remember their diagnosis. I worried that my lack of focus on labels was a failing for a special schoolteacher. Since then, however, labels have come to trouble me for

was a failing for a special schoolteacher. Since then, however, labels have come to trouble me for different reasons. Or perhaps for the same reasons but now as an academic I can situate my felt, instinctive unease with labels within a theoretical context. I now have a conscious understanding of why they are problematic and so I’m able to resist them from a differently informed position.

4 A tradition in England of meeting in the pub for a drink before service ended at 11pm.

5 Those schools designated exclusively for disabled children.  In this chapter I articulate that position through an analysis of the impact that the processes of diagnosis and labelling have on the educational and life experiences of disabled children. The chapter begins with an historical account of the inception of labelling through which I encourage the reader to identify and reflect on the political, economic and cultural contexts from which labels emerged and in which they now operate.

political, economic and cultural contexts from which labels emerged and in which they now operate. Through this historical review labels are exposed as tools of capitalism that are used to segregate, control and expel to the margins of community those children who are positioned as economic burdens on the state. Labels are exposed as agents of ‘disablism’6 and not the essential enablers of children that many teachers assume them to be. It is important to me that my own academic writing has a

that many teachers assume them to be. It is important to me that my own academic writing has a clear link to the development of educational practice and that it contributes to the establishment of more equitable and enabling practices in schools for all pupils. To this end the chapter concludes with suggestions as to how teachers, parents and carers and/or disabled people might accommodate labels to minimise their disabling effects whilst not exposing themselves, where relevant, to professional

to minimise their disabling effects whilst not exposing themselves, where relevant, to professional risk. A reader might question whether labels should be the highest priority on the inclusion agenda but the ways in which we conceptualise children govern every aspect of how we engage with them. Within the chapter I illustrate some of these issues with examples from a research study that I conducted for my Doctorate in Education between 2004 and 2006. This study focused on the experiences of

for my Doctorate in Education between 2004 and 2006. This study focused on the experiences of three families who were at different stages of negotiating the process of the diagnosis of autism in relation to their children. Marie and John’s son Sam was three years old; Ann and Mark’s son Ben was four; and Todd, the son of Rachel and Bob, was six years old. I interviewed the parents at regular intervals for a year in order to identify and understand what the process of diagnosis meant to them.

for a year in order to identify and understand what the process of diagnosis meant to them. Labels carry with them their own set of social values and expectations. The families in this study were negotiating those imbued within the label of ‘autism’. However, many of the same or similar disabling effects of that label will also apply to other labels that are associated with special educational needs.

6 Disablism is defined by Scope (an organisation based in England and Wales that campaigns for the rights of disabled people) as ‘discriminatory, oppressive or abusive behaviour arising from the belief that disabled people are inferior to others’.

DIAGNOSIS AND LABELLING Barnes argues that, ‘the identification and labelling of impairment as socially deviant is subject to ideological, political and cultural forces’. In England, the practice of diagnosis and labelling gained momentum with the rise of industrialisation that began in the eighteenth century. People migrated from their rural communities to the cities, giving rise to concerns about population control and the need to protect the quality of the workforce. The capitalist drive

about population control and the need to protect the quality of the workforce. The capitalist drive for profit valued only those who could make an economic contribution through industrial hard labour. People became transformed into workers whose worth to society was mainly dependent upon their physical and/or mental capabilities. Those who were seen as incapable of this type of work were considered ‘a drain on the public purse’. People who were deemed to be ‘social deviants’, such as those with

‘a drain on the public purse’. People who were deemed to be ‘social deviants’, such as those with learning difficulties, mental health issues or criminal tendencies, were also claimed to be prodigious reproducers. This raised fears that these ‘non-productive deviants’ would take resources from those capable of work and become an unbearable financial burden on society. To be labelled in the eighteenth and nineteenth centuries as ‘the idiot’ child, later the ‘mentally defective’ or ‘feebleminded’

and nineteenth centuries as ‘the idiot’ child, later the ‘mentally defective’ or ‘feebleminded’ child, was therefore to be positioned as a ‘threatening apparition’ who needed to be regulated, controlled and prevented from reproduction. Systems of identification and categorisation started to develop as the authorities sought to segregate these groups. They were to be kept apart and prevented from breeding in the hope that their genetic line would become extinguished. These ‘defective biologies’

breeding in the hope that their genetic line would become extinguished. These ‘defective biologies’ were to be kept from ‘contaminating’ the workforce as a ‘productivist culture had no place for impaired labour power’. It can be seen therefore that the practices of diagnosis and labelling have their roots in the protection of the political and economic stability of the state rather than in the welfare of disabled children. Labels only came into being to protect the interests of the powerful.

welfare of disabled children. Labels only came into being to protect the interests of the powerful. Kliewer and Biklen, writing about American educational policy at the start of the twentieth century and using the terminology of that period, observe that, ‘eugenically derived special education was most concerned with controlling morons through segregation’. The use of the term ‘moron’ is now startlingly offensive and so highlights the objectifying, dehumanising and lethal nature of labels.

startlingly offensive and so highlights the objectifying, dehumanising and lethal nature of labels. Although such conceptualisations of disabled children may now seem extreme, in fact little has changed in the twenty-first century: disabled children continue to be positioned as an economic burden on the state and in consequence are subject to marginalisation and expulsion. Ball identifies the capitalist drivers in today’s schools as competition between schools articulated through league tables

drivers in today’s schools as competition between schools articulated through league tables based on output indicators (5+ GCSE A*–C grades). The ranking of schools only according to level of academic outputs has produced an ‘economy of student worth’. Schools are judged by results and perceived poor performance can even result in a compulsory take-over by another school/organisation. The stakes are extremely high and so it is little surprise that some schools will work to expel children with

are extremely high and so it is little surprise that some schools will work to expel children with labels that promise ‘poor performance’. Even today the labelled child is still seen as a threat to the productive future of their communities.

THE DISABLING EFFECTS OF LABELS Gillman, Heyman and Swain identify three of the most significant ways in which labels can marginalise and exclude children. The first of these is that professionals and others use labels to justify intrusive, sometimes painful and often costly interventions that are usually focused upon making disabled children as ‘normal’ as possible. The pathologisation of children as abnormal or disordered gives rise to a plethora of agencies and services whose very existence

as abnormal or disordered gives rise to a plethora of agencies and services whose very existence is dependent upon the maintenance of the notion of developmental conditions that are in need of remediation or cure. Autism-related ‘specialist’ approaches, interventions and cures are marketed aggressively. Many of their claims are unsubstantiated by research but are made attractive to parents who are made desperate through operating within what Waltz terms a ‘cure-or-catastrophe model of autism’

made desperate through operating within what Waltz terms a ‘cure-or-catastrophe model of autism’ in which having a child with autism is positioned as a tragic and costly burden. Paradoxically, disabled children are viewed as both a financial burden and a commodity that can be exploited for profit. In the United Kingdom between 2007 and 2011, £21 million was spent on autism research, with the majority of projects funded focusing upon neural and cognitive systems, genetics and other risk factors

of projects funded focusing upon neural and cognitive systems, genetics and other risk factors with the aim of either reducing symptoms or preventing the existence of children with autism. A comparatively small amount of research funding was focused upon addressing the practical requirements of children with autism and their families through improving support services. Labels sell and autism is big business.

The second exclusionary act of labels is the disempowerment of parents and carers and non-medical professionals. The mystique of medical terminology that surrounds a diagnosis creates an authority for the assignment to children of the devalued status of ‘deviant’, ‘disordered’, ‘different’ or ‘special’. These are children whom only doctors can understand and make better. Parents and non-medical practitioners become hesitant and uncertain as to whether they are able support such a child without

become hesitant and uncertain as to whether they are able support such a child without the ‘expert’ knowledge of the particular ‘syndrome’ that medical professionals assert they have. The system of labelling leads therefore to ‘the marginalisation, disqualification and rejection of knowledge and expertise of individuals and their family carers’. Marie, a participant in my own study, illustrates this process. In my early visits to Marie she told me of the games and learning activities that she

this process. In my early visits to Marie she told me of the games and learning activities that she and Sam, her son, did together and of the pleasure that they both received from this. One of my visits followed shortly after the suggestions had been made by ‘expert’ professionals that Sam might ‘have’ autism and that the parents should accept the label in order to access the specialist help that a child with autism would need. I could see that Marie was upset and I asked her whether anything

a child with autism would need. I could see that Marie was upset and I asked her whether anything in particular was causing her distress. Marie explained that now that Sam had been given the diagnosis of autism she and Sam’s father, John, ‘don’t know what to teach him, how to teach him’. The label and the medical mystique that surrounds it are so powerful that these overrode the three years of experience that Marie and John had in providing expert learning for their son.

A third effect, articulated by Gillman and colleagues, is that labels can lower the expectations of others. This association of levels of skill with a particular ‘impairment’ label is termed by Goodley as a ‘relational construction’. This phrase captures how behaviour is interpreted in relation to diagnostic labels and how some labels, such as ‘learning difficulties’, carry with them lower expectations of potential educational and life success. In my study Ben’s father, Mark, illustrates this

of potential educational and life success. In my study Ben’s father, Mark, illustrates this process when he describes his puzzlement that a teacher who had previously engaged very effectively with Ben suddenly stopped spending time with him. This deeply disturbed Mark and so he asked the teacher about this change in behaviour. The teacher explained that she had been visited by the autism specialist support team7 who had informed her that Ben had autism. Mark perceived the teacher’s

specialist support team7 who had informed her that Ben had autism. Mark perceived the teacher’s understanding of autism to be that children like that want to be left alone. This change in the teacher’s behaviour was deeply upsetting for Mark who stated, ‘I could really see the difference in her, in the way she talked…she is never going to see Ben as a normal child anymore…she (the teacher) is going to stamp Ben as autistic and in her words autism means “Oh, they’re just wandering around in

going to stamp Ben as autistic and in her words autism means “Oh, they’re just wandering around in their own world”’. So here behaviours associated with autism in textbooks superseded the teacher’s expert knowledge of the child that had been established through her own relationship with him. The power of the label was stronger than the teacher’s own experience and the teacher no longer held the same aspirations and expectations for the child’s learning that she had prior to him receiving it.

same aspirations and expectations for the child’s learning that she had prior to him receiving it. The label became all that could be seen of the child and academic success was not something that this teacher associated with autism. A critical element of inclusion is ‘how disabled children are valued as learners by non-disabled people’. In this example this child was no longer attributed the same potential for learning.

7 An autism specialist support team is a group of people within education services who have been assigned the status of ‘expert’ in relation to autism. How they operate varies but usually they will work with families and schools to develop ‘appropriate’ educational provision for children with autism.

Green and colleagues also refer to this process of value reduction when they state that, ‘labelling involves not only the perception that someone is different, but also the assignment of social import to that difference’. Marie, in my study, reflects on this when she states that, ‘any label will limit what you do and how people look at you’. For Marie, giving someone a label is ‘the most damaging thing that you could ever do… It could potentially ruin somebody’s life’. As the earlier example

thing that you could ever do… It could potentially ruin somebody’s life’. As the earlier example with Ben illustrates, the introduction of a label such as ‘autism’ into the child–teacher relationship can create a ‘social awkwardness that interferes with ordinary social interaction’. The effect of labels negating any personal characteristics that a child or young person may have is referred to by Shakespeare as ‘identity spread’: ‘The impairment label becomes the most prominent and relevant

by Shakespeare as ‘identity spread’: ‘The impairment label becomes the most prominent and relevant feature of their lives, dominating interactions.’ The label becomes the totality of the child’s social identity. The focus is no longer on the child but on a collection of specific impairment behaviours and characteristics that are associated with the particular label. It is these that school staff feel must be constrained and changed and in doing so appreciation of and respect for the child’s

feel must be constrained and changed and in doing so appreciation of and respect for the child’s personhood may be lost. Children stop having a special need and become the child who is a special need, as in, ‘Is your brother a special need?’. Goodley, reflecting upon his own life as a non-labelled man compared with the labelled lives of the participants in his research, records some of the impacts that labels can bring to a life: ‘people being put in a house with strangers, not being asked

that labels can bring to a life: ‘people being put in a house with strangers, not being asked where they would like to live, prevented from going out because others think they are incapable and of archaic treatments in institutions’. Sen also critiques these attacks on individual freedom that Sen argues result from ‘the terrible burden of narrowly defined identities’. The effect of the imposition of these labelled identities on children is that their freedoms to become who they want to be and

of these labelled identities on children is that their freedoms to become who they want to be and to live in ways of their choosing are curtailed.

In 2001 UNESCO warned how labels work against the inclusion agenda by positioning the problem of learning as a ‘within child’ issue, thereby excluding consideration of problems with teaching: ‘Indeed their (disabled children’s) lack of learning or slow development was put down to their impairment rather than to the restrictions they experienced in interacting with others and to participating in different environments’. This conceptualisation of particular ways of being as necessarily a

in different environments’. This conceptualisation of particular ways of being as necessarily a ‘problem’ and one that is situated within the child is sometimes referred to as the ‘individual model of disability’. Within this model it is the child who is expected to change or be changed in order to become as ‘normal’ as possible. An alternative model is the ‘social model of disability’. This means of understanding disability holds that it is not people’s bodies or minds that prevent them from

of understanding disability holds that it is not people’s bodies or minds that prevent them from engaging fully with society but discrimination, prejudice and the assemblage of disabling barriers within the economic, social and cultural environments. For proponents of the social model it is society that is to blame for denying disabled people equality through a variety of practices. These include denying access to employment and thereby making disabled people dependent on charity, preventing

denying access to employment and thereby making disabled people dependent on charity, preventing physical access to social spaces, not recognising non-spoken systems of communication and segregation through specialised schooling. It is not the impairment that excludes the person from taking part in society but these restrictions imposed by society. Edward Timpson, who at the time of writing was Minister for Children and Families in the British Government, highlighted one of the dangers of

was Minister for Children and Families in the British Government, highlighted one of the dangers of labels through suggesting that these can sometimes provide teachers with a scapegoat to justify a pupil’s lack of learning. In a ‘within the individual’ model of disability, problems with learning are often explained away as the result of the child’s impairment, thereby excusing teachers from examination of their own practice. However, some disabled pupils offer an alternative perspective on why

of their own practice. However, some disabled pupils offer an alternative perspective on why they might experience problems with learning. For them the barriers to learning could be ‘boring lessons; teachers not understanding their needs; other pupils messing about; and a feeling that no one really expects them to do well’. Timpson promises that the revised Code of Practice for Special Educational Needs and Disability (SEND)8 (which from September 2014 has directed schools on how to respond to

Needs and Disability (SEND)8 (which from September 2014 has directed schools on how to respond to pupils with SEND, ‘will be more challenging in urging schools to improve the quality of teaching for all pupils – rather than just label “difficult” pupils as having SEN’. This shift in focus away from labels would seem a welcome one, but concerns have been raised about whether some children with SEND will be made more vulnerable by the new Code. The suspicion remains that the loss of a label will

will be made more vulnerable by the new Code. The suspicion remains that the loss of a label will also result in the loss of entitlement to additional services.

8 The Code of Practice is governmental guidance for schools in England on educational provision for children and young people with special educational needs and disabilities aged 0–25 years.

In fact it is unlikely that the new Code of Practice will do much to reduce the reliance on labels as these have a history of being difficult to disregard, and labels such as autism, dyslexia, dyscalculia, dyspraxia, deaf, deafblind are still referred to within the Code. ‘People first’ language has for many years attempted to counter the effect of label domination by emphasising the personhood of the child before the label, for example ‘child with autism’ rather than ‘autistic child’. Even so,

the child before the label, for example ‘child with autism’ rather than ‘autistic child’. Even so, the use of ‘with’ as in ‘a child with social and behavioural difficulties’ still encourages people to locate the ‘problem’ of learning or behaviour within the child and his/her identified ‘condition’. To keep practitioners and carers mindful of this, Tobbell and Lawthom argue for the adoption by services of terms such as ‘child labelled as having social and emotional behavioural difficulties’.

services of terms such as ‘child labelled as having social and emotional behavioural difficulties’. Tobbell and Lawthom argue that this may help to remind staff of the socially constructed nature of a ‘diagnosis’ and the need to always examine the context that surrounds the child, including the relationships contained within it. The disabled people’s movement in Britain also emphasises the socially constructed nature of disability through a careful use of terminology. To make explicit that

constructed nature of disability through a careful use of terminology. To make explicit that disability is something that is done to you and not something that is an inherent part of you, the disabled people’s movement has rejected terms such as ‘people with a disability’ or ‘people with learning disabilities’ in favour of ‘disabled people’. This term is useful in the fight against labels as unlike ‘people first’ language or the use of ‘person with…’ there is no reference made to specific

unlike ‘people first’ language or the use of ‘person with…’ there is no reference made to specific impairments. Unfortunately scant attention seems to be made to this important distinction by policy makers and service providers who continue to support a language of people first.

Sinclair also rejects people first terminology but for different reasons. For Sinclair, being autistic is fundamental to personhood as autism is something that cannot be separated from the person. Brown argues that the identity of an autistic person is only valued when it is recognised through the use of the term ‘autistic’. For Brown, when people first language is used this demeans and devalues the state of being autistic. Hughes uses the concept of ‘biological citizenship’ to capture how

the state of being autistic. Hughes uses the concept of ‘biological citizenship’ to capture how people can build a sense of identity around their label in this way so that it becomes critical to

their sense of who they are and where they belong. Brownlow and O’Dell note a tension here, however. Using the example of autism they state that ‘biomedical understandings enable the positioning of difference in a positive way, through the potential validation of an autistic identity in a positive manner; however, the counterposition is that of individuals being determined by a reductionist, biologised discourse’. Such academic tensions are problematic for individuals who are renegotiating

biologised discourse’. Such academic tensions are problematic for individuals who are renegotiating their identity through the diagnostic process. Ortega observes that debate and uncertainty around the constructed nature of ‘impairment’ can cause stress and anxiety to individuals whose very identity then seems to be contested. The label of Asperger Syndrome is a useful example of the problematic nature of the social construction of impairment identity. In 1981 Wing effectively created the

nature of the social construction of impairment identity. In 1981 Wing effectively created the diagnosis and therefore the identity, only for it then to be delegitimised as an identity with the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). However, in my own experience, as Ortega argues, students who identify with the labels of autism are sometimes challenged by a view of autism as a social construct, a concept that has been negotiated and agreed by the

by a view of autism as a social construct, a concept that has been negotiated and agreed by the medical community as opposed to a definite physical ‘thing’ that they ‘have’. Nonetheless, even whilst embracing an identity around a label, it is critical to remain mindful of and guarded against its power to act as a tool of othering, marginalisation, and even expulsion.

LABELS AS TOOLS OF EXPULSION Sassen is concerned with the macro-forces within economic, political and social structures that act to marginalise, exclude and even expel members from their own communities. Sassen refers to ‘zones of expulsion’ to describe the spaces on the ‘systemic edge’ of communities to which those who are not useful to the capitalist project are effectively banished. Sassen describes the forces that enable these processes of expulsion as ‘subterranean trends’. Although these

the forces that enable these processes of expulsion as ‘subterranean trends’. Although these are manifold, all-powerful and cross national boundaries, they are rarely made explicit. They operate insidiously and for the most part unseen. Sassen’s work has not yet been applied to micro-environments such as schools but here I argue that zones of expulsion do exist within the education system and that labels are one of the tools through which these are enabled. The ‘othering’ of children through

labels are one of the tools through which these are enabled. The ‘othering’ of children through labels, the construction of them as ‘different’ and ‘special’ and therefore requiring special provision or staff with special skills or special modes of transport to get to school, all work to justify the exclusion of children from mainstream spaces within schools. Here they will not interfere with the academic success of the high achievers who are the main providers of ‘positive’ results for the

the academic success of the high achievers who are the main providers of ‘positive’ results for the schools. Children who cannot contribute through high academic achievement become problems rather than children experiencing problems. Sometimes exclusion to the margins of the school community takes on the even more extreme form of total expulsion from the school community.

The English Department for Education (DfE) statistics for the number of permanent and fixed-term exclusions from schools in England in the academic year 2012/13 reveal that children with the label of special educational needs are far more likely to receive a permanent or fixed-term exclusion than children without the label. Children with statements of special educational needs are around six times more likely to receive a permanent exclusion than pupils with no SEND and around nine times more

more likely to receive a permanent exclusion than pupils with no SEND and around nine times more likely to receive a fixed-period exclusion than children without any identification of SEND. For children with the label of SEND but who do not have a statement these figures rise further in relation to permanent exclusions, with these pupils being ten times more likely to receive one of these than children without this label. Persistent disruptive behaviour is the most common reason given for

children without this label. Persistent disruptive behaviour is the most common reason given for exclusion. Tobbell and Lawthom using the example of ‘emotional, social and behavioural difficulties’ argue that such exclusions might result from the label itself. If teachers understand difficulties with learning or behaviour as a manifestation of a condition within the child then they might feel powerless to change this through teaching. They may come to see the child as unable to learn and so no

to change this through teaching. They may come to see the child as unable to learn and so no longer as the responsibility of the school. Sassen is interested in identifying the ‘systemic edge’, the point where the included become the excluded, as it is here that subterranean trends can be revealed. This review of the impact of labels on the school experience of children and their families identified earlier one such trend as the capitalist performativity agenda of schools. The governmental

earlier one such trend as the capitalist performativity agenda of schools. The governmental policy known as the ‘standards agenda’ is focused upon raising the attainment of pupils in schools. Schools are compared with each other and ranked according to pupils’ results in predominantly literacy, numeracy and science. The survival of schools and therefore teachers’ jobs is dependent upon achieving high scores for pupil attainment. One result of the pressure to perform well in the rankings is

high scores for pupil attainment. One result of the pressure to perform well in the rankings is that, ‘low-attaining students, students who demand high levels of attention and resource and students who are not seen to conform to school and classroom behavioural norms become unattractive to many schools’. The entry of such pupils into schools may therefore be resisted overtly or through more subtle and often harder to resist means such as suggesting that the school is not in the best interests

and often harder to resist means such as suggesting that the school is not in the best interests of the child. Pupils already attending school may find themselves excluded. Marginalisation may also take less direct forms. Schools may decide, for example, not ‘to “invest” in work with children with special needs where the margins for improved performance are limited’. The ‘terror of performativity’ is such that it becomes transformative in its effects on teachers. Even those who embrace the

is such that it becomes transformative in its effects on teachers. Even those who embrace the inclusion agenda can find themselves supressing or compromising their principles when faced with the prospect of not meeting the expected standards. Some teachers may no longer have the personal resources to act as advocates and enablers for pupils with SEND.

THE PERCEIVED VALUE OF LABELS The section above establishes the problematic and contentious nature of labels. My experience of working with teachers and parents and carers, however, is that they are very reluctant to surrender the labels and to move away from using them. I trust in the commitment of teachers as well as parents and carers to do what they feel is best for their children and so I recognise that for them the labels must be perceived as having some use and value. Labels are imbued

that for them the labels must be perceived as having some use and value. Labels are imbued with the status and power of the medical profession. Doctors have traditionally enjoyed high social status and a pursuant exclusive authority to assign the status of the ‘impaired’ or ‘disabled’ to individuals. Kuipers argues that medical knowledge has traditionally been accepted as the ‘unassailable “God’s truth”’, which makes medical claims difficult to challenge. Jodrell suggests another reason for

truth”’, which makes medical claims difficult to challenge. Jodrell suggests another reason for support for labels, as claims can be found within the research literature that labels increase knowledge and understanding of individual needs and so provide a service for children. This view is reflected in the UNESCO inclusion guidance for teachers in its representation of different impairment groups and advice on how to teach ‘them’. This guidance, however, appears conflicted on the value of

and advice on how to teach ‘them’. This guidance, however, appears conflicted on the value of labels. Whilst offering a challenge to labels through an emphasis on the uniqueness and individuality of all children, such as stating, ‘No two children are alike’, the document then goes on to identify the shared characteristics of children within their different impairment groups and presents a number of strategies that this ‘type’ of child will respond to. So the message for teachers remains that

of strategies that this ‘type’ of child will respond to. So the message for teachers remains that ‘these’ children are members of a different group and require special provision.

Gillman and colleagues also suggest further reasons for why people might seek out labels for themselves or their dependents. Labels can provide a means of explaining symptoms of ‘illness’ or ‘abnormal’ development in order to relieve ‘the stress or ambiguity of the unknown’. A label can be an explanatory device that can be useful to family carers in their dealings with the general public and an official diagnosis can be a powerful convincer that relieves parents of giving further explanation

official diagnosis can be a powerful convincer that relieves parents of giving further explanation for their child’s behaviour to others. There is a hierarchy of impairments with some labels felt to be more stigmatising than others. This can then lead to a search for a more favourable label. Avdi and colleagues argue that parents also seek diagnosis as ‘official acknowledgement of the “reality” of the problem’, evidence to demonstrate that their concerns were legitimate. For some parents a

of the problem’, evidence to demonstrate that their concerns were legitimate. For some parents a label comes as a relief because the condition or syndrome is responsible for the child’s developmental ‘problems’ and not their parenting. However, this issue could be addressed without resorting to labels. The doctor could present the results of an assessment as, ‘We have found that Mary has strengths in these areas and challenges in these others. Some children develop in this way; that is just how

in these areas and challenges in these others. Some children develop in this way; that is just how some children are. From what you tell us, Mary seems to learn best when…’ What some parents and carers say that they really want from an assessment of their child’s development is to recognise that whoever has carried it out has come to know their child, his/her personality, character, strengths and challenges and can support them as parents and carers with understanding why and how their child’s

challenges and can support them as parents and carers with understanding why and how their child’s profile might have developed in this way. This is what is critical to parents and carers rather than for their child to be made bureaucratically different and subsumed within a medical category. However, within the current system of educational provision a label is often the only means of access to specialist support and enhanced financial resources and so parents are compelled to seek it. This

specialist support and enhanced financial resources and so parents are compelled to seek it. This can lead to a bartering between parent or carer and professional where the parent or carer agrees to an unwanted label just to access required support: ‘…then we agreed the trade-off should be to get him statemented…’. The ability to access resources can therefore make a label a desirable commodity. Because of this Fox and Kim argue that some groups with ‘emerging disabilities’ are campaigning to

Because of this Fox and Kim argue that some groups with ‘emerging disabilities’ are campaigning to acquire a label, ‘hoping that medical acceptance will lead to greater social acceptance’ and to more timely and effective medical and social services.

DISRUPTING LABELS Labels have been established within this chapter as situated within and maintained by historical, political, cultural and economic forces. Halpin in writing about the position of nurses within autism assessment teams9 questions what power nurses can really have to disrupt disabling practices considering their standing within the medical hierarchy. The same question can be asked here of teachers as to whether they really have the power to refuse labels when these are so

asked here of teachers as to whether they really have the power to refuse labels when these are so embedded within the fabric of the educational system. In 1992 Giroux questioned the value of his earlier work that focused only on schools without taking account of the wider context because in doing so he ‘vastly underestimated both the structural and ideological constraints under which teachers labor’. Ball identifies some of these constraints on teachers when he states that, ‘the Conservative

Ball identifies some of these constraints on teachers when he states that, ‘the Conservative Governments of 1979–97 and Labour and Coalition Governments have all been keen to displace the participation of teacher associations, trade unions and local authorities from the policy process’ and that, ‘the daily lives of teachers and learners in school are driven more and more by the extrinsic demands of performance, competition and comparison, putting both under greater and greater stress’. Teachers

performance, competition and comparison, putting both under greater and greater stress’. Teachers would appear therefore to be under too many pressures already to take on the fight of refusing labels. Halpin found that the nurses in her study drew strength from their collective reflection and re-evaluation during the research process of what their profession means to them and the conditions in which they practise it. Through identifying the forces that worked against their professional ethics

they practise it. Through identifying the forces that worked against their professional ethics these nurses found a new resolve for resistance. Giroux believes in the ability and intent of teachers to become critical pedagogues, to engage critically with theory and to use this to develop their practice. I hope that through this chapter enough of a challenge has been made to the imperious command of labels to enable teachers to come to know them differently. Once teachers come to regard labels

of labels to enable teachers to come to know them differently. Once teachers come to regard labels through a critical lens, thereby coming to know their true nature and purpose, then like Giroux I trust that teachers will be creative in resisting them, as best they can within the restraints of the performativity agenda. Goodley and Runswick-Cole suggest that many of us in our management of labels ‘use and refuse’ them. When the label can be made to serve a useful purpose for the child such as

‘use and refuse’ them. When the label can be made to serve a useful purpose for the child such as accessing resources then it is made use of. But if the label would restrict the life opportunities of a child then it is refused. Pupils may come into schools with labels and teachers may note and consider these as one small part of coming to know the child. These labels would then be put into storage. Rather than a school without labels it will be a school with labels filed away. If the label

Rather than a school without labels it will be a school with labels filed away. If the label serves an empowering purpose for a child or young person and is felt to be critical to their developing identity then, for that child, the label can be utilised. For many pupils, however, the only labels that teachers would use within the school would be their names.

9 An autism assessment team in England is usually a group of health practitioners who assess the development of children in relation to being assigned a diagnosis of autism.

Resistance to labelling is not a call for an abandonment of assessment. I support fully coming to know children, but as people and not as categories. It is vital that we come to know who children are, what they enjoy, fear, their hopes and aspirations for their future, their worries and concerns, what motivates them and what turns them away from learning. We need to find out what skills children have and which ones would be helpful for them to develop, to learn about which teaching methods

have and which ones would be helpful for them to develop, to learn about which teaching methods might best support this learning and how the environment needs to be structured to most enable this. Jordan and Jones attempted to modify the impact of labels by suggesting that they should be thought of as signposts,10 that they are not to become the identity of the child but would alert teachers to a range of impairment-relevant resources and teaching strategies. The problem with this approach is

a range of impairment-relevant resources and teaching strategies. The problem with this approach is that a signpost inevitably points a teacher towards a range of resources and teaching strategies that would help ‘a child like that’. Signposting does not enable the child to escape the othering impact of the label. Nor are signposts effective in directing the attention of teachers to children who do not have the particular label but would benefit from these same resources and strategies. Rather

do not have the particular label but would benefit from these same resources and strategies. Rather than think children with autism need this and children with Attention Deficit Hyperactive Disorder (ADHD) need another prescriptive set of provisions, teachers would serve pupils better if they could select from a toolbox of approaches, strategies and resources the ones that would most enable that particular child. Teachers will still need to know about and be able to use a full range of teaching

child. Teachers will still need to know about and be able to use a full range of teaching methods but they will rely on their knowledge of a child’s character and personality to use them and not his/her label. So in the school without labels the teacher might think, ‘Erin places her hands over her ears a lot when the class is all together. I know that some children can find noise particularly painful – I wonder if that is happening for her’ or, ‘Ned doesn’t seem to predict what will happen next

– I wonder if that is happening for her’ or, ‘Ned doesn’t seem to predict what will happen next in class and he gets upset when it is not what he is expecting. I know that some children find picture timetables useful. Perhaps that might help Ned.’

10 The recommendation that the label of autism be considered only as a signpost is attributed in this text to Richard Exley.

CONCLUSION Within this chapter I have argued that the practices of diagnosis and labelling emerged as a response to historical economic and social forces. These practices were intended to serve the interests of capitalism and to help control the perceived threat to political and economic order. They were not introduced to support and enable disabled children, contrary to the role of labels as perceived by many teachers and parents and carers. Some of the dangers of labels have been identified

by many teachers and parents and carers. Some of the dangers of labels have been identified and illustrated. Embedded within the individual model of disability, labels have been revealed as locating the ‘problems’ of development within the child or young person thereby removing any need for assessing and changing the impact of the social and educational environments. Labels promote the idea of the disabled child being the problem and that it is the child who needs to change to become more

of the disabled child being the problem and that it is the child who needs to change to become more ‘normal’. Rethinking this from a social model of disability perspective has been shown to shift the ‘problem’ from the child to the environment with an expectation that it is the school and the practice of teaching that needs to change. Labels have been positioned within this chapter as dehumanising attacks on personhood that expel children to the margins of their school community and even

attacks on personhood that expel children to the margins of their school community and even beyond. In the tradition of Critical Pedagogy, I have called upon teachers in schools to resist these effects by recognising and celebrating the individuality of children, responding to them as people with their own way of learning rather than as members of an impairment group who all are and learn the same. Teachers are also subject to political and cultural pressures that they may feel powerless to

same. Teachers are also subject to political and cultural pressures that they may feel powerless to overcome. Therefore I have argued for resistance, a using and refusing of the label, rather than total rejection as the most practical strategy for schools. Children will come into schools with labels already attached to them. These can be used for maximising access to resources but the disabling effects of these labels must also be recognised, discussed and addressed. Labels should be kept

effects of these labels must also be recognised, discussed and addressed. Labels should be kept within locked drawers, only to be removed in necessity, with care and the certainty that this is in the best interests of the child. We may not yet be ready for schools without labels but it is time for schools that recognise and resist their disabling effects.

INTRODUCTION The question this chapter will consider is: does the label of autism add anything at all to the approaches that services put together to help someone with an intellectual disability? The focus is on approaches which aim to help people by teaching them new ways of behaving and understanding their world and supporting them in everyday life – often called psychosocial/educational approaches. Intellectual Disability (ID) is commonly defined in terms of deficits in intellectual ability

Intellectual Disability (ID) is commonly defined in terms of deficits in intellectual ability and social functioning, which are present throughout the person’s life. For example, the World Health Organisation defined Intellectual Disability as: ‘a significantly reduced ability to understand new or complex information and to learn and apply new skills (impaired intelligence). This results in a reduced ability to cope independently (impaired social functioning), and begins before adulthood, with

ability to cope independently (impaired social functioning), and begins before adulthood, with a lasting effect on development’. Other present and past terms for Intellectual Disability include Intellectual Impairment, Learning Disability and Mental Retardation. Intellectual Disability itself is a socially constructed category, which covers people who have a wide range of features and disabilities. For example, the common criterion that a person’s Intelligence Quotient (IQ) should be two

For example, the common criterion that a person’s Intelligence Quotient (IQ) should be two standard deviations below the mean (i.e. IQ less than 70) is an arbitrary figure. It is now widely recognised that both intellectual ability and social functioning are multifactorial concepts, which cannot easily be defined by a single number, and that we should be more sophisticated in how we conceptualise them. However, there is a large body of research and experience relating to people with this label,

them. However, there is a large body of research and experience relating to people with this label, which has resulted in the development of specialist Intellectual Disability services with skills and knowledge in how to improve people’s lives. This chapter will investigate whether the autism label adds anything to our ability to help people with the ID label.

There is a strong association between the diagnosis of Autistic Spectrum Disorder and Intellectual Disability. For example, in their 2010 review paper, Emerson and Baines concluded, ‘we estimate that between 20% and 33% of adults known to Councils with Social Services Responsibilities as people with learning disabilities also have autism. Across England, this suggests that between 35,000 and 58,000 adults who are likely users of social care services have both learning disabilities and autism.

adults who are likely users of social care services have both learning disabilities and autism. The number of adults in the population who have both learning disabilities and autism (including those who do not use specialised social care services) is likely to be much higher’. It was estimated that 40–60 per cent of children diagnosed with autism also had an ID diagnosis. Because of this strong association, this chapter will primarily consider people labelled with Intellectual Disability (ID)

association, this chapter will primarily consider people labelled with Intellectual Disability (ID) and Autistic Spectrum Disorder (ASD), though similar questions about the treatment implications of an autism diagnosis can be asked for people with abilities in the ‘average’ range of intellectual ability. There are generally accepted concepts of diagnosed conditions:

*   A person shows signs and symptoms, which suggest a known condition. *   We do tests to confirm this. *   Once we are sure the person has the condition, we then can help them using tried and tested methods that work for those with the condition.

A lot of effort and energy is often put into determining whether a person merits a diagnosis of autism. Many resources are expended to provide highly trained teams of professionals to determine a diagnosis. There are many formal assessment tools, some requiring intensive training to master, for example the Diagnostic Interview for Social and Communication Disorders (DISCO). They aim to give a valid and reliable decision about whether a person is autistic, or not, and maybe which subdivision of

and reliable decision about whether a person is autistic, or not, and maybe which subdivision of the autism spectrum they inhabit. However, when it comes to devising programmes to help the person, this chapter will argue that the value of this diagnostic label seems questionable. It is argued that most suggested treatment approaches and programmes are applicable to anyone who has ID whether they have an ASD diagnosis or not. This chapter will consider whether it is therefore right and helpful

have an ASD diagnosis or not. This chapter will consider whether it is therefore right and helpful for clinicians to use precious resources on a diagnostic process when these resources could be better employed working therapeutically with people experiencing difficulties in their lives.

DOES THE DIAGNOSIS HIGHLIGHT SPECIFIC UNIQUE PROBLEMS FOR SOMEONE WITH ASD? Autism is widely characterised by the ‘triad of impairments’ first proposed by Wing and Gould. If this triad of impairments is the fundamental defining characteristic of people with autism, it might be thought that this would signpost services to help a person’s needs in a way that is specific to ASD.

People with autism are said to have difficulties of: *   Social communication (e.g. problems using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice)
*   Social interaction (e.g. problems in recognising and understanding other people’s feelings and managing their own)
*   Social imagination (e.g. problems in understanding and predicting other people’s intentions and behaviour and imagining situations outside their own routine).

The third element of the triad (difficulties of social imagination) is described differently in some accounts, for example as ‘restricted, stereotyped, repetitive behaviour’ by the World Health Organisation in the International Classification of Diseases, Tenth Edition. There are questions that can be raised about the triad of impairments. For example, do these elements of the triad always appear together, and are they confined to people with an ASD diagnosis? There is evidence that the answer

together, and are they confined to people with an ASD diagnosis? There is evidence that the answer to both these questions is ‘No’. For example, Happé and colleagues reported: ‘In our population-based studies, using data from over 3,000 twin pairs assessed between the ages of 7 and 9, we have found modest-to-low correlations between autistic-like behavioural traits in the three core areas’. They found that many of the children in their study showed just one of the triad of impairments, with 59

found that many of the children in their study showed just one of the triad of impairments, with 59 per cent of the children with social impairments only showing this one and not the other elements of the triad. Therefore it seems questionable whether the core deficits of autism are something people with the ASD label have in common. This has led to the development of the ‘fractionable autism triad theory’, as described by Brunsdon and Happé, which suggests that the three features of the autism

theory’, as described by Brunsdon and Happé, which suggests that the three features of the autism triad have different genetic, environmental and cognitive origins, and may occur separately in different individuals.

Let us now look at each of these defining characteristics of autism, and consider whether they are also present in the wider group of people with ID. The first two elements of the triad, social communication and social interaction, are issues that have long been known to be problematic for people with ID. However, the area of social functioning is complex. Cook and Oliver carried out a wide review of research on defining and measuring sociability in children with ID. Overall they conclude that

of research on defining and measuring sociability in children with ID. Overall they conclude that there is a substantial body of research indicating that compromised social functioning for individuals with ID has far-reaching implications for their quality of life. However, they suggested that there is currently a lack of agreement on key concepts in the area. They proposed four constructs of sociability: social cognition, social skills, social behaviour and social competence. Social cognition

social cognition, social skills, social behaviour and social competence. Social cognition includes the abilities to read and interpret verbal and non-verbal social cues, knowledge about social behaviours and their consequences, and the ability to make accurate attributions of the other person’s mental state. People with ID have been shown to have difficulties in this area. For example, Rojahn, Lederer and Tassé reviewed research which looked at people’s abilities to recognise facial

Rojahn, Lederer and Tassé reviewed research which looked at people’s abilities to recognise facial expressions. They concluded that compared with non-ID controls, subjects with ID had difficulty recognising emotion and this disability is more prevalent the lower the person’s level of intellectual ability. Social skills is described by Cook and Oliver as a very broad area and they suggest that it refers to socially acceptable learned behaviours that people exhibit in specific situations in order

to socially acceptable learned behaviours that people exhibit in specific situations in order to perform competently on social tasks. Many studies have shown social skills deficits for children and adults with ID. For example, Agaliotis and Kalyva found that children with ID made fewer non-verbal initiations of social interactions than matched non-disabled peers. In a different example Pina and colleagues compared the performance of children with ID with non-disabled peers on a social stories

colleagues compared the performance of children with ID with non-disabled peers on a social stories task. The task asked the children to choose the best resolution to socially difficult situations. Children with ID were more likely to choose what they termed as ‘dysfunctional’ strategies (either aggressive or passive) than their controls. Social behaviour is also a broad concept on which Cook and Oliver found no agreement in the literature. There are so many different ways people behave

and Oliver found no agreement in the literature. There are so many different ways people behave socially, for example cooperation, altruism, friendship, and assertiveness, that it is not possible to give one overall definition. Social competence is another broad term referring to the ability to integrate thinking feeling and behaviour to achieve social tasks and outcomes valued in society. It includes elements of social skills and social behaviours. An indicator of how people with ID have

includes elements of social skills and social behaviours. An indicator of how people with ID have difficulties with social competence is the widespread finding that they are less likely to develop friendships and more likely to experience loneliness than non-disabled people. For example, in their review of social inclusion and community participation of individuals with ID, Amado and colleagues report that people with ID have fewer friends than others and those considered to be friends are

report that people with ID have fewer friends than others and those considered to be friends are likely to be family members or paid staff. So, while social communication and social interaction are broad concepts, we can see that as well as individuals with an ASD diagnosis, people with ID are also likely to experience difficulties in these areas.

When it comes to the third element of the triad, repetitive behaviours have long been known to be associated with people with ID. For example, one study found that 57 per cent of residents of a facility in Ireland for people with ID showed stereotyped behaviour. There is some interesting evidence that different genetic syndromes may be associated with subtly different patterns of repetitive behaviours. Moss and colleagues developed the Repetitive Behaviour Questionnaire. This rated 17

behaviours. Moss and colleagues developed the Repetitive Behaviour Questionnaire. This rated 17 different behaviours, which they combined into five subscales: Stereotyped behaviour, Compulsive behaviour, Restricted preferences, Insistence on sameness, and Repetitive speech. Data was collected on individuals with ID and from a number of different genetic syndromes: Angelman, Cornelia de Lange, Cri du Chat, Fragile X, Lowe, Prader-Willi and Smith-Magenis. They discovered different patterns of

Cri du Chat, Fragile X, Lowe, Prader-Willi and Smith-Magenis. They discovered different patterns of behaviours depending on the syndrome. They found, for example, that individuals with Cri du Chat syndrome were most likely to have repetitive behaviours attached to objects, whereas those with Smith-Magenis syndrome were more likely to show attachment to people. They included a group which they described as having ‘heterogeneous intellectual disabilities’. They found an indistinctive profile of

as having ‘heterogeneous intellectual disabilities’. They found an indistinctive profile of repetitive behaviour within this group. They suggested that the heterogeneous ID group could be considered to be the central point of a spectrum of repetitive behaviours on which some participant groups such as the Angelman syndrome group score below this and others such as the Fragile X syndrome group score above, with the other participant groups placed at various points on items and subscales within

above, with the other participant groups placed at various points on items and subscales within this spectrum. They did not have a separate group of individuals with an ASD diagnosis, but used the Autism Screening Questionnaire to measure autistic features in each of the groups. They found no association between autistic spectrum phenomenology among three of their five syndrome groups, with some specific correlations in two of the groups: Cri du Chat and Fragile X. According to their study,

specific correlations in two of the groups: Cri du Chat and Fragile X. According to their study, therefore, repetitive behaviours are not confined to people with an autism diagnosis and are common in people with intellectual disabilities. Whatever the diagnosis of the person, it seems essential that an individual analysis of the functions of such behaviours are made, as it is not possible to generalise what the function of each behaviour is. For example, Joosten, Bundy and Einfeld looked at the

what the function of each behaviour is. For example, Joosten, Bundy and Einfeld looked at the functions of stereotypic and repetitive behaviours for children with ID with and without a diagnosis of ASD. Although they found some differences between the groups on the likelihood of behaviours having certain functions, the context of the behaviour had a bigger influence. For example, for both groups, sensory enhancement was a more likely motivator in free time and anxiety reduction was a more

sensory enhancement was a more likely motivator in free time and anxiety reduction was a more likely motivator during transition between activities. Once again, the message seems to be ‘generalise at your peril’.

In addition to the triad of impairments, there are also a number of other problems that are commonly associated with autism. These include sensory dysfunction. For example, ‘Many people with autism may experience some form of sensory sensitivity or under-sensitivity, for example to sounds, touch, tastes, smells, light or colours’. Some conditions, such as auditory hypersensitivity, are so closely associated with the common view of autism that ‘autism friendly’ cinema showings are put on with

associated with the common view of autism that ‘autism friendly’ cinema showings are put on with lower sound levels and more ambient lighting. So what is the evidence that autism is associated with over- or under-responsiveness to sensory stimuli, preoccupations with sensory features of objects or unusual reactions to sensory stimuli? In one study, Ying-Hua Tan and colleagues compared various sensory differences of 156 children with an ASD diagnosis with 141 children with other language delays.

differences of 156 children with an ASD diagnosis with 141 children with other language delays. They found that 49 per cent of the children in the ASD group showed auditory hypersensitivity; however, 28 per cent of children with language delay also reported this. It seems therefore that knowing a person has autism does not imply that they must also have auditory hyper-sensitivity, just as the absence of a diagnosis does not mean the person does not have this hyper-sensitivity. In their review

of a diagnosis does not mean the person does not have this hyper-sensitivity. In their review of the evidence for sensory dysfunction in autism, Rogers and Ozonoff reached equivocal conclusions: ‘sensory symptoms are more frequent and prominent in children with autism than typically developing children, but there is not good evidence that these symptoms differentiate these children from other developmental disorders.’ Chronic hypo-arousal or hyper-arousal has been used as an explanation for

developmental disorders.’ Chronic hypo-arousal or hyper-arousal has been used as an explanation for rigid and repetitive behaviours. For example, one theory suggests that stereotypic behaviours and general withdrawal from the social world develop as a way of preventing further over-arousal. Rogers and Ozonoff also reviewed the evidence supporting the various theories of sensory dysfunction, but again came to equivocal conclusions: in reviewing the evidence relevant to two theories of sensory

again came to equivocal conclusions: in reviewing the evidence relevant to two theories of sensory dysfunction in autism, over- and under-arousal theory, we find that there is very little support for hyper-arousal and failure of habituation in autism. There is more evidence that children with autism, as a group, are hypo-responsive to sensory stimuli, but there are also multiple failures to replicate findings and studies that demonstrate lack of group differences. To summarise, then, each of

findings and studies that demonstrate lack of group differences. To summarise, then, each of the features of ASD may not be shown by someone with an ASD diagnosis, but may be shown by someone with an ID (see Table 11.1). For each ‘symptom’ the severity and nature of any difficulties will vary by individual more than by diagnosis.

| Features                                                | People with ASD                                                         | People with ID                                                          |
| :------------------------------------------------------ | :---------------------------------------------------------------------- | :---------------------------------------------------------------------- |

| Social impairments                                      | Likely to have these impairments, nature varies with individual         | May have these impairments, nature varies with individual               |
| Communication impairments                               | Likely to have these impairments, nature varies with individual         | May have these impairments, nature varies with individual               |

| Repetitive/restricted behaviours and interests          | Likely to have these impairments, nature varies with individual         | May have these impairments, nature varies with individual               |
| Sensory sensitivities                                   | May have hyper-, hypo- or no sensitivities                              | May have hyper-, hypo- or no sensitivities                              |

Is there really then little difference between people with ID with or without an ASD diagnosis? As we have seen, there is a great deal of commonality between the two conditions. However, there have been many attempts to identify the specific profile of difficulties for people with an ASD diagnosis. For example, Matson, Wilkins and Ancona carried out an empirical study to describe symptom patterns in adults with autism and severe intellectual disability. They compared 57 adults with ID who met

in adults with autism and severe intellectual disability. They compared 57 adults with ID who met ICD-10 diagnostic criteria for autism, with 57 matched controls with ID only. They found that the adults with autism showed a clear and distinct symptom profile compared with matched controls. Significant correlations were found between items on the scales they used and the diagnosis of autism. These were so marked that, by combining the items together, they could predict the diagnosis correctly in

were so marked that, by combining the items together, they could predict the diagnosis correctly in 90 per cent of the cases. This study raises the interesting general question when we are considering whether the autism diagnosis is helpful when it comes to treatment implications, which is: does a finding of average group differences actually predict what an individual’s needs are? In their study, Matson and colleagues found the five most frequently endorsed symptom items for the people with

Matson and colleagues found the five most frequently endorsed symptom items for the people with autism were: awareness of the rules of play; interest in social activities; interest in what other people say; peer relationships; and limited number of interests. The percentage of the autistic group rated as having problems for these items ranged from 98 per cent to 91 per cent. These were significantly higher than the non-autistic group. However, if we look at the control group who did not have an

higher than the non-autistic group. However, if we look at the control group who did not have an autism diagnosis, the percentage rated as having problems on these items ranged from 68 per cent to 47 per cent. So, a large proportion of the non-autistic group also had problems in these areas, while a small minority of the autistic group did not. Even when there are statistically significant differences between groups of people labelled autistic and others who are not, this does not imply that we

between groups of people labelled autistic and others who are not, this does not imply that we know which problems a specific individual with the label will have and that individuals who don’t have the label, don’t have the problems.

DOES THE LABEL ‘AUTISTIC’ HELP US TO KNOW HOW TO HELP THE PERSON? For Autistic Spectrum Disorders, a lot of effort and resources are put into the diagnostic process. Local teams may not have the expertise to provide the definitive diagnostic assessments and people may be referred out of their locality, or to private services, which may charge thousands of pounds for a diagnosis. It is often assumed that the point of diagnosis is to make sure that the appropriate help is given to the person,

that the point of diagnosis is to make sure that the appropriate help is given to the person, for example: ‘this is the case even for those who are already receiving support for a learning disability or mental ill-health: diagnosis of autism can change the way they are treated’. However, in practice, once we have the ASD diagnosis, does this actually add to our ability to help the person? In the United Kingdom the National Institute for Health and Care Excellence (NICE) provides national

the United Kingdom the National Institute for Health and Care Excellence (NICE) provides national guidance and advice on health and social care interventions. NICE produces what it claims are evidence-based guidance and advice for health, public health and social care practitioners, and has produced guidelines on autism in both children and adults. These include guidance on best practice in psychosocial interventions, based on a review of the research. The guideline on adults on the autistic

interventions, based on a review of the research. The guideline on adults on the autistic spectrum suggests a range of psychosocial interventions. It is interesting that these are based on the individual presenting problems of the person, rather than using the diagnosis as a guide:

*   For social communication difficulties it recommends a group or individual social learning programme focused on improving social interaction. Social learning programmes to improve social interaction should typically include: modelling, peer or individual feedback, discussion and decision-making, explicit rules, and suggested strategies for dealing with socially difficult situations.

*   For adults with autism who are socially isolated or have restricted social contact, consider a group or individual based structured leisure programme focusing on interests and abilities of the individual with structure and support.
*   For people with anger problems, provide an anger management intervention including a functional analysis of anger and anger-provoking situations, coping and problem-solving skills and relaxation training.

*   For challenging behaviour, provide interventions for any physical disorders, and then do a functional analysis of behaviour, using this to plan a behavioural intervention.

This is sound guidance, but is no different to the guidance which would be given about anyone with an intellectual disability, whether they ‘had autism’, or not. Interestingly, when developing this guidance, the group used 25 research studies for treatment options, 15 of which were on people with ID, three were on people with ID and ASD, while only seven were with people diagnosed with ASD alone. It appears that evidence supporting condition-specific treatments for people with a diagnosis of an

It appears that evidence supporting condition-specific treatments for people with a diagnosis of an ASD is hard to find.

ARE SPECIAL TREATMENTS FOR AUTISM SPECIAL? There are a number of treatment packages which are frequently used by specialist autism services. Three common approaches are Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), Picture Exchange Communication System (PECS) and Applied Behaviour Analysis (ABA).
 Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH)

Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH)
TEACCH was founded in the University of North Carolina in 1972. It claims to be a family-centred, evidence-based practice for autism, based on a theoretical conceptualisation of autism, supported by empirical research, enriched by extensive clinical expertise, and notable for its flexible and person-centred support of individuals of all ages and skill levels.

The principles and concepts guiding the TEACCH system are listed as: *   Improved adaptation: through the two strategies of improving skills by means of education and of modifying the environment to accommodate deficits.
*   Parent collaboration: parents work with professionals as co-therapists for their children so that techniques can be continued at home.

*   Assessment for individualised treatment: unique educational programmes are designed for all individuals on the basis of regular assessments of abilities.
*   Structured teaching: it has been found that children with autism benefit more from a structured educational environment than from more ‘free’ approaches.
*   Skill enhancement: assessment identifies emerging skills and work then focuses upon these (this approach is also applied to staff and parent training).

*   Cognitive and behaviour therapy: educational procedures are guided by theories of cognition and behaviour suggesting that difficult behaviour may result from underlying problems in perception and understanding.
*   Generalist training: professionals in the TEACCH system are trained as generalists who understand the whole child, and do not specialise as psychologists, speech therapists, and so on.

Virues-Ortega, Julio and Pastor-Barriusoc carried out a meta-analysis of studies of TEACCH in practice and found overall only small effects on communication and activities of daily living, though larger gains in social behaviour and decreases in maladaptive behaviour. The mixed results may partially reflect the difficulty in assessing the impact of a multi-component package, when many of the parts of it may be present in other approaches. TEACCH therefore is an individualised programme of skill

of it may be present in other approaches. TEACCH therefore is an individualised programme of skill development, therapy and environmental manipulation based on a holistic view of the individual derived from an individual assessment of their strengths and needs. However, would this not perfectly describe the sort of approach that is desirable for any person with an intellectual disability, whether on the autistic spectrum or not?

Picture Exchange Communication System (PECS) PECS was developed in 1985 in Delaware as a unique augmentative/alternative communication intervention package for individuals with ASD and related developmental disabilities. It uses the theories of B.F. Skinner to teach communication skills by reinforcing the exchange of pictures for objects or actions. It develops from this to teach more advanced language strategies. The approach has been successful in improving communication by children and

language strategies. The approach has been successful in improving communication by children and adults who have little or no speech, whether this deficit is related to autism or other developmental disabilities. For example, Hart and Banda reviewed 13 single-subject studies which included 39 individuals with developmental disabilities, 56 per cent of whom also had an ASD diagnosis. They found that most subjects, with or without ASD, showed improvements in communication skills, although

that most subjects, with or without ASD, showed improvements in communication skills, although improvements in speech were only shown by a small minority. PECS seems to be a useful aid to communication training, but seems applicable more broadly than just to those with an ASD diagnosis. Again there is no clear rationale for why this would not be good practice for all with ID who may benefit.

Applied Behaviour Analysis (ABA) Though widely talked of as if it is a specialist intervention for people on the autistic spectrum, in fact ABA has for decades been an approach applied to all aspects of human behaviour. Again rooted in the behaviourist approach of Skinner, it obtained a focus with the first publication of the Journal of Applied Behaviour Analysis in 1968. It has most widely been used with children and adults with ID. For example, in a review of 30 years of use of ABA with

been used with children and adults with ID. For example, in a review of 30 years of use of ABA with challenging behaviour, Beavers, Iwata and Lerman found that 88 per cent of their studies were on people with an ID diagnosis, whilst 37 per cent were with people with an ASD diagnosis. Applied Behaviour Analysis is therefore another treatment that is not autism-specific.

What do specialist services provide? If the attributes of someone with an ASD diagnosis aren’t unique to that condition, and the specialist treatments developed for ASD do not contain any special methods, what do autism specialist services provide? Harker and King, in a 2004 report for the National Autistic Society, said that features of specialist provision should be:
*   individual person-centred planning *   understanding problems of communication, social awareness, stress and anxiety

*   teaching independence and behavioural skills *   using schemes for structuring an environment to be autism-friendly *   awareness of physical standards and design issues *   risk and risk management practice *   helping developing social networks and social inclusion *   ensuring there is some specific training for staff on Autistic Spectrum Disorders

*   setting appropriate service standards. Much of this list is open to questioning. For example, if we believe that people with an ASD label may have hyper- or hypo-sensory sensitivities in a range of modalities, and that these may also occur in others with ID, what does an ‘autism-friendly’ environment actually mean? Most of the list, however, would be applicable to any service provision for people with ID. The guidance on autism from NICE says the following: If residential care is needed for

with ID. The guidance on autism from NICE says the following: If residential care is needed for adults with autism it should usually be provided in small, local community-based units (of no more than six people and with well-supported single person accommodation). The environment should be structured to support and maintain a collaborative approach between the person with autism and their family, partner or carer(s) for the development and maintenance of interpersonal and community living

partner or carer(s) for the development and maintenance of interpersonal and community living skills. It goes on to encourage individualised approaches to facilitate integration in the community. It is hard to argue that these approaches are not desirable, but it is equally hard to argue that the same approaches would not benefit people with ID and, indeed, people who require forms of residential care generally.

Perhaps specialist autism services are better because they group together people with the same needs. There is a general argument that there are advantages in grouping people with similar disabilities together. For example, Mansell and colleagues suggest: ‘Sometimes functional grouping in community settings reflects an explicit attempt to provide specially tailored support and care for individuals with similar needs’. They then go on to point out that there have been mixed results from

with similar needs’. They then go on to point out that there have been mixed results from research into functional grouping of people in community settings. Hatton and colleagues found that there were advantages in grouping together people with visual impairments. However, there is evidence that, for people with severely challenging behaviour, functional grouping in specialist homes may offer no advantages or may even result in worse outcomes. When considering the ASDs, one could hypothesise

advantages or may even result in worse outcomes. When considering the ASDs, one could hypothesise that grouping together people with communication difficulties and problems in understanding social behaviour may actually make life harder for them. What will they see to model effective communication on? How will they learn widely accepted interpersonal behaviours? Alternatively, one could argue that specialist environments give the chance to devise ‘autism-friendly’ physical environments and

that specialist environments give the chance to devise ‘autism-friendly’ physical environments and allow staff to develop special expertise in skills relevant to those with autism. However, as we have seen, it is debatable that there is one ‘special’ type of environment that will be friendly to everyone with autism. Do you keep it quiet to avoid overstimulation or will this make life harder for those with auditory hypo-sensitivity? One could also question what ‘special expertise’ staff will

those with auditory hypo-sensitivity? One could also question what ‘special expertise’ staff will develop, when we have seen that the ‘special treatments’ all have something to offer people with ID including those who do not have an autism diagnosis. The evidence on the effects of grouping people with autism together in specialist services is limited. Felce and Perry studied 76 residences for people with ID which they classified as having either ‘congregate groups’ of people with autism or not.

with ID which they classified as having either ‘congregate groups’ of people with autism or not. To be classified as a congregate group, at least 60 per cent of the home’s residents had to have had an ASD diagnosis (as classified on a battery of assessments). They described 50 of the 76 residences as ‘congregate groups’. They assessed various lifestyle outcomes for the residents, including involvement in the community, participation in everyday activities and staff attention. They found some

in the community, participation in everyday activities and staff attention. They found some differences in the residence management between the groups. Non-congregate settings tended to be larger, with better organised working methods. However, when the residents were matched for levels of ability and challenging behaviour, there were no significant differences in resident outcomes between the types of settings.

CONCLUSION This chapter set out to look at how the diagnosis of autism helps us to help the individual. Having a reliable and valid diagnosis should help us to:
*   understand the person’s problems *   know the best way to help them *   help us to set up services that provide for the specific needs of the group with the diagnosis.

What we have seen, however, is that the impairments and other features of people with an ASD diagnosis are not unique to those individuals, but are also found in other people with ID without an ASD diagnosis. Official guidance on treatment for people on the autistic spectrum is based on treatments and general research that also helps people with ID. I have also discussed how specialist service models for people on the autistic spectrum do not seem to provide anything that a good service for

models for people on the autistic spectrum do not seem to provide anything that a good service for people with ID shouldn’t also provide. Despite this, vast resources are invested in diagnosing people with an ASD and setting up special services for them. It seems that the evidence that points to the diagnosis telling us very little about the individual or how to help them is treated as irrelevant. There are three disadvantages for this state of affairs continuing:

*   We are in danger of wasting scarce resources on a diagnostic process which has little benefit to the people it serves or their families.

*   We are in danger of creating a two-tier service for people with intellectual disabilities, with those who have an ASD label getting access to more resources than those who don’t. Emerson and Baines estimated that between 20 per cent and 33 per cent of adults with ID could also be diagnosed with an ASD. This means that specialist teams, day centres, schools, residential provision, and so on, are being set up which are denied to 70–80 per cent of people with ID even though they are also

on, are being set up which are denied to 70–80 per cent of people with ID even though they are also likely to benefit from them.

*   We are in danger of providing block treatments for people based on their diagnostic label rather than an individualised assessment of need and a corresponding treatment/management programme.

What then is the alternative? We seem to be in an era of increasing specialisation of health and social services with the emphasis being on precision of diagnosis together with ‘evidence-based’ treatment pathways. Yet there is also an increasing concern with the holistic needs of the person and of treating the individual in a person-centred way, with dignity and compassion. The study of the concept of autism, and of people who are given that label, has stimulated many fruitful ideas and

concept of autism, and of people who are given that label, has stimulated many fruitful ideas and techniques. Our challenge is now to make the benefits available to all who need them regardless of diagnosis, and to develop forms of help that are based on the individual’s needs and strengths.

In terms of assessment, then, we need to ask a series of questions for each person with an ID, whether they have an autism diagnosis or not. These would cover social interaction, communication, repetitive and restricted behaviours, and also how they sense the world. Do they have difficulties with social interactions? What exactly are these difficulties? Do they have difficulties recognising and responding to emotions? Do they have difficulties learning social rules? What do they understand

responding to emotions? Do they have difficulties learning social rules? What do they understand about non-verbal behaviour and body language? In terms of communication, speech and language therapists have developed many useful assessments of verbal and pre-verbal communication competences, both expressive and receptive. As well as these we need to be aware of more subtle difficulties, for example misunderstandings of similes and metaphors, or taking colloquial phrases literally. In terms of

misunderstandings of similes and metaphors, or taking colloquial phrases literally. In terms of restricted interests and repetitive behaviours, we need to carry out a functional analysis of these – what function do they appear to serve? When are they most or least frequent? What seem to be setting factors and triggers for them? In terms of possible sensory issues, what do we know of the person’s auditory sensitivity, or their visual acuity, or taste, or smell? If the person behaves in ways

auditory sensitivity, or their visual acuity, or taste, or smell? If the person behaves in ways described as ‘challenging’ we need to complete a full functional analysis of the behaviour as the first step. After a full assessment of the person’s individual pattern of difficulties, we can create a formulation of their problems. It should be pointed out, that many features often described as ‘autistic’ may not be problematic at all. Restricted interests may make a person an expert in a particular

may not be problematic at all. Restricted interests may make a person an expert in a particular field. A person may have idiosyncratic social interactions, but still survive happily in their local community. Personal characteristics will only become major problems if they inhibit the person’s wellbeing and quality of life. A formulation will link up what we know of the person’s pattern of strengths and needs with what we know of their history and current behavioural influences. For example, an

and needs with what we know of their history and current behavioural influences. For example, an odd way of interacting may have led to bullying in the past, which has led to the development of current unbearable anxiety when confronted by any but the most familiar people. Having formulated the person’s major problems, this should lead on to the implications of this in how to help the person. This would include aspects of their physical and social environment, as well as techniques for

This would include aspects of their physical and social environment, as well as techniques for supporting them in having a full quality of life experience. There may also be implications for particular educative or therapeutic techniques. All this work is applicable to anyone with an ID. This chapter has not considered people in the average or above range of intellectual ability who are labelled as having an ASD. While some of the specific assertions would not apply, many of the general

as having an ASD. While some of the specific assertions would not apply, many of the general arguments are the same. Fundamentally, we would want to see an individual assessment of each person to produce a formulation of their needs, and packages of help built around these. The UK Autism Strategy Fulfilling and Rewarding Lives asserts: Diagnosis alone is not enough: the fundamental change we want to see is that diagnosis leads to a person-centred assessment of need, in line with the NHS and

to see is that diagnosis leads to a person-centred assessment of need, in line with the NHS and Community Care Act 1990. What is unclear is why we need the diagnosis in the first place for this person-centred response the guidance seeks.

INTRODUCTION Autistic Spectrum Conditions (ASCs)1 are a boom industry from academia to the world of fiction. Biomedical understandings of ASCs are a powerful story in contemporary health and social care services for disabled people with learning difficulties,2 in health and social care more generally, and in the wider culture of the global North. Autism is most commonly clinically framed as a neurodevelopmental disorder.3 However, a dramatically different perspective is elaborated by Timimi

neurodevelopmental disorder.3 However, a dramatically different perspective is elaborated by Timimi and colleagues who interrogated the makings of autism and found, in line with the sparse scientific evidence for autism as a biogenetic disorder, that autism functions as a: metaphor for focusing on a disparate range of behaviours that suggest a lack of the type of social and emotional competencies thought to be necessary for the functioning of societies dominated by neoliberal economic and

thought to be necessary for the functioning of societies dominated by neoliberal economic and political foundations. This bracing view is that the construct of autism is culturally and historically specific and also tells us more about gender relations in late capitalism than it does about biology: ‘it is boys who are increasingly unable to fulfil the cultural expectations of an essentially non-gendered childhood’. This situates ASCs as developing in relation to mutable cultural norms. Writing

childhood’. This situates ASCs as developing in relation to mutable cultural norms. Writing about reading difficulties, now commonly medicalised as dyslexia, Campbell notes that impairment categories shift in their proximity to the norm over time. Bodies now labelled as autistic were perhaps closer to the norms of the late nineteenth and the early to mid-twentieth century. These bodies and their characteristics are increasingly distant from the kinds of humans – those of the ‘agile’ or ‘flexed’

are increasingly distant from the kinds of humans – those of the ‘agile’ or ‘flexed’ workforce, narcissistic, hypersocial and so on – demanded from the second half of the twentieth century to the present day by the changing socio-economic conditions of neoliberal capitalist cultures and a service economy. This chapter focuses on psychotherapy and, in particular, systemic or family therapy with disabled people with learning difficulties and ASCs. What might be the response of therapists working

people with learning difficulties and ASCs. What might be the response of therapists working with disabled people with learning difficulties to the labels and knowledge(s) developed around ASCs? What might a critical (including a focus on the importance of power) and systemic (the importance of context, meaning and connection) therapy have to offer? According to Hoffman, systemic therapy is an art of lenses – it concerns contextual artistry, the playing with differing viewpoints, differing

art of lenses – it concerns contextual artistry, the playing with differing viewpoints, differing frames. For example, a view of a particular person with learning disability (let’s call her ‘Megan’) as having ‘aggressive challenging behaviour’ may be understood differently when placed alongside understandings that put to one side this kind of service language. So we might ask: ‘If you were to talk about this person without using these words, how would you talk about what is going on? Is the

talk about this person without using these words, how would you talk about what is going on? Is the person lonely? Frightened? Angry?’ We can ask questions that frame the issue in socio-economic contexts and ask: ‘What power does Megan have to influence the conditions of her life right now, be a member of this community…did Megan choose to live here?’ And we can frame this behaviour as a (important) communication and enquire: ‘So you feel her behaviour is “attention seeking”? What kind of

communication and enquire: ‘So you feel her behaviour is “attention seeking”? What kind of attention might Megan need right now and how might it make sense for her, given the environment she finds herself in, to seek this in this manner?’ In co-creating multiple frames, a critical systemic therapy relativises and problematises the dominant biomedical frame. There are always alternative ways of describing, engaging and making the social world. I work in community learning disability teams as a

engaging and making the social world. I work in community learning disability teams as a systemic therapist and a proportion of those I meet also have an ASC diagnosis. The next section of this chapter introduces the literature on systemic therapy, disabled people with learning difficulties and ASCs.

1 This chapter employs the term Autistic Spectrum Conditions as opposed to Autistic Spectrum Disorders in acknowledgement that for some persons so labelled and their supporters their experiences are not appropriately reflected in the potentially stigmatising term ‘disorder’.

2 This chapter uses this term to imply that those referred to are people first who are disabled by oppressive social environments. Other terms in use include Intellectual Disabilities (in a North American and Australasian context) and Learning Disabilities (in a UK context).
3 A neurodevelopmental disorder is impairment in the functioning of the brain or central nervous system that develops as the individual grows.

SYSTEMIC THERAPY: DISABLED PEOPLE WITH LEARNING DIFFICULTIES AND AUTISTIC SPECTRUM CONDITIONS

In the global North, disability and disabled people with learning difficulties and autism are predominantly framed through the dominant individual medical model requiring individual medicalised or psychologised cure, rehabilitation or remediation. Given systemic therapy’s focus on the relational – that problems develop in the space between people – it is unsurprising that there has been relatively little literature on systemic therapy and ASCs and less still on those with learning difficulties

little literature on systemic therapy and ASCs and less still on those with learning difficulties who also have a label of ASC; autism is viewed predominantly as an individual cognitive issue. Additionally, echoes of the mother-blaming past of early family approaches to autism may still cast a shadow. Psychotherapeutic approaches for people with learning difficulties have more generally been neglected. There is, however, a steadily growing literature on systemic therapy and disabled people with

There is, however, a steadily growing literature on systemic therapy and disabled people with learning difficulties. Additionally, a number of systemic therapists have written about their work with people with ASC though these are not necessarily persons also labelled with learning difficulties. Simon described her work with families with a child with Asperger Syndrome. Simon immerses herself in the child’s area of special interest, showing how it is meaningful to them and how the content of

the child’s area of special interest, showing how it is meaningful to them and how the content of their special interest may be used metaphorically to guide the session with the family. Munro describes a model of working with teenagers with Asperger Syndrome incorporating family therapy, narrative therapy, cognitive behavioural therapy and other therapeutic methods to produce an integrated approach. Migerode explored the place of diagnosis in systemic couple therapy and characterises diagnosis

Migerode explored the place of diagnosis in systemic couple therapy and characterises diagnosis as a meaning and an opportunity to belong to a community as well as a path to exclusion. Migerode, Vander Elst and Rober examined the way that couples with one member with autism talk about autism. They found that though couples often did find the diagnosis useful – in creating some understanding about what was ‘wrong’ with the partner – it was, however, not without problems for the couple, for

about what was ‘wrong’ with the partner – it was, however, not without problems for the couple, for example when conflict was created by one partner agreeing with the diagnosis and the labelled partner not agreeing with it. The research suggests that the label might provide initial relief from questions, insecurities and self-blame (particularly for the partner of the person diagnosed); however, this leads to further questions, insecurities and problems about how to manage new identities – for

this leads to further questions, insecurities and problems about how to manage new identities – for example occupying the sick role – for the diagnosed person. Diagnosticians may well be less likely to witness these later issues, resulting in a biased opinion about the impact of diagnosis. There seems no reason to believe that this will significantly differ in couples of disabled people with learning difficulties and ASC.

SYSTEMIC THERAPY: CORE CONCEPTS AND PRACTICES In order to explore what a critical systemic approach might offer, it is important first to introduce some core contemporary systemic therapy concepts and practices.

Critical Systemic therapists may work with an individual, yet more often work will occur with couples, family groups, relational networks or organisations. Systemic therapy focuses on what happens between people – how they interact with one another and one another’s ideas. Contemporary systemic therapy views these processes as constituting people-in-relationship; that is, we are made by and through the communications. Systemic therapy is thus well placed to act as a critical voice amongst

through the communications. Systemic therapy is thus well placed to act as a critical voice amongst psy-professionals and the autism industry as it has, to some extent, created space between itself and the contemporary Western focus on the individual bioself – the model that informs much psychological practice4 – as foundational.

4 However, there is emerging evidence that in relation to disability, at least in terms of its contemporary literature, the profession stills draws predominately upon medical model ideology.

Context Context is a central component. Meaning emerges out of the things we do together (stories lived) and the way we narrate these things (stories told). Meaning is both created in context and is a context for other meanings. Diagnoses may be powerful contexts and invite therapists to ask themselves and others questions such as:
*   ‘What autism stories are organising meaning and action in this family/couple/organisation?’

*   ‘What autism stories are organising meaning and action in this family/couple/organisation?’
*   ‘What is “autism” a context for (episodes, identities, relationships and so on) and in what contexts (home, clinic, club, shop) is this understood?’

*   ‘Does this make preferred ways of being-in-relationship?’ *   ‘What if we imagined other stories?’ For example, we might consider the ASC as the primary concern when focused on the difficulties a young man is experiencing, thus occluding other important contexts such as socio-economic inequality, disablism, service quality, the contribution of others to relational difficulties, or issues of age, race, gender, sexuality and identity more generally. For systemic therapy there are always

of age, race, gender, sexuality and identity more generally. For systemic therapy there are always multiple stories that can be told about any pattern of action, and redescribing those leads to the possibility for new actions. This frees therapists from finding the ‘true’ description of events. Often people in the system of concern hold very different ideas about the nature of a problem. A father may believe his daughter’s self-harm is ‘attention seeking’, a sibling view it as an aspect of a

may believe his daughter’s self-harm is ‘attention seeking’, a sibling view it as an aspect of a ‘syndrome’, a psychologist may focus on the need for parental consistency and so on. Systemic therapists view all of these as stories or ‘punctuations’. In such situations, exploring and supporting coherence and coordination of stories (including stories about autism) between the person and significant others may be part of systemic therapy. For example, dialogue may be supported between a service,

others may be part of systemic therapy. For example, dialogue may be supported between a service, let’s call them ‘The Pines’, who hold a strong biomedical neurodevelopmental view, and parents of a person with an ASC label who may reject the label and attribute ‘challenging behaviour’ to poor service quality and other personal characteristics of their son whom they believe to be ‘attention seeking’. In such a situation the use of mediation skills, such as helping system members to connect with

In such a situation the use of mediation skills, such as helping system members to connect with one another’s common intentions (providing a good quality of life for the person), may support a context where moving forward becomes possible.

Circularity Systemic therapists hold a circular and dynamic position on social realities where causes and effects become punctuations made by observers or participants in interactional sequences. In the patterns of action that make up life, one person may be viewed as beginning the pattern (cause) and one as responding to the ‘cause’. This can lead to one person being seen as more blameworthy than another, depending on the punctuation of the interactional sequence. Labels that describe some

than another, depending on the punctuation of the interactional sequence. Labels that describe some people as falling away from social norms may invite punctuating at those labelled as the causes of problems, as in, ‘he causes problems in the family because his ASC means he doesn’t see others’ points of view’, which then frames possible solutions as being concerned with changing, or at least coping with, the labelled person’s behaviour. The invitation of the systemic therapist is likely to be

with, the labelled person’s behaviour. The invitation of the systemic therapist is likely to be of the order of ‘what patterns do we wish to create together’ and ‘who needs to do what in order to create this’. Conflict may occur where different people in a family punctuate the interactional sequence at different points. In our earlier example, ‘The Pines’ may be blamed for its lack of attention to the person’s individuality and the parents for their lack of knowledge about or rejection of

to the person’s individuality and the parents for their lack of knowledge about or rejection of autism. Systemic therapists, assuming blame and shame constrain the creation of good outcomes, adopt the interactional, circular perspective and ask:

*   ‘What are the patterns of interaction between service and family (and person) and what do they produce?’
*   ‘What are the hopes and dreams of the person, the family, the service?’ *   ‘What are the logical connotations of the patterns?’ Systemic therapists will often positively or logically relate current patterns to show that – despite unwanted outcomes – each person’s behaviour has logic given an understanding of their position in context.5

5 There may of course be an issue with service quality that requires addressing (including perhaps a need to work on their abilities in working in partnership with families).

Difference Difference is a resource, and therapists will seek differences that make a difference to the system. Therapists will talk with families and ask family members to talk with each other in ways that are similar enough to make sense to them and yet different enough to provide new information that might be of interest to them. Therapists in this way attempt to both exercise and provoke curiosity. They may enquire about how people have come to have the ideas they have about themselves and

They may enquire about how people have come to have the ideas they have about themselves and others:

*   ‘When did this word autism enter your life and what did it tell you about your son and you, then and now?’
*   ‘When is it useful and when does it need to be put to one side?’ Curiosity leads therapists to enquire about the ‘rules’ around actions and beliefs. Family members are invited to become an audience to their own actions and beliefs so that they may have greater abilities to comprehend and effect change in their lives.

Social construction and reflexivity Contemporary systemic therapists have engaged with social constructionist ideas. For social constructionists, social reality (thoughts, emotions, selves, relationships, family, organisations, culture) is made in social communication. Diagnoses such as autism are no exception to this. This idea has profound consequences for therapeutic work as therapists hold response-ability for the realities co-constructed with clients. When professionals speak uncritically

for the realities co-constructed with clients. When professionals speak uncritically of autism as if its existence was pre-discursive, they take part in reproducing a version of the world with all its attendant consequences – they do not merely report on the ‘facts’. Additionally, therapists may view family and cultural realities as intertwined with hegemonic discourses of race, gender, disability, sexuality, age and so on being negotiated in family life. If social communication constitutes

sexuality, age and so on being negotiated in family life. If social communication constitutes emotion, narrative and meaning then therapists should be constantly alert to how they are feeling, what they are saying, how they are listening, and tune into feedback about the impact these feelings, words, choice of questions, facial expressions, beliefs and so on are having on their clients. To engage reflexively is to become attuned to what we are being organised by, what the therapy is creating

reflexively is to become attuned to what we are being organised by, what the therapy is creating and to the part one is playing in this. It is to critically interrogate our own culturally situated responses to ASCs and disability more generally: We only need to consult our feelings and thoughts about disability – feelings and thoughts gleaned from our culture – to ‘know’ that disability is a condition of ‘abnormalcy’ that should be removed from both individuals and society; these thoughts and

of ‘abnormalcy’ that should be removed from both individuals and society; these thoughts and feelings about disability also tell us that if disability cannot be removed, it must be coped with and adjusted to, and that such practices are second best. Noticing, interrogating, disrupting, and relativising internalised disablism is an aspect of critical reflexive engagement. This is a radically different position from the positivist notion of clinician as dis-covering the reality of the client or

position from the positivist notion of clinician as dis-covering the reality of the client or the myth of the objective ‘God’s eye’ clinician in control of the therapeutic reality.

Systemic practices Therapy will usually begin with developing an agreement about the expectations of the work and how it will proceed. As systemic therapists work with systems, decisions will need to be made about whom to invite. Attention is paid to the referrer, who will generally be spoken with and possibly invited to the first meeting. This is unusual in counselling and psychotherapy; however, they are the person who has produced a written narrative about which they will presumably be

they are the person who has produced a written narrative about which they will presumably be concerned. We ask:

*   ‘Who else is concerned?’ *   ‘About what?’ *   ‘Why now?’ Regarding convening, disabled people with learning difficulties and ASCs will often have large support systems including family members, personal assistants, group home staff, day centre staff, other health and social care professionals, and peers or friends, making the task of who to invite and how best to include the person a very important one. After many years of working with these decisions, I do not have any fixed rules about

one. After many years of working with these decisions, I do not have any fixed rules about this other than that the default option is that the referred person is invited to attend and that the service receiving the referral must have a conversation about who is invited as a ‘one size fits all’ approach is not useful in unique situations. For example, we might not meet with a person together with some members of the significant system if we have reason to believe this will be an aversive

with some members of the significant system if we have reason to believe this will be an aversive experience for the person.

Teams and pairs Systemic therapists are more likely to work in teams or with co-therapists. A team allows for more stories/perspectives. In a pair, one person may speak with the family and the other observe the therapist and family interact. At particular points in the session the observer(s) will be asked to comment on what they have noticed. If there is more than one observer they will usually have a conversation with each other. If there is one observer then a conversation will usually occur

a conversation with each other. If there is one observer then a conversation will usually occur with the therapist. In this way the family are invited to be an audience to their own stories, hearing themselves spoken about as characters in those stories – ‘I was struck by the way John from “The Pines” and Megan’s mother showed their determination to seek the best outcome for Megan. I wonder what they noticed about the conversation so far?’ This conversation should model exploring a number of

they noticed about the conversation so far?’ This conversation should model exploring a number of ideas and no attempt is made to ‘sell’ a single idea. The reflecting conversation attempts to connect to the family’s conversation and ideas and offer something different enough to spark their curiosity. At the end of the reflecting conversation, the therapist asks the family if there is anything they wish to comment on. Systemic therapy may involve anything from a single session to many sessions

wish to comment on. Systemic therapy may involve anything from a single session to many sessions over an extended period. The constitution of the sessions may change over time as, for example, a parental consultation becomes important for a couple to talk together without the children present, or perhaps an individual consultation with the person who finds it easier to discuss his concerns without others present. Persons may bring their key-worker or workers who can act as a resource to the

others present. Persons may bring their key-worker or workers who can act as a resource to the person outside of the sessions. As the work continues, the therapist will check in at least once per session about how the therapy is progressing for each member – ‘Are we talking about the things we need to talk about? What do we need to do more of?’ – and seeks to notice the effects of the conversations. Often a set number of meetings will be agreed so families know what time is available. Therapy

Often a set number of meetings will be agreed so families know what time is available. Therapy often ends with a letter, sometimes jointly written with the family, that records aspects of the work that was important to them.

SYSTEMIC THERAPY IN PRACTICE The language of pathology is necessary for the functioning of institutions. The people I see for therapy or consultation come with various labels, including but not limited to:

*   Learning (intellectual) disabilities *   Autism *   Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) *   Asperger Syndrome *   Attention Deficit Hyperactivity Disorder (ADHD) *   Down syndrome *   Challenging behaviour *   Tourette syndrome *   ODD (Oppositional Defiance Disorder). Living together with the labels and referral storylines are of course unique individuals with unique histories, families and support networks. An outgoing and engaging young man concerned about

unique histories, families and support networks. An outgoing and engaging young man concerned about friendships and the complexities of using social media; an engaging and humorous young man whose unconventional behaviour leads others to be concerned about him; a person who feels lonely since they have moved from a ‘group home’ to a flat on their own where they receive several hours of community support each week; a survivor of institutional abuse who seeks security in the label as a hope that

support each week; a survivor of institutional abuse who seeks security in the label as a hope that she will receive better care if the label is understood by others; an articulate man struggling with starting adult life; parents bemused by their daughter’s behaviour and wondering if the label might offer some certainty and the ‘correct’ treatment; an elderly man who lived with his father till late in his life who is supported by young female carers, the man is said to be ‘obsessed’ by some of

in his life who is supported by young female carers, the man is said to be ‘obsessed’ by some of the carers; parents bemused at their daughter’s condition and struggling to think about their part in the patterns for which they have sought professional help; carers worried that their son may be vulnerable to abuse in the community; parents who are concerned that they may have to move as they have a spare bedroom and wonder if another label may help;6 a man, most likely abused in institutional

a spare bedroom and wonder if another label may help;6 a man, most likely abused in institutional settings, who repetitively mentions a word that appears to relate to these experiences. I see people who have been bullied; people who are angry or confused about their diagnosis; relatives and workers concerned about the person and their behaviour, that may include harming themselves and others; people living in unsuitable environments; people negotiating a number of life transitions, including

living in unsuitable environments; people negotiating a number of life transitions, including the involuntarily dislocation of ‘out of area placements’. In the adult community learning disability teams in which I work, many of these transitions include young adults leaving the family home. Thematically there are those I see who are ‘inducted’ by professionals into a medical model of ASCs; those who are ‘curious’ about ASCs; the ‘pragmatic’ that are wondering if the label might secure resources

are ‘curious’ about ASCs; the ‘pragmatic’ that are wondering if the label might secure resources and interventions; and the ‘resistant’ that oppose the label. The threads linking those I see with whom ASC is an issue is that the person has been to a previous clinician who has diagnosed them as having an ASC or they have come across the term in the media and wonder if it applies to their adult son or daughter with learning difficulties as they seek to understand their behaviour. There indeed

son or daughter with learning difficulties as they seek to understand their behaviour. There indeed appears to be a spectrum of persons who receive the label autism; this, however, is not the same as saying there is an autism spectrum. In sum, a diagnostic frame foregrounds the individual’s ASC characteristics as the highest context marker through which life events and difficulties are then viewed, subjugating the contextual power of episodes of commutation, identity, family history, stories,

subjugating the contextual power of episodes of commutation, identity, family history, stories, beliefs, patterns and legends, community and the shifting norms and specifications of the wider culture. As Timimi and colleagues note, the diagnosis stands in the way of understanding that many paths are possible to difficulties that may appear similar. Let us consider an example of systemic therapy with ‘James’.7

6 The biomedical view of Autism may have dismissed the notion of parental behaviour as a cause of the ASC of their child; however, it exposes them to further risk – first, the risk of being thought to be genetically implicated in their child’s condition; second, to the disciplinary practices of the psy-professions involved in the ASC industry. With a diagnosis comes the prescriptions of the psy-professions for certain understandings and actions that parents must have and perform. Behaviour

for certain understandings and actions that parents must have and perform. Behaviour problems may be viewed as being caused in some measure by parental failure to subject themselves to current professionally formed behaviours and beliefs. Parents are people who must now ‘manage’ their son or daughter. It is up to them to do their utmost (via the latest therapies, for example) to ensure that their autistic son’s or daughter’s unruly body is contained.

7 Consent sought and obtained from ‘James’, which is not his real name.  JAMES James, a man in his late sixties, was described in the referral as having a mild learning disability and a diagnosis of Asperger Syndrome. He lived in a residential service in a rural area. James was described by the referral as using ‘maladaptive’ strategies to avoid following rules he did not like. The ‘strategies’ included setting fires, damaging property (it was noted that he had not done these things for some

included setting fires, damaging property (it was noted that he had not done these things for some years) and ‘going on at people’. The referral, from a health worker (from the part of the UK from which James had recently relocated) and the social worker, felt James would very likely value having someone to speak with about his anxieties and behaviours. James wished to meet with me by himself. We had eight meetings and for most of the meetings a trainee clinical psychologist also participated.

had eight meetings and for most of the meetings a trainee clinical psychologist also participated. James spoke at speed, moving quickly between past and present. At times we had difficulties understanding what James wanted us to hear. Gradually a picture emerged of a person who had received poor care from both family members and staff in institutions. James had spent much of his life in services, including the large institutions before the ‘community care’ reforms of the 1980s. James spoke of

including the large institutions before the ‘community care’ reforms of the 1980s. James spoke of serious physical and psychological abuse.8 James told us he wanted to work on ‘anxiety’ and ‘urges’ as well as where he wanted to live. It also appeared that he valued having a place where we could be witnesses to his experiences. We explored the life of ‘urges’ and ‘anxiety’. James held a strong story that ‘urges’ (e.g. to smash a window) occurred due to Asperger Syndrome. In working systemically

that ‘urges’ (e.g. to smash a window) occurred due to Asperger Syndrome. In working systemically with James we were less focused on either/or logics (e.g. was Asperger Syndrome the correct diagnosis) and more on both/and logics concerning the meanings, place and life of these words for James and others. James had found in Asperger’s a way of framing biography, and in particular a way of making sense of those who had maltreated him and his response to this and to living in institutions more

sense of those who had maltreated him and his response to this and to living in institutions more generally. James had a strong story that those who did not understand the syndrome had maltreated him. Asperger’s also relieved James of responsibility for his actions; they were due to the syndrome. As it said in the letter I wrote with James’ support at the end of our sessions: I understood that Asperger Syndrome (AS) allows you to feel less blamed (more safe) for problems and behaviours that you

Syndrome (AS) allows you to feel less blamed (more safe) for problems and behaviours that you engaged in as you ‘can’t help’ having AS. You said to me: ‘I wasn’t naughty – I was ill, I know the difference.’ Asperger Syndrome as a biomedical label helped James make meaning out of events that seemed unjust and that I felt he was very angry about. James appeared not to feel permitted to express directly anger about his maltreatment; perhaps it did not feel safe. It seemed to me to be entwined with

anger about his maltreatment; perhaps it did not feel safe. It seemed to me to be entwined with ‘urges’ that were protests – they could be understood as displays of anger and defiance at what was happening and had happened in his life. The label Asperger Syndrome minimised the abuse; it was just a lack of education on the part of the staff. We offered James a difference – that is, that regardless of what staff and others knew about ASCs the events he described should never have happened – they

of what staff and others knew about ASCs the events he described should never have happened – they were wrong. We didn’t at any point challenge the diagnosis – though there were question marks raised by other team members. The diagnosis did, however, seem to be less of a topic of discussion as we moved to discussing what James wanted and how he might go about getting it. As mentioned, James did not want to be punished for the acts he described – such as setting fire to buildings and smashing

not want to be punished for the acts he described – such as setting fire to buildings and smashing windows. We developed a story/hypothesis with James that helped us to understand this request as a way of letting us know that he was fearful of being ‘sent back’ to an institution where he would receive harsh treatment and not be ‘allowed’ to engage in his favourite pastime – travelling all day on buses and trains.9

8 Communicated appropriately, with James’s consent, to the appropriate parties. 9 Stories about time can be a key aspect of therapy and we (myself and the trainee I was working with) hypothesised that James’s sense of time was particularly fluid and that the past and present were closely interconnected places through which he traversed.

Curiosity: multiple frames, multiple James James and others told a story of James having a strong dislike of rules, and this was also employed as a way of accounting for past behaviours and current ‘urges’. This appeared as a ‘blocked’ stuck story. A story that says this is how this person is. The story also supported the connected story of James as inherently problematic and these had been both connected with the rigid-thinking ASC story and accepted by James and his service providers. But

connected with the rigid-thinking ASC story and accepted by James and his service providers. But could James and I become curious about this story? If we stepped into other relational framings it turned out that James was also quite a respecter of rules. When I asked James for a unique outcome – a time when a rule was ‘OK’ – he told me about Mr Griffiths from many years ago whose rules he respected. James was ‘allowed’ to go out on the buses if he followed ‘his’ rules.10 Further work with James

James was ‘allowed’ to go out on the buses if he followed ‘his’ rules.10 Further work with James on rules helped us to develop some rough criteria as to the kinds of rules, and from whom, he would be more likely to follow. This included the often-overlooked issue of age and gender as James had problems being – as he saw it – told what to do by women young enough to be his grandchildren. This seemed to soften his story about always not liking the rules of others. What had happened in this moment

to soften his story about always not liking the rules of others. What had happened in this moment to James’s ASC-driven inflexible thinking? Who was being inflexible in their thinking?

10 My embodied response to this story informed me that this broke a ‘rule’ in a strong story I had about what James’s basic rights were. He was an adult, so why was he ‘allowed’! This was quite different from the tone of James’s story. At these points of difference privileging my stories would be at best unhelpful and unethical given that James was telling me of something he clearly remembered fondly.

Self-reflexivity: a route to new understandings In one of our later sessions James said to me that he wanted to control people. I noticed feeling uncomfortable as I heard James say this. At moments such as this, self-reflexivity – a noticing of the stories that are organising the therapist’s hearing, feeling and responding (my discomfort with ‘wanting to control others’ as a goal) – is an important systemic skill. Developing my own curiosity about this story supported listening to James in a

systemic skill. Developing my own curiosity about this story supported listening to James in a way that facilitated James to tell this story and to make connections. He spoke of wanting others, particularly professionals, to stay with him. Staying with a person for the long term was something he saw as being professional, and he also wished to create what he described as a kind of ‘foster family’ where he could be looked after (in the way he had never been, perhaps). This seemed to me to paint

where he could be looked after (in the way he had never been, perhaps). This seemed to me to paint a somewhat different picture of someone who sought family and safety and belonging rather than a thin story of a controlling man. The letter at the end of therapy stated: You have developed ways of coping including being in a ‘power struggle’. I understand James that services need to focus on how to support you to feel safe and also how to find a way of having rules that you are more likely to

to support you to feel safe and also how to find a way of having rules that you are more likely to respect – particularly respecting your age and the experience that comes with it. The focus of the work was not to cure James of irrational thoughts or behaviours (Cognitive Behavioural Framework) or to find the ‘correct’ diagnosis for him (Psychiatric Bio-Medical Framework), but rather a systemic frame where the work was to support him to develop his stories about his experiences, to include the

where the work was to support him to develop his stories about his experiences, to include the critical frame of power, crucial to ethical narratives of disabled life, and to support, with James’s agreement, a sharing of these stories with those who would have power in his life after our meetings had finished. At the end of therapy James invited me to his review meeting to support his telling of our work.

Asperger Syndrome in James’s life Asperger Syndrome in James’s life helped simplify his biography, helped him to feel that his actions were morally legitimate; as well as (as long as others knew about AS) helping him to feel there was a possibility of future safety. However, seeking this safety through the diagnosis had its drawbacks; the framing of a life through Asperger’s robbed James of a sense of agency, offered him an identity as everlastingly ‘ill’, and appeared to temper his sense of

of agency, offered him an identity as everlastingly ‘ill’, and appeared to temper his sense of legitimate protest at maltreatment as a human being. It was also fragile and at risk of being discredited, as different clinicians are encountered and diagnostic fashions change.11 Moreover, it supported thin stories of his personal characteristics (not liking rules/anxious and controlling) that were subsequently troubled and nuanced by the therapeutic process.

11 For example, during our work DSM dropped Asperger Syndrome from its classificatory system. Also at the end of our work I understood that another clinician was considering another diagnosis for James.

WORKING WITH DIAGNOSES Questions and debates around diagnosis have raged for decades and these questions are perhaps as urgent as they have ever been, particularly in the case of ASCs given the phenomenal rise in diagnoses from what was formerly considered a rare condition. Diagnosis is part and parcel of medical model dominated services. Various contexts combine in medicalised services to support the rush and rise in diagnoses of ASCs including the pseudo-health market encouraging the

support the rush and rise in diagnoses of ASCs including the pseudo-health market encouraging the branding of services with the simple authoritative labels that diagnoses such as ASC provide. Autism is characterised by deficit and the status of ‘patient’. That some welcome the diagnosis and others talk of ‘difference not disability’ does not alter this. The logic of normalcy (of the included and fully human and the excluded and not fully human) is not challenged and there are darker ways in

fully human and the excluded and not fully human) is not challenged and there are darker ways in which this plays out. The culture of ableism is illustrative of this. The internet shows sites, videos and so on where people with an ASC diagnosis attempt to distance themselves from and malign people with learning disabilities. Indeed, the term ‘high-functioning’ is often heard at conferences and read on social media, and appears to function as a way of distancing oneself or one’s relative from

read on social media, and appears to function as a way of distancing oneself or one’s relative from the ‘learning disabled’ position. Whilst this may be a useful strategy for individuals, we might well ask who is ultimately responsible for this dilemma, this distancing, this continuing stigma and denigration? We might also ask what kind of culture is being created and with what consequences. Does it mean continued discrimination against people with learning disabilities and a culture where for

it mean continued discrimination against people with learning disabilities and a culture where for those for whom the current version of normal or valued citizen is out of reach, in order to be valued (or at least less devalued) each person needs to seek to obtain the next ‘best’ medical label for themselves or their family member? Moreover, is it a satisfactory state of affairs that professional groups employ a naïve realist position to justify the diagnosis as ‘fact’, which is merely

groups employ a naïve realist position to justify the diagnosis as ‘fact’, which is merely uncovered, or employ a consumerist metaphor to point out that some individuals appear ‘happy’ with ‘their’ label? To what extent do clinicians and services have a responsibility to aggregate the cultural consequences of their day-to-day clinical practices and to ask the question, ‘What are we making?’ The autism-as-difference paradigm, for example, has been critiqued for resulting in a continuing binary

autism-as-difference paradigm, for example, has been critiqued for resulting in a continuing binary of ‘them’ and ‘us’ that fails to challenge the commodification of difference and continues to cast some as ‘other’.

Assessing the risks of diagnosing Given this chapter’s concern that an ASC diagnosis for disabled people with learning

difficulties may be a powerful context (for example, shaping understandings of life; shaping social identity; being of limited clinical value; a source of distress to some diagnosed; an artefact of a market-driven ideology), this raises questions regarding consent to diagnosis of disabled people with learning difficulties. What are the risks of diagnosis – to the individual, to their family, to the community and the wider culture? How as clinicians should we be assessing these risks? How is

the community and the wider culture? How as clinicians should we be assessing these risks? How is capacity to give or withhold consent to the diagnostic process negotiated with adults with more severe learning difficulties? Professionalised spaces are often assumed to be safe spaces and risk as something that is ‘out there’, allied to naïve realist ontology and the power of professional groupings. This is an area that needs further reflection and research.

CONCLUSION: CRITICAL SYSTEMIC THERAPY WITH PERSONS WITH ASCS Biomedical stories dominate the professional world of assessment, diagnosis and treatment services. Medicine may be useful if you are ill; the problem is that medicine finds a home everywhere. When ASC stories achieve salience in a network, ASCs may become a powerful organising context for making sense of life. There are often repeated revisions as multiple diagnoses are applied over a lifetime, reflecting the individual proclivities

revisions as multiple diagnoses are applied over a lifetime, reflecting the individual proclivities of clinicians as well as the mutable fashions of the psy-professions. The critical therapist attempts to bracket these constructs to locate the local, relational, genealogical stories that White and Epston have described as ‘experience-near descriptions’. Furthermore, therapy can be a place to explore positioning around these discourses; the stories of autistic spectrum theorists are but one way

positioning around these discourses; the stories of autistic spectrum theorists are but one way of describing the world amongst many possible, and possibly more fruitful, others. Questions remain. Given the lack of biological markers for ASCs one might legitimately question the use of such scientifically doubtful labels by clinicians. However, in the context of the therapeutic encounter, to reject the label would be to do further injustice to those who have found it a useful way of managing and

the label would be to do further injustice to those who have found it a useful way of managing and making sense of their lives as well as ignoring the coercive power of professional diagnostic categories. That said, listening with a diagnostic ear risks therapeutic violence as a person’s experience is appraised in relation to an external ‘big other’ hegemonic norm, colonising it rather than seeking to understand it in local terms. A critical systemic approach involves curiosity and irreverence

to understand it in local terms. A critical systemic approach involves curiosity and irreverence about psychiatric labels. We ask what this or that use of ‘autism’ makes. For example, the autism industry as a whole contributes to making impairment-talk (talk about biomedical causes of loss or difference in an individual’s functioning) rather than disability-talk (talk about problems encountered when a person with impairment attempts to take their place as a member of their community and

when a person with impairment attempts to take their place as a member of their community and encounters social, environmental and psycho-emotional barriers). More generally, critical therapists, acknowledging and responding to power, may hold open a space for marginalised stories of disability as culture, as spiritual, as socio-economic oppression and so on and be sensitised to all forms of dis/ableism. Therapists may play their part in expanding stories of disabled life, holding diagnostic

Therapists may play their part in expanding stories of disabled life, holding diagnostic hegemony to account and resisting the ever-shrinking parameters of the normal. In sum, systemic therapists and other professionals might ask themselves what kind of home is therapy going to be for ASC stories.

INTRODUCTION The whole place was wobbly and rockly with noise and everything was moving, there was big smells and all the things were different, it was full of dark noise and light noise and echoes and growly voices. (John, in Billington 2000, p.120)

John wrote this description of his experience of a school classroom aged nine which I incorporated originally within a psychological assessment. During the course of such assessments (in education and the family courts in England) it has seemed to me that the lexicon for exploring what we have been thinking of as autism and its place in the world is incomplete and often unsatisfactory. Professional discourses in autism have tended to position any young person diagnosed with autism not just as

discourses in autism have tended to position any young person diagnosed with autism not just as different but as deficient (see Diagnostic Criteria, DSM-5), as perhaps lacking in imagination, friendless, isolated, as a less than version of a human. This isolation, it is assumed, takes the form of a kind of non-permeable membrane supposedly existing between the young person and their (social, cultural) environment which somehow makes aspects of that environment unknowable to them, constructing

environment which somehow makes aspects of that environment unknowable to them, constructing the young person as knowable to others only in the context of their autism. However, during professional practice, such a membrane, if it exists at all, often seemed highly permeable and the young person could on such occasions present not as isolated but as hypersensitive to their environment, for example, to sensory stimuli – sight, hearing, taste, smell and touch – and often to people. The young

to sensory stimuli – sight, hearing, taste, smell and touch – and often to people. The young person could then seem to be almost overwhelmed by their experiences, when internalising aspects of the external world. A young person who had been presenting as otherwise content could suddenly become so agitated/distressed/excited by some kind of sensory stimulus in the environment (human or otherwise) that he or she would appear defenceless against the materiality of the sensation(s). The seemingly

that he or she would appear defenceless against the materiality of the sensation(s). The seemingly overwhelming nature of the sensations would prompt questions in me concerning the young person’s experience, and I would be reminded of Freud’s observation that ‘protection against stimuli is an almost more important function for the living organism than reception of stimuli’. However, while the young person might struggle to protect themselves, as a practitioner psychologist I have been

the young person might struggle to protect themselves, as a practitioner psychologist I have been well-wadded against such exploratory possibilities, armed with ways of talking or writing about autism which have been informed primarily by the authority of medicalised discourse. I have long since come to see such authoritative discourse as a means by which, as a professional, I can defend myself and in the process obscure accounts which might engage with the young person’s experience.

It is perhaps important for you as reader to know that from professional training through to practice as an educational and child psychologist, engagement with ‘experience’, either my own or the experience of ‘clients’ (for example, children, parents, teachers), has rarely been encouraged. This is not merely an ethical concern but also a scientific one since, while professional practice is supposedly built upon scientific principles, any scientific approach to consideration of experience or

built upon scientific principles, any scientific approach to consideration of experience or indeed relationships has been lacking. I have continued to aspire to scientific principles in practice of course, questioning, hypothesising, testing out, formulating and reformulating as part of any assessment. However, there has been an unhelpful disconnect between the theoretical models of the human implicit within clinical models of the person and the actual people with whom I have worked. (Note: My

within clinical models of the person and the actual people with whom I have worked. (Note: My argument is that the customary model of science adopted is one which has been borrowed from the natural sciences and this is not always appropriate when contemplating persons – see Harré 2004.) In addition, increasingly, assessment practices which allow themselves to be restricted by diagnostic discourse at the level of the individual have seemed inadequate not least since the processes involved seem

at the level of the individual have seemed inadequate not least since the processes involved seem oblivious to external factors, for example the socio-cultural context, the processes of governmentality or indeed a human relationality. I have become dissatisfied therefore, in particular, with the incompleteness of the science and the failure to engage with what might be termed the human, a position shared by other practising psychologists, for example: I discovered within a few years of earning

shared by other practising psychologists, for example: I discovered within a few years of earning my Doctorate that models of clinical practice based upon a scientific approach to practice were insufficient (sometimes woefully inadequate) in assisting many of the clients with whom I worked. Professional practices have tended to ignore more complex theoretical models of human relationality in favour of an individualised psychopathology. In this chapter I seek to challenge the biomedical model of

of an individualised psychopathology. In this chapter I seek to challenge the biomedical model of autism and in the process encourage other kinds of professional activity; for example, I refer briefly to phenomenology and then neuroscience. Ultimately, however, I rely on an emerging critical approach to neuroscience in order to find ways of knowing which are sustained by a particular scientific attitude to practice, one which sees the human in the form of actual persons and which possesses a

attitude to practice, one which sees the human in the form of actual persons and which possesses a capacity for socio-political critique, not least since ‘critical neuroscience emphasises the politics implicit in scientific practice’. My motivation to write about autism, since first being ‘hit in the stomach’ by the realisation of what I was encountering, is a result of the ‘clinical encounters’ shared with the many young people with whom I have worked and who have been in receipt of the

shared with the many young people with whom I have worked and who have been in receipt of the diagnosis.

PROFESSIONAL/RESEARCH PRACTICE During early work as a practitioner, I became concerned that some professional accounts of autism might be unacceptable in terms of changing social mores – for example, regarding the ways in which professionals could disallow the ‘voice’ of young people – due to an inability to conceptualise persons and their experiences. I did not want to contribute to a process in which young people’s difficulties were subject to discourses of deficit, but I certainly did not

in which young people’s difficulties were subject to discourses of deficit, but I certainly did not want to do this on the basis of what seemed to be an imperfect and incomplete knowledge base. The following five ‘critical questions’ arose out of that experience:

How do we speak of children? How do we speak with children? How do we write of children? How do we listen to children? How do we listen to ourselves (when working with children)? These questions have proved a useful resource in resisting the deficit discourses and also as a means of thinking about a more scientific approach to consideration of the relational processes implicated in the ‘clinical encounters’, in accordance with Bion’s dictum that ‘the science of relationships has yet to be

encounters’, in accordance with Bion’s dictum that ‘the science of relationships has yet to be established’. However, too often in work with young people, their families and teachers, the narratives of a deficit model of autism being circulated in the processes of diagnosis are already so firmly established that it has been difficult to conceptualise any other aspects of the young person. Young people can all too easily be trapped in a process of ‘classificatory looping’ in which all those

people can all too easily be trapped in a process of ‘classificatory looping’ in which all those surrounding them are engulfed by conceptually restricted accounts of autism and which the young person might ultimately imbibe: ‘classification can be taken up into the self-understanding of those classified’. I found that, as a practitioner, once I engaged, not with a young person, but primarily with conventional autistic narratives, I closed down opportunities for developing or keeping alive all

conventional autistic narratives, I closed down opportunities for developing or keeping alive all kinds of other stories, other selves, which the conventional autism narrative could deny. Accessing and deploying new critical materials thus became crucial to the ways in which I was evaluating my practice. This chapter is part of that self-evaluation, a further attempt to find alternative ways of addressing the above five ‘critical questions’. The following extracts taken from earlier research

addressing the above five ‘critical questions’. The following extracts taken from earlier research provide an example of how, as a practitioner psychologist, I could look beyond the confines of a narrow understanding of a non-human ‘science’ in order to engage with other possibilities, of ‘transforming scars into data’.

Jim During my visit to Jim’s home on a cold winter’s evening, he stood quietly at the window and stared out at the darkness. The moon was bright but my memory recalls that as we gazed together at the heavens Jim spoke briefly of the distances between earth and various other objects in the night sky. He seemed to be conceptualising space in an attempt to locate himself within an external world of objects but in the process demonstrating the capacity to engage meaningfully with his surroundings.

objects but in the process demonstrating the capacity to engage meaningfully with his surroundings. The qualitative nature of such experiential possibilities would invariably be beyond the scope of most autism or behaviour-specific checklists, yet the intensity of his participation in our sparse conversation suggested that we were sharing a meaningful engagement to which we were both contributing spontaneously. The occasion I recollect was characterised by a calmness and thoughtfulness on Jim’s

spontaneously. The occasion I recollect was characterised by a calmness and thoughtfulness on Jim’s part, which had been little in evidence at his school. Of course, the situation was one with many variables. I had already met Jim several times; familiar objects at home surrounded him, and I had developed a warm relationship with his parents over a period of time. I wondered what a different, arguably more scientific approach to practice with persons would look like in this otherwise most

arguably more scientific approach to practice with persons would look like in this otherwise most human, most intrinsically social of scenarios?

Tom Tom was six years old and had received his diagnosis of autism about four years previously. His parents, Bridget and Cary, were said to be unhappy about Tom’s special school and at our first meeting I encouraged them to talk. During a number of subsequent meetings they expressed their sense of frustration, which was not only due to the sheer practical difficulties of living with their son, but also due to the difficult experiences they had had in working with professionals. The parents were

also due to the difficult experiences they had had in working with professionals. The parents were concerned, not just by day-to-day management issues caused by Tom’s behaviour but also about a problem caused by professionals. Bridget and Cary simply did not want to see Tom in the way that some of the professionals were seeing him and nor did they want to talk about him in the way that some professionals were talking about him. To Bridget and Cary, Tom was far more than a psychopathology, an

were talking about him. To Bridget and Cary, Tom was far more than a psychopathology, an agglomeration of deficits, or indeed a suitable subject for a behavioural analysis; he was their son who possessed all kinds of individual qualities and characteristics which they recognised and which prompted in them different emotions and feelings. During the visit to Tom’s special school, I observed that the class housed far too many children, many of whom were presenting the adults with major management

class housed far too many children, many of whom were presenting the adults with major management problems. The children, all of whom had some kind of significant special need, at times moved around the small class space in a seemingly haphazard fashion and the noise could be unbearable. Tom meanwhile had found his own solution to the assaults on his sensory (auditory) equilibrium. At first sight he seemed cocooned, isolated from his environment, and gave no sign whatsoever of any kind of

sight he seemed cocooned, isolated from his environment, and gave no sign whatsoever of any kind of sensory recognition relating to anyone or anything in his surroundings. However, when introduced to the quiet rattling sound made by one of his favourite toy cars, he turned his head immediately. So Tom could hear. Also, in his own movements about the class, Tom’s unerring ability to avoid collisions without actually looking directly at any obstacle indicated that he could also see. He was thus

without actually looking directly at any obstacle indicated that he could also see. He was thus being selective in his attention, choosing to acknowledge or ignore, accept or reject. His sensory information processing thus seemed located in a personal sense of time and space which was inherently psychological and emotional, since he appeared to be taking steps to protect himself from the sensory overload which may have been a source of distress.

Some initial reflections Such observations do not appear immediately to assist in managing the learning or behaviour of either Jim or Tom; especially, should behaviour or learning objectives be required to address simplistic targets, stripped of meaning or quality. However, while there are good practical reasons not to reject simple target-setting, we should not overlook the possibility of a different kind of professional attitude. It is argued here that a finer, more sophisticated balance

different kind of professional attitude. It is argued here that a finer, more sophisticated balance needs to be achieved between what, for example, a professional can claim to know (‘knowledge’) and what he or she might experience, which (currently at least) lies beyond the scrutiny of any traditional scientific method. Just as Jim seemed to be fascinated by conceptualisations of his place in the cosmos, so Tom was attempting to function in relation to the space in which he found himself. They

cosmos, so Tom was attempting to function in relation to the space in which he found himself. They had both, in their own ways, exhibited an awareness of aspects of their environment and their responses reflected an understanding of some inner principles of action in time and space. While the examples cited here could be dismissed as mere narratives, the brief accounts suggest possibilities for how, as practitioners or researchers, we might fine-tune our understandings of the ways in which some

as practitioners or researchers, we might fine-tune our understandings of the ways in which some young people diagnosed as autistic might be engaging with the world and experiencing their lives.

PHENOMENOLOGY AND NEUROSCIENCE Minds emerge from process and interaction, not substance. In a sense we inhabit the spaces between things.

Henri Bergson was a phenomenological philosopher who was sceptical about the capacity of a purely positivist science to answer the most profound of questions relating to the nature and peculiarity of human lives. He was more interested in the kinds of human inquiry which were less amenable to measurement and thus critical of attempts to apply such techniques in situations for which it was ill-equipped: Physics, whose particular function it is to calculate the external cause of our internal

Physics, whose particular function it is to calculate the external cause of our internal states, takes the least possible interest in those states themselves… Bergson believed that all we can do is measure the space between objects or events and that in the process we fail to engage with the experiential phenomena of the human lives which exist in these very spaces – in between the points of measurement. In addition, any consciousness is in-relation-to the existential presence of others and

In addition, any consciousness is in-relation-to the existential presence of others and thus beyond simple measurement. Margaret Lock considered ‘conventional dichotomies between the “inside” and “outside” of the human body’ and in the process challenged traditional assumptions about individual personhoods, the self and, not least, our supposedly bounded minds and bodies. Indeed, arguments borrowed both from contemporary phenomenological philosophy and critical neuroscience would suggest that

both from contemporary phenomenological philosophy and critical neuroscience would suggest that the experiences of Jim and Tom would, as for all, depend not only on the interdependence of mind and body but also on the influence upon them as organisms by dynamic external forces. An emerging principle in critical neuroscience is that ‘mental life requires more than the brain’. A concept, which some philosophers and neuroscientists have been focusing upon, is the ‘4ea’ model of mind, which

some philosophers and neuroscientists have been focusing upon, is the ‘4ea’ model of mind, which attempts to account for mental phenomena and their interdependence on both internal and external processes. For example, it is suggested that ‘embodied’ mind is made up of wider extra-neural structures and processes within the body; that mind is ‘embedded’, functioning in a specific environment; that mind is ‘enacted’ in the world; and that mind is ‘extended’ in ways which are taken into, and

that mind is ‘enacted’ in the world; and that mind is ‘extended’ in ways which are taken into, and received from, the environment. Finally, mind is considered as inherently and unavoidably ‘affective’ (i.e. emotional) not least since ‘minds without emotion are not really minds at all’.

Contemporary neuroscience has fast been expanding the scope of its activities and the technology exists now to provide a window into the inner biological workings of the brain. Indeed, the knowledge it is producing may make important contributions to individual wellbeing in the future. Damasio, for example, provides detailed and iridescent analyses of the neurobiological processes of the brain and makes a number of helpful distinctions, for example between brain (as a material part of the

and makes a number of helpful distinctions, for example between brain (as a material part of the organism) and mind (as process). However, while the forms of knowledge neuroscience is producing may make important contributions to individual wellbeing in the future, Damasio usefully challenges the Cartesian legacy that for humans thinking takes primacy (which has been the assumption of most research and practice in the human sciences) and instead, like Le Doux and others, has begun to see that

and practice in the human sciences) and instead, like Le Doux and others, has begun to see that it is emotion which has as an a priori function at all points within the temporality and spatiality of mind. Damasio is insistent that any underlying unity within mind is ‘the secret behind the “binding” of separate regions [of the brain] by space and time…timing may well be key to relating’. However, he proposes that the map-making processes of mind are not merely cognitive, narrowly conceived,

he proposes that the map-making processes of mind are not merely cognitive, narrowly conceived, since ‘map-making brains have the power of literally introducing the body as content into the mind process’. While there are pressures which have been directing neuroscience to construct itself according to narrow Cartesian principles, some neuroscientists are being attracted outside the conventional boundaries of their science. For example, in tracing the origins of the very particular forms of

boundaries of their science. For example, in tracing the origins of the very particular forms of investigation adopted in the human sciences back to Descartes, Damasio challenges the self-imposed limitations of scientific approaches that are predicated on a necessary schism between mind and body. He acknowledges his debt to Spinoza, the philosopher who, three centuries previously, had testified as to their indissolubility. Damasio challenges what he regards as the Cartesian schism between mind

to their indissolubility. Damasio challenges what he regards as the Cartesian schism between mind and body and does so by suggesting that mind-map processes are intrinsically imbued with sensorily-informed emotionality which we in turn process into human feelings: ‘how perceptual maps are felt and experienced – is not only central to the understanding of the conscious mind, it is integral to that understanding’. Damasio’s ideas link to those of Bergson in seeing our ‘emotional state unfolding

understanding’. Damasio’s ideas link to those of Bergson in seeing our ‘emotional state unfolding in time’. Time, space and emotionality are thus inextricably linked in both phenomenology and neuroscience as processes of mind, underpinning our experience of ourselves, whether neuro- or a-typical. Contemporary neuroscience is currently host to a number of important conceptual dichotomies. For example, the nature–nurture debate is constantly revisited, and there is often uncertainty as to whether

the nature–nurture debate is constantly revisited, and there is often uncertainty as to whether any ‘neurological discrepancies are a cause or an effect of the disordered behaviour’. There are also problems in containing the activities of the brain within the ‘modular’ structure which would make analysis and categorisation much more straightforward for diagnosticians. For example, ‘different people may use different regions of the brain to solve the same task, making the idea of localising

people may use different regions of the brain to solve the same task, making the idea of localising functions…very difficult’. Indeed, the discourses of an astonishing interconnectivity permeate many neuroscientific accounts of the brain and thus resist any simplistic psychological categorisation; while a focusing upon a neural plasticity likewise challenges any reductionist attempts to fix any model of mind/brain in the form of a static, non-dynamic and thus non-changeable psychopathology. The

of mind/brain in the form of a static, non-dynamic and thus non-changeable psychopathology. The importance of the environment, of socio-historical context, and the dynamic nature of the functions of the brain seem to be creating an approach to knowledge which is intolerant of old ways of constructing psychopathology, but is rather an approach to knowing which can tolerate the notion that ‘the genome is a linear and stable sequence [while] the brain is a dynamic structure organised in three

genome is a linear and stable sequence [while] the brain is a dynamic structure organised in three dimensions of space and one of time’.

CRITICAL NEUROSCIENCE We agree with Ian Hacking that science, medicine, education and other institutions and powerful areas of social practice and policy are key contributors in ‘creating’ kinds of people.

Neuroscience is being used increasingly to inform understandings of what it is to be human in almost the same way that psychology had been doing previously during the last one hundred years or so. Media reports are now frequently found to be claiming to reveal the ‘infant brain’, the ‘adolescent brain’, but perhaps more problematically, the ‘ADHD brain’, the ‘brain of an abused or neglected infant’, or indeed the ‘autistic brain’. The technology now exists to picture both our brains and our

or indeed the ‘autistic brain’. The technology now exists to picture both our brains and our bodies – computerised axial tomography (CAT scans), positron emission tomography (PET scans) and functional magnetic resonance imaging (fMRI). Neuroscience has thus been extending the scope of its activities beyond the brain to consideration of the whole body and indeed beyond, to the ‘conditions’ in which it functions, for ‘the brain is not the sole producer of the mind but a relational organ that

which it functions, for ‘the brain is not the sole producer of the mind but a relational organ that mediates the interaction between the organism and its complementary environment’. The nature of popular headline claims made on behalf of neuroscience reinforces an over-zealous reductionism in attempts to seduce the reader to believe that the brain images produced by scanning are realist accounts of the person. What we actually see in such images are, of course, invariably not real brains but

of the person. What we actually see in such images are, of course, invariably not real brains but mere images, representations of a brain which are the products, not solely of a scientific inquiry, but also of a creative partnership in which algorithms of brain functioning are transformed into media artefacts by artists and designers of computer graphics. Even before we begin to critique the

nature of the science, therefore, we need to make a conscious effort to critique first the actual technologies being used, their strengths and limitations, and second, the techniques being used to represent the inner workings of brain and body, for any representations are just that, mere ‘images…[which are] consciously selected to enhance the textual argument’.

Dumit informs us that the images of brains we see in popular culture are invariably not actual brains, of course, but representations, texts which have been produced and which can be read in much the same way as this book, and thus subject to different principles of reading and interpretation. The schism between the actual brains and the means by which those brains are represented thus provides a space which allows for all kinds of other ideas about the human to be inserted. These ideas will

a space which allows for all kinds of other ideas about the human to be inserted. These ideas will be shaped, not just by neutral science, but also by cultural, social, political and economic forms of influence – by ideology. There is an even further distance to cover should we seek to fill the void between the compelling coloured images of electrical activity in the brain and the actual experience or feelings of the person, which remain even less accessible to forms of scientific empiricism.

or feelings of the person, which remain even less accessible to forms of scientific empiricism. Indeed, ‘neuroscience lets us down. Somehow, bursts of electricity in the wetware of the brain don’t seem adequate to the exquisitely structured mind that I, and you, have’. While contemporary neuroscience has access to technologies of which previous generations of philosophers, scholars and scientists could scarcely have dreamt, the technologies have located, not mind, only brains; indeed, a crucial

could scarcely have dreamt, the technologies have located, not mind, only brains; indeed, a crucial distinction is made since some neuroscientists claim that ‘mind is a process not a thing’. However, the pursuit of the ‘normal’ still remains strong in this new science. Allied disciplines which have constructed themselves upon deficit models of the human are likely to be attracted by the emerging knowledge, in particular those disciplines which are linked to processes that can lead to various

knowledge, in particular those disciplines which are linked to processes that can lead to various kinds of social exclusion – cultural, political or economic. Psychology, for example, will find the promise of revitalised accounts of the ideal human difficult to resist and the old psychopathologising tendency will then be waiting to reassert itself, to reinforce epistemological boundaries and to diminish the narrative accounts of persons to deficits. There are many difficulties remaining in

to diminish the narrative accounts of persons to deficits. There are many difficulties remaining in translations between neuroscientific accounts and the category, but there is also a need for vigilance, not least regarding the danger that the ‘textual manipulation of imaging texts, if without challenge, will permit an otherwise untheorised collapse from scan to diagnosis’.

‘Neuroscience is increasingly being called upon to build prescriptions about how to live’ and the tendency is for an expectation that contemporary science will be able to ‘reveal’ the disordered brain and to create models of the person in the forms of categories by comparison with some notion of the ideal human. There is thus a danger that neuroscientists in the future, as psychologists in the past, will merely create ‘a baseline definition of “normal” [which is actually] both a physiological

will merely create ‘a baseline definition of “normal” [which is actually] both a physiological and a social judgment’. Should this again prove to be the case, new ideals or models of personhood will be created from which future generations of young people, as those before, will be at risk of becoming medicalised and diagnosed, excluded and ‘othered’, that is, as imperfect humans. Any ideas we might have as to what is ‘normal’, therefore, need to be argued not only by neuroscientists but also by

have as to what is ‘normal’, therefore, need to be argued not only by neuroscientists but also by social scientists and, not least, I argue here, by those who will be at the receiving end of such theories. With this in mind I take the view that critical neuroscience could perform a useful function and, in particular, might usefully ‘renew(s) the possibility for critical commentators to be engaged with, rather than estranged from, laboratory science’. Indeed, ‘a comprehensive understanding of

with, rather than estranged from, laboratory science’. Indeed, ‘a comprehensive understanding of the nature of the human mind and behavior is impoverished without a theoretical and empirical approach that incorporates…multiple layers of analysis’.

FINAL REFLECTIONS FOR RESEARCH AND PRACTICE I have argued: 1) that there have been theoretical constraints upon the ways in which autistic mind and experience can be conceptualised; 2) that professional discourses (practitioner and research) have evolved on the basis of an incomplete and sometimes inappropriate kind of scientific activity; and 3) that the theoretical resources upon which professionals have been expected to base their work with young autistic people and their families have been

have been expected to base their work with young autistic people and their families have been limited because they have failed to engage with the quality of human experience. Neuroscience has been reminding us that processes of mind are beyond measurement, since they are ‘constructing qualities’. I argue that in relation to Jim and Tom it was more important that I remained committed to their qualities, not as autistic, but as human beings in shared moments of time and space, in their home or

not as autistic, but as human beings in shared moments of time and space, in their home or school. Damasio, Tallis, Rose and other neuroscientists have made explicit not only a distinction between brain and mind (as process), but also a connectivity between our brain and bodies – in mind. They point towards the importance of avoiding the pitfalls of a ‘neuroreductionism…[and want to ensure that] human beings are not thought of as identical with their brains’. There is a long tradition in

that] human beings are not thought of as identical with their brains’. There is a long tradition in philosophy both before Bergson (for example, Spinoza) and after (Gilbert Ryle and more recently Mark Rowlands) in which the study of what it is to be human has endeavoured to tolerate a sensory model that is intrinsically connected to our affective lives. To Bergson and Damasio there would be an umbilical cord between our emotionality and our processes of mind and a belief in a lived experience

cord between our emotionality and our processes of mind and a belief in a lived experience that eludes measurement through its existence in time and space. Bridget and Cary had known that their son, Tom, was suffering in class. As professionals we had not utilised theoretical resources which were sufficiently sensitive to respond to the parents’ belief that Tom was exhausted by his efforts to cope with the distress of existing in the time and space of his classroom. While direct communication

with the distress of existing in the time and space of his classroom. While direct communication was still difficult for Jim, during this particular observation he tolerated his sensory world and processed the feelings experienced during those moments of more conventional social interaction and shared attention. Jim was beginning to behave differently in response to his own experience, using spoken language to express his thoughts and feelings in relation to the time and space of his

using spoken language to express his thoughts and feelings in relation to the time and space of his experiential being. The professional mode adopted with these two boys was not one of technician or diagnostician but that of a theoretically inquisitive practitioner, resisting any mere busy-ness or utilitarianism. I argue that both practitioners and researchers need to be sensitive to matters of time, space and experience in order that any future work can be based on more sophisticated

of time, space and experience in order that any future work can be based on more sophisticated understandings of relational quality and of affective human personhoods. Approaches to critical autism and critical neuroscience could support the development of scientifically informed research and practice which does not shirk from the conundrum posed so eloquently by John’s experience of the classroom described at the start of this chapter and captured here by the neuroscientist:

There is an abyss between [our] knowledge and [their] experience that cannot be bridged scientifically.

INTRODUCTION In the medical literature, earlier diagnosis of autism and accompanied early intervention is uncritically equated with ‘better’ than late diagnosis and no intervention. The chapter will set out three reservations to the early diagnosis/ intervention paradigm. First, although the rationale for diagnosis given in these arguments is that intervention is essential for improved outcomes, the literature on effectiveness of early intervention for children with autism is far from

the literature on effectiveness of early intervention for children with autism is far from conclusive. Some methods seem to work for some children some of the time, but often at huge time investment. Methodologies of assessing benefits are frequently flawed. Finally, both the autism community and the scientific establishment have sometimes denounced previous interventions as inappropriate. Second, there are some studies that show that children with serious symptoms of autism may improve to

there are some studies that show that children with serious symptoms of autism may improve to subclinical levels as they mature without intervention. It is difficult to tell at very young ages which children will go on to have lifelong difficulties, and the younger the child, the more difficult it is to differentiate. Third, there are potential iatrogenic effects and other inadvertent negative effects from attaching diagnostic labels to children. The early diagnosis/intervention paradigm

effects from attaching diagnostic labels to children. The early diagnosis/intervention paradigm springs from the notion of ‘plasticity’, that there are sensitive periods of brain development early in a child’s life, and it is important to intervene before these windows have closed. However, the same notion of plasticity could be applied to any negative consequences of diagnostic labelling: an early label of autism may affect a very young child more. I will also briefly discuss the function of

label of autism may affect a very young child more. I will also briefly discuss the function of autism diagnosis from a parent’s point of view. To conclude, when interventions are not proven, and when iatrogenic effects of labelling are not disproven, the benefits of the early intervention paradigm for childhood developmental disorders should be questioned, at least until there is concrete evidence of real benefit.

RATIONALE FOR EARLY DIAGNOSIS OF AUTISM Early intervention and diagnosis for Autism Spectrum Disorder (here referred to simply as autism) has become a recognised research priority. The implicit assumption behind much

research is that the earlier a diagnosis of autism is made (in other words, the younger the child’s age when diagnosis is made), the better (Crais et al. 2006; Filipek et al. 2000). Early intervention aims to ameliorate development of symptoms of autism, so that intervention minimises the development of impaired communication, promotes social interaction and minimises repetitive behaviour in children. Language acquisition and the promotion of cognitive and functional skills are often secondary

Language acquisition and the promotion of cognitive and functional skills are often secondary goals. The early intervention paradigm is emphasised across many child health conditions, and for autism, the importance of early intervention is the consensus view. This quote from the book Overcoming Autism reiterates this point:

I can’t stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The ‘wait and see’ approach is detrimental to your child. Children with autism tend to avoid things that are difficult, and communication is difficult for them, so they avoid situations where they might be expected to communicate. As a result, they become more isolated and withdrawn. So it’s critical that you get a program started

a result, they become more isolated and withdrawn. So it’s critical that you get a program started right way. (Koegel and LaZebnik 2005, p.38)

Many autism studies have put early identification of autism as a core objective (Watson et al. 2007). Guidelines from health institutions and charities also push the early diagnosis/intervention agenda. For example, Autistica’s report One in a Hundred emphasises the importance of diagnosis at the youngest possible age, and promotes early intervention (Wallace, Parr and Herd 2012). Autistica is a charity which funds medical research to understand the causes of autism, improve diagnosis, and

a charity which funds medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions. Their report is fairly typical of policy guidelines released in the United Kingdom and United States. In her very thoughtful analysis McGuire (2013) describes how slow development and/or developmental delay of autism is framed as an underlying biomedical problem that must be corrected as early as possible as it threatens the productivity of neoliberal

problem that must be corrected as early as possible as it threatens the productivity of neoliberal societies. She shows how far the notion of early intervention as crucial has travelled into the public realm: in 2007, Starbucks released five million takeaway coffee cups across North America displaying a statement from Autism Speaks, a parent-led charity that aims to cure autism. The statement read as follows:

Every 20 minutes – less time than it will take you to drink your coffee – another child is diagnosed with autism. It’s much more common than people think, with one out of every 150 children diagnosed. Learn the early warning signs of autism, and if you’re concerned about your child’s development, talk to your doctor. Early intervention could make a big difference in your child’s future. (Autism Speaks 2007, cited in McGuire 2013)

McGuire argues that the statement works to produce the non-normatively developing child as non-valuable and, perhaps even, as non-viable in the contemporary market-driven economy. It certainly illustrates the point that early intervention is the received wisdom and accepted as imperative in the public domain.

The reason early diagnosis is recommended for autism in particular is connected to the concept of developmental plasticity. Plasticity only occurs during an age-limited developmental stage in the early life of the child when he/she has the ability to acquire a particular skill, which can influence later development (Dennis 2000). It is a well-established concept in the case of the acquisition of language and the development of the visual cortex, with both human and animal studies showing that

language and the development of the visual cortex, with both human and animal studies showing that limiting environmental stimuli leads to lack of brain development. Developmental plasticity means that children are attuned to learning; and generally speaking, younger children are more responsive, and the younger the child, the less fixed a developmental pathway may be. Neuroplasticity describes how experiences reorganise neural pathways in the brain. Long-lasting functional changes in the brain

experiences reorganise neural pathways in the brain. Long-lasting functional changes in the brain occur when children learn new skills. The concept of developmental plasticity is a conspicuous theme in child development, and it establishes an early time frame in which deterministic shaping of neural networks is carried out. After sensitive periods in development, plasticity diminishes as a result of changes in the structure or function of developing neural circuits. Language development, for

of changes in the structure or function of developing neural circuits. Language development, for example, undergoes a so-called ‘critical period’ between the ages of one and six years (White et al. 2013). A sensitive period in development is a similar, but less well defined by time, period which begins and ends gradually, and constitutes a period of maximum sensitivity to acquisition of social skills, language acquisition, and sensory and motor abilities. The idea of a sensitive period was

skills, language acquisition, and sensory and motor abilities. The idea of a sensitive period was popularised by many developmental psychologists and educators in the early twentieth century, including Maria Montessori in her influential book The Absorbent Mind, which is still in print (Montessori [1949] 2009). From birth until about the age of six, children become skilled at numerous activities without formal instruction. According to supporters of the idea of critical periods, this occurs

without formal instruction. According to supporters of the idea of critical periods, this occurs because it is very easy for children to acquire certain abilities during a specific period. Also, once a period is passed, the development of the brain has progressed past the point where that specific ability can be easily attained. After this, the ability must be formally taught, it will take effort to learn and will not be as readily acquired by the child (Knudsen 2004). Language acquisition is

to learn and will not be as readily acquired by the child (Knudsen 2004). Language acquisition is the classic example: children who are not exposed to language before a set developmental stage will miss the window of opportunity to acquire it (Snow and Hoefnagel-Höhle 1978). Likewise, an early child–parent attachment period is thought to be crucial for later social development of the infant (Pastor 1981). Research suggests that children who have not developed strong attachment as infants have

1981). Research suggests that children who have not developed strong attachment as infants have major difficulty with social skills and relationships later (Bohlin, Hagekull and Rydell 2000). Although Bowlby’s theory of attachment as a cause of autism (see Bettelheim’s ‘refrigerator mother’ theory, 1967) has now been discredited, early diagnosis and intervention for a child with autism is still seen as crucial. Autism is described by some as a ‘critical period disorder’ (LeBlanc and Fagiolini

seen as crucial. Autism is described by some as a ‘critical period disorder’ (LeBlanc and Fagiolini 2011). One underlying conviction is that intervention for autism should take place before critical age-dependent periods of development have passed and abnormal developmental pathways become fixed (Zoghbi 2003), hence, in this reading, early diagnosis is crucial.

Early intervention is a concept and form of practice that plays a key role in major public health, mental health, and educational policies in the UK and the USA. However, little attention has been paid to how cultural contexts change considerations of the ethics of early intervention. Early diagnosis is widely endorsed for autism because it is assumed that the younger the child, the more chances there are of succeeding with treatment. Treatments take the form of highly structured behavioural

there are of succeeding with treatment. Treatments take the form of highly structured behavioural programmes such as Applied Behaviour Analysis (ABA), Speech and Language Therapy, Occupational Therapy, the Picture Exchange Communication System (PECS), Alternative and Augmentative Communication (AAC), Sensory Integration Therapy and the school-based Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) method. The belief is that the earlier the diagnosis is

Communication Handicapped Children (TEACCH) method. The belief is that the earlier the diagnosis is made, the greater the chances of success in ‘normalising’ a child’s developmental trajectory, before windows of opportunity have closed.

RECENT TRENDS Over the last twenty years, the age at which autism diagnosis is made in children has been pushed earlier and earlier (Parner, Schendel and Thorsen 2008). One US study has shown the prevalence of autism increasing rapidly between 1997 and 2003, with a simultaneous drop in the mean age of children’s autism diagnosis (Liu, King and Bearman 2010). It is not uncommon for children as young as 18 months old to receive an autism diagnosis in the USA (Hertz-Picciotto and Delwiche 2009),

as 18 months old to receive an autism diagnosis in the USA (Hertz-Picciotto and Delwiche 2009), and an autism diagnosis at age two is not unusual in the UK (Jick and Kaye 2003). Some research now claims that babies as young as eight months old can be identified with symptoms of autism (Ibañez, Grantz and Messinger 2013), and other studies claim that children can be identified with autism aged six months, four months or even at birth (Teitelbaum et al. 1998). Teitelbaum and colleagues claim that

months, four months or even at birth (Teitelbaum et al. 1998). Teitelbaum and colleagues claim that early behaviour indicating autism ‘are present at birth and that they can be used to diagnose the presence of autism in the first few months of life’ (Teitelbaum et al. 1998, p.13982). They claim that their findings ‘indicate the need for the development of methods of therapy to be applied from the first few months of life in autism’ (Teitelbaum et al. 1988, p.13982). The first studies describing

first few months of life in autism’ (Teitelbaum et al. 1988, p.13982). The first studies describing how autism emerges during infancy were based on home videotapes recorded before a diagnosis of autism was made, for example based on early differences in social attention. Many have utilised non-blinded rating of children’s behaviours in the light of a known research diagnosis, a practice which is questionable (e.g. Maestro et al. 2002). Often studies use developmental screening tools such as the

(e.g. Maestro et al. 2002). Often studies use developmental screening tools such as the First Year Inventory, a retrospective parent-report questionnaire to identify infants at 12 months who might be at risk for autism. However, parents’ retrospective recall may be inaccurate as it could be influenced by later diagnosis (Russell et al. 2014). Frequently, children who are identified as at risk for autism by parents are invited for in-person diagnostic evaluations. Typically, findings of studies

autism by parents are invited for in-person diagnostic evaluations. Typically, findings of studies that seek to identify the early signs of autism are described as ‘promising’ (e.g. Dawson 2008) and advocate early screening as a way to identify infants who are ‘at risk’ for a diagnosis of autism (e.g. Woods and Wetherby 2003). Landa (2008, p.138), describes how ‘early detection of – and intervention to treat – autism is crucial because it is likely to lead to an improved outcome’. An improved

to treat – autism is crucial because it is likely to lead to an improved outcome’. An improved outcome for autism would be an increase in social-communication ability which is seen in a group who are given the specific intervention versus less improvement in the group who are not. Some US organisations are now pushing for population-wide screening for autism in children as young as 18 months. For example, the American Academy of Pediatrics (2010) recommends that physicians routinely screen for

example, the American Academy of Pediatrics (2010) recommends that physicians routinely screen for autism at this age. These calls are apparently well supported by research, which is sometimes financed by parent-led charities. For example, the charity Autism Speaks provides financial backing for: new methods for early detection and more effective treatments… Prevention will entail detecting infants at risk before the full syndrome is present and implementing treatments designed to alter the

at risk before the full syndrome is present and implementing treatments designed to alter the course of early behavioural and brain development. (Dawson 2008, p.775)

The underlying assumptions made in much of the early diagnosis literature seem to be:
1. There is a fixed core disorder called autism that is present from birth and can be correctly identified soon after birth.
2. Treatment and amelioration of symptoms is a desirable outcome. 3. Early intervention is effective. 4. Those children identified early as autistic will not ‘get better’ without intervention.
5. Diagnosis itself will not have a negative impact on children and their families.

5. Diagnosis itself will not have a negative impact on children and their families.
I have caveats to the last three of these assumptions. The first two are outside the scope of this chapter but have been discussed elsewhere in this book.

Caveat 1: Is early intervention for autism effective? The rationale for early diagnosis of any child developmental disorder assumes that once children are correctly identified with an underlying disorder, appropriate interventions can be put into place to treat symptoms of that disorder (Committee on Children with Disabilities 2001). From a medical perspective, the goals of treatment for autism and other developmental disabilities are delineated clearly by several guidelines. The US

autism and other developmental disabilities are delineated clearly by several guidelines. The US paediatrics guideline cited above describes the goals of autism intervention thus: To improve the overall functional status of the child by promoting the development of communication, social, adaptive, behavioral, and academic skills. (American Academy of Pediatrics 2010, p.1225). Interventions for autism are not normally pharmaceutical but generally take the form of behavioural interventions and,

are not normally pharmaceutical but generally take the form of behavioural interventions and, later in life, increased educational resources. ‘Symptoms’ of autism, of course, are behaviours also. Autism diagnosis is often framed as a way for parents and children to access important health and educational services and other forms of support (Russell and Norwich 2012). Mansell and Morris (2004) provide a useful summary of typical interventions and services that are adopted after an autism

provide a useful summary of typical interventions and services that are adopted after an autism diagnosis is given in the UK. These include extra educational support in the classroom or special schooling, parents’ support groups, speech and language therapists, school psychologists, psychiatrists, respite care and focused access to information such as books and academic journals. Special units and schools were rated as the most useful source of support. Early intervention models are normally

and schools were rated as the most useful source of support. Early intervention models are normally intensive, requiring concentrated one-to-one work of adults with a child for up to forty hours a week (Myers and Johnson 2007). Rigorous randomised controlled trials (RCTs) to assess such early interventions are rare. One exception was a RCT of a parent-mediated communication-focused intervention, which found that there was no significant decrease in autism symptoms for the group assigned to the

which found that there was no significant decrease in autism symptoms for the group assigned to the intervention (Green et al. 2010), although facets of children’s relationships with parents did improve. Another widely cited RCT for early intervention that tested the Early Start Denver Model (ESDM), an intensive behavioural programme for toddlers, found that children who received the ESDM showed significant improvements in IQ and adaptive behaviour (Dawson et al. 2009). Even in this case, core

significant improvements in IQ and adaptive behaviour (Dawson et al. 2009). Even in this case, core autism symptoms did not always improve.

The rationale often given for diagnosis is that intervention is essential for improved outcomes. However, the literature on effectiveness of early intervention for children with autism is far from conclusive. Some methods seem to work for some children some of the time, but often with huge time investment by parents or therapists. Overall, there is a lack of consensus on the most successful intervention strategies (Feinberg and Vacca 2000). Several systematic reviews for early intervention

strategies (Feinberg and Vacca 2000). Several systematic reviews for early intervention have concluded there is no established ‘cure’ for autism. A comprehensive systematic review published in Pediatrics established that there is little evidence for positive effects of pharmaceutical or behavioural interventions for autism (Warren et al. 2011). They found an overall lack of evidence that autistic-like behaviours of young children improved substantially after diagnosis and subsequent

autistic-like behaviours of young children improved substantially after diagnosis and subsequent intervention: One powerfully replicated finding across the available literature is that many children who receive early intensive intervention, across methodologies, will not demonstrate dramatic gains in social, cognitive, adaptive, and educational functioning. (Warren et al. 2011, p.e1309). Other reviews have confirmed that the field does not yet have interventions that meet the criteria for

reviews have confirmed that the field does not yet have interventions that meet the criteria for well-established and efficacious treatments (Francis 2005). Warren and colleagues’ systematic review of early interventions concluded that the available evidence suggests that some interventions might work for some subgroups of children, but which children these will be remains under-researched, so that it would currently not be possible for a clinician to confidently recommend a particular

so that it would currently not be possible for a clinician to confidently recommend a particular treatment for a particular child. Early intervention research in autism is also beset by methodological concerns; the strength of the evidence base is insufficient to low. Overall, the evidence for effectiveness of early intervention is weak (Myers and Johnson 2007). Despite such concerns, reviews usually conclude that there are enough positive outcomes to warrant some form of intervention and this

conclude that there are enough positive outcomes to warrant some form of intervention and this is translated into policy and guidance. The US National Institute of Health, for example, emphasises that ‘the urgency of early identification and treatment puts the quest for infant screening and diagnostic instruments at the forefront of our priorities’ (Bristol-Power and Spinella 1999, p.435). What is not often acknowledged is that early interventions for autism are high-cost both in terms of

is not often acknowledged is that early interventions for autism are high-cost both in terms of financial and time commitment and may be exhausting for parents and children alike, especially when a better outcome remains uncertain.

There seems to be a disjunction between the level of actual evidence for effectiveness of early interventions for autism, and what I would term as the rhetoric of early intervention that is frequently espoused. Perhaps it is a question of interpretation – glass half full or glass half empty, as argued by Charman (2011). Early intervention research has not found a ‘cure’ for autism, despite decades of trying. Indeed, in the recent past some types of intervention for autism have been denounced

of trying. Indeed, in the recent past some types of intervention for autism have been denounced as cruel and unsuitable by members of the autism community, including forms of Applied Behaviour Analysis (Dawson 2004). Therapy for very young children can involve between 25 and 40 hours a week of intensive training to ‘maintain desirable adaptive behaviours’ (Myers and Johnson 2007, p.1164). Other forms of intervention, once mainstream, are now well-established as having been inappropriate.

forms of intervention, once mainstream, are now well-established as having been inappropriate. Holding therapy, for example, has been shown to be potentially physically harmful to children (Pignotti and Mercer 2007). It is hard to predict whether all the autism interventions that are utilised today will be acceptable to future generations.

Caveat 2: Improvement with no intervention? A second counter-argument to early diagnosis is that in early childhood behavioural traits display huge variability from child to child (and from situation to situation). Thus it is difficult to distinguish a two-year-old who cannot speak because s/he may continue to display symptoms of autism later in life from a two-year-old that cannot speak because he is slower and will catch up later (Landa 2008). According to some, 30 per cent of children who

he is slower and will catch up later (Landa 2008). According to some, 30 per cent of children who are given diagnosis at age two no longer meet criteria for ASD diagnosis at age four (Turner and Stone 2007). My own work has compared two groups of children with severe autistic-type traits measured at age two; one group who received an autism diagnosis later, and the other who did not (Russell et al. 2012). Children without an autism diagnosis did better on a range of outcomes as adolescents,

al. 2012). Children without an autism diagnosis did better on a range of outcomes as adolescents, which suggested it was difficult to distinguish pre-school age children who have autistic-like traits but improve, without having been diagnosed, from those who go on to develop lifelong impairment. This shows that children with serious symptoms of autism may improve to subclinical levels as they mature without intervention. In these cases, ‘wait and see’ may be the best strategy. Overall, the

mature without intervention. In these cases, ‘wait and see’ may be the best strategy. Overall, the evidence of the age at which autism can be reliably diagnosed is unclear (Stone et al. 1999). The psychiatry and medical literature centres on how reliably an early diagnosis can be made, and the accuracy of screening checklists as tools. Early diagnosis leading to better treatment outcomes is the mantra, but even if this were true, accurate early diagnosis of autism is also more difficult, given

but even if this were true, accurate early diagnosis of autism is also more difficult, given that children vary more widely in their level of development at younger ages. There is great uncertainty about future trajectories when screening procedures for autism begin before age two (Rutter 2006).

Caveat 3: Could diagnosis influence outcome in a negative way? Once told about a specific childhood diagnosis, it has been shown that perceivers tend to interpret behaviour in the light of the diagnostic frame (Fogel and Nelson 1983). But little work has been done that disentangles the perceivers’ negative expectancies that are based on an early ‘autism’ diagnostic label, and expectancies based on the actual behaviours of the child. Concrete evidence that labelling of a child – putting a name

on the actual behaviours of the child. Concrete evidence that labelling of a child – putting a name to a condition, or in this case giving an early autism diagnosis – could potentially have a negative or positive impact is scarce. I now review some research in self-fulfilling prophesies (SFP) in older children, and some research from expectancy bias studies in social psychology and education. Some of this work is very dated, and some more recent, but it does suggest that iatrogenic effects of

of this work is very dated, and some more recent, but it does suggest that iatrogenic effects of early autism diagnosis are at least possible. Both SFP and expectancy bias studies are founded on labelling theories that were often touted by sociologists, radical psychiatrists and psychologists in the 1960s and 1970s. Edgerton (1967) pointed out that nearly all of the enormous amount of literature in the field of cognitive impairment was from the perspective of social workers, psychiatrists,

in the field of cognitive impairment was from the perspective of social workers, psychiatrists, psychologists and other medical specialists. In such circumstances, he elucidated, people with intellectual disabilities are only ever professionally ‘known’ in terms of their ‘disabilities’ or ‘abnormalities’. This, then, informs the way that such people are perceived and treated, leading to objectifying them. The anthropologist Goode (1984) also argued that the focus on labels does not allow entry

them. The anthropologist Goode (1984) also argued that the focus on labels does not allow entry into the world of an intellectually disabled person. He attempted to eradicate the professional distance between himself and his subjects. He shunned research techniques that objectified children as research subjects, and developed a relationship with a severely intellectually impaired deaf/blind girl on her terms. Recently researchers have attempted to address the issue of who is allowed into the

on her terms. Recently researchers have attempted to address the issue of who is allowed into the conversation about childhood disability by focusing on children’s voices (Singh 2013) or stories (Curran and Runswick-Cole 2013).

Research has documented SFPs in both the lab and the real world. Rosenthal and Lawson told students who were training rats to run round a maze that their animals were either clever or stupid. Although rats were actually randomly assigned, the ‘clever’ rats learned the maze quicker. Students’ beliefs about their rats were self-fulfilling (Rosenthal and Lawson 1964). In Rosenthal and Jacobson’s (1966) influential, much criticised yet highly cited, ‘Pygmalion’ study the researchers posed as

(1966) influential, much criticised yet highly cited, ‘Pygmalion’ study the researchers posed as educational psychologists, went to a school and tested a class of pupils. They then told the teacher that 20 per cent of these pupils were ‘intellectual bloomers’: potentially brighter than the others, despite these 20 per cent actually being selected quite randomly. When the children were retested a year later the ‘bloomer’ pupils really did do better in intelligence tests. Once an expectation is

year later the ‘bloomer’ pupils really did do better in intelligence tests. Once an expectation is set, they argued, even if it isn’t accurate, people tend to act in ways that are consistent with that expectation. The result is that the expectation comes true. The work of Rosenthal and his colleagues provoked a flurry of work on SFPs, and in 1978 Rosenthal and Rubin reviewed 345 separate studies dealing with the phenomenon, which confirmed its existence. The effects of SFPs have been noted in

dealing with the phenomenon, which confirmed its existence. The effects of SFPs have been noted in many settings, including in the classroom amongst stigmatised groups (Jussim and Harber 2005). The expectancy of worse outcomes for a target group has been also shown to be self-fulfilling. Teacher perceptions were shown to predict achievement more strongly for low achievers than for high achievers (Madon, Jussim and Eccles 1997). Rist (2000) showed how a pre-school teacher placed children in

(Madon, Jussim and Eccles 1997). Rist (2000) showed how a pre-school teacher placed children in reading groups that reflected their class backgrounds, and how subsequent teacher expectancy mediated learning. Bogdan (1982) drew on work in semantics to suggest that people labelled ‘mentally retarded’ were covered with a ‘cloak of incompetence’ that is virtually impossible to discard. They thus become prisoners of the explicit and implicit meanings attached to these labels. Bogdan argued that the

prisoners of the explicit and implicit meanings attached to these labels. Bogdan argued that the label ‘mentally retarded’ creates a barrier to understanding people on their own terms. It prevents others from seeing and treating people so defined, as human beings with feelings, understandings and needs. Such work was instrumental in the replacement of derogatory terms with politically correct language that attempts to refer to disabled groups in a more positive way. Fogel and Nelson (1983)

language that attempts to refer to disabled groups in a more positive way. Fogel and Nelson (1983) found that disability labels could bias teachers’ behavioural checklist scores. In their ingenious study, teachers who watched a video of a child and were told about the child’s learning difficulties attributed more characteristics of cognitive impairment to the child than teachers who were not aware of the diagnostic label for the same child.

A comprehensive review of expectancy bias and stigma at the beginning of this century only identified two studies looking specifically at expectancy bias in relation to childhood diagnostic labelling (Jussim et al. 2000). In these experiments, boys were paired as partners and one in each pair was led to believe that the other had an attention deficit hyperactivity disorder (ADHD) diagnosis. Partners perceived ADHD-labelled boys as having more symptoms, and they talked less to them, were colder

perceived ADHD-labelled boys as having more symptoms, and they talked less to them, were colder and gave them less credit in shared tasks. The boys with bogus ADHD labels felt that their partners were ‘meaner’ to them than the non-labelled boys did. This has interesting implications for autistic children, where social communication may be a problem, indicating that the diagnostic tag actually made attempts at social communication less likely. However a follow-up study showed that the effect of

attempts at social communication less likely. However a follow-up study showed that the effect of actually being diagnosed as ADHD had a far greater effect than being incorrectly labelled by experimental manipulation, even when the perceivers were unaware of the diagnostic labels. This was interpreted as showing that the actual behaviour of a boy had a far greater effect than a bogus label (Harris et al. 1992). A more recent study with potential implications for diagnostic labelling of children

et al. 1992). A more recent study with potential implications for diagnostic labelling of children with ADHD-type behaviours was conducted by Sayal and colleagues (2010). These researchers conducted a randomised controlled trial where one group of children who displayed high levels of inattention/hyperactivity were identified as having high probability of having ADHD to teachers. A second group with equivalent symptoms were not identified to teachers. The researchers found that children in the

equivalent symptoms were not identified to teachers. The researchers found that children in the ‘identified to teachers’ group were twice as likely as the other group to have high scores in inattention/hyperactivity at follow-up five years later. The authors discuss labelling theory and teacher expectancy as one possible reason for these outcomes, although another could be reporting bias. Applied to autism, labelling theory hypothesises that diagnosing and labelling a child as autistic will

to autism, labelling theory hypothesises that diagnosing and labelling a child as autistic will lead to shifts in expectancy and attitudes of those in contact with the child, as well as altering the self-identity of the child, and this will serve to reinforce the ‘abnormal’ autistic behaviour. Labelling theory has been influential in social policy and the practices of schools and asylums. Today, in the UK, psychiatric training still cautions professionals about the dangers and consequences of

in the UK, psychiatric training still cautions professionals about the dangers and consequences of labelling patients too early, while educational research into the impact of streaming children has informed the development of the comprehensive system in Europe (Slattery 2003). The early autism label, then, could produce negative perceptions and reduced expectations in parents, teachers, peers and even, later, in the children themselves, leading to self-fulfilling outcomes. Meta-analysis of all

even, later, in the children themselves, leading to self-fulfilling outcomes. Meta-analysis of all work on SFPs found effects, real but small, of about 0.1–0.2 in terms of correlation or regression coefficients (Jussim et al. 2000). However, the size of the effect varied in different situations and contexts. Although SFPs are real, there are probably more powerful factors at work in maintaining problematic interactions for families whose child has autism-type behaviours than an autism diagnosis

interactions for families whose child has autism-type behaviours than an autism diagnosis itself. My point is, however, that research does suggest that the treatment of children with an autism diagnosis by the health professionals involved in the child’s care is likely to be influenced by his or her autism diagnosis. This treatment by the professional, in turn, may, in some way, influence outcomes. Although adverse labelling effects from autism diagnosis are certainly not proved, neither are

Although adverse labelling effects from autism diagnosis are certainly not proved, neither are they disproved. If autism is the lens through which a child is viewed from an early age, and there is aforementioned plasticity, the malleable period when the young child is particularly sensitive to intervention will also mean they may be equally sensitive to potential negative impacts of labelling-based interactions on their development.

WHAT DO PARENTS GAIN FROM THEIR CHILD’S EARLY AUTISM DIAGNOSIS? In her detailed analysis of a cross-cultural study of ADHD, Malacrida (2004) notes a tradition of cultural resistance to labelling in the UK, in contrast to the Canadian medicalised model. She argues that this reflects the influence of the anti-psychiatry movement in the UK. A picture emerges of a trade-off between potential positive and negative outcomes, as parents weigh up the likelihood of risks and benefits before making a

and negative outcomes, as parents weigh up the likelihood of risks and benefits before making a decision to get a diagnosis. We carried out a study interviewing parents of children who had either pursued or rejected an autism diagnosis for their child (Russell and Norwich 2012). Parents faced considerable dilemmas when confronted with the prospect of an autism diagnosis. Although diagnosis may lead to services, respite and a partial explanation for a child’s behaviour, parents also considered

to services, respite and a partial explanation for a child’s behaviour, parents also considered the potential devaluation, stigma and rejection that may result. Diagnosis may lead to services, but often does not, thus often operates as a ‘promise’ that may or may not be fulfilled. A diagnosis can vindicate and blame, can legitimise or stigmatise, as Jutel and Nettleton (2011) point out. The autism diagnosis therefore represents a double-edged sword for many parents. An early autism diagnosis,

diagnosis therefore represents a double-edged sword for many parents. An early autism diagnosis, or indeed autism diagnosis at any point in childhood, allows others to deploy biomedical explanations for a child’s behaviour (Farrugia 2009). Grinker (2008), the father of an autistic child, compared approaches to autism across cultures as his family moved from Korea, to South Africa and India. He found that the biomedical definition was a useful tool to explain his daughter’s behaviour in order to

that the biomedical definition was a useful tool to explain his daughter’s behaviour in order to deflect culturally situated definitions. For example, autistic symptoms might be attributed to demonic possession in some cultures. His work demonstrates that the deployment of the biomedical explanation by the parent is in part a response to the cultural context that the child inhabits. Grinker (2008) also wondered whether an autism diagnosis is sometimes more for the parent’s needs rather than the

also wondered whether an autism diagnosis is sometimes more for the parent’s needs rather than the child’s, enabling the parent to feel they are doing something constructive to help – a point made by more forcibly by Fitzpatrick (2008). Singh (2004) elaborates on the impact a diagnosis can have in shifting attribution of behaviour – from mother-blame to brains – even going so far as to describe the ‘sacrifice’ of the son (via ADHD diagnosis and treatment) to protect the mother.

CONCLUSION Diagnostic labelling is sometimes treated as if it were ‘good’ or ‘bad’. Some scholars have seen labelling as an unnecessary and wholly destructive process. In my view, as in that of Riddick (2002), there are many aspects to labelling, both positive and negative. Potential positive outcomes of diagnosis are appropriate and helpful treatment, and alteration to the environment, together with obtaining better resources through funding and legislation. These can be offset against

with obtaining better resources through funding and legislation. These can be offset against potential negative outcomes. Quicke and Winter (1994) adopt an interactionist perspective to show that labelling can lead to discrimination or positive outcomes depending on the type of label and its context, and the tensions between these effects. However, any balance between good and bad vis-à-vis early autism diagnosis does not seem to be reflected in the literature. A cursory glance at the

early autism diagnosis does not seem to be reflected in the literature. A cursory glance at the intervention literature and that on screening and the development of diagnostic tools, all burgeoning areas of autism research, reveals no questioning of the overwhelming benefit of early diagnosis and intervention. ‘The earlier intervention can begin, the better the outcome’ (Woods and Wetherby 2003, p.180) is typical of the assumptions found in both academic and lay literature. This assertion of

p.180) is typical of the assumptions found in both academic and lay literature. This assertion of benefit seems to me to be founded on fairly flimsy evidence. Methodologies for assessing effectiveness of early interventions are frequently flawed. There is no robust data favouring one approach over others. While some interventions that support social skills do have some empirical support, for example the Early Start Denver model (Dawson et al. 2009), there is a lack of consensus on the most

example the Early Start Denver model (Dawson et al. 2009), there is a lack of consensus on the most successful intervention strategies. Some approaches work for some children, in controlled settings, but it is not possible to make predictions about efficacy for all children diagnosed with autism. Al-Qabandi, Gorter and Rosenbaum (2011) point out that if long-term outcome is not modified, emphasis on the importance of early diagnosis and intervention for autism may be misplaced. Early diagnosis

on the importance of early diagnosis and intervention for autism may be misplaced. Early diagnosis is essential, it is argued, so that diagnosis is made during a critical period in a child’s life when the child is more sensitive to environmental influences or stimulation than at other times during his/her life. However, this notion of developmental plasticity could also be applied to any negative aspects of labelling, and even potential adverse effects of very early intensive behavioural

aspects of labelling, and even potential adverse effects of very early intensive behavioural training. I would argue that ‘the early diagnosis imperative’ has become a form of dogma in autism intervention research, and to some extent in policy and practice. As time passes, more and more children are being diagnosed with autism and the earliest age of autism diagnosis continues to drop. When the effects of intensive, early interventions are not conclusively known, and when iatrogenic effects of

of intensive, early interventions are not conclusively known, and when iatrogenic effects of labelling are not disproven, in my view the benefits of early diagnosis/intervention for autism should be scrutinised in more depth before becoming accepted practice.

INTRODUCTION All new knowledge comes from people on the margins and they tend not to be from within institutional/ised knowledge and resources. (Whitfield and Simon 2014, p.24)

In this chapter, I propose how, as professionals, we need to shift our skills from diagnostic activities to relational curiosity to develop collaborative ways of conversing with people who have been diagnosed with Asperger Syndrome and others in their networks. Through immersing ourselves in dialogue with people and their social and professional networks, we can bring forth evidence of people with Asperger Syndrome having unique and useful expertise, which can play a part in resolving concerns

Asperger Syndrome having unique and useful expertise, which can play a part in resolving concerns and improving communication between those in their networks. Not only is it socially productive, but it is also ethical for professionals to shift their focus from an exploration of ‘mind’, as commonly believed to exist solely within an individual person, to the relational contexts so influential on what we are constructing with each other through talk and how that shapes what is able to be

on what we are constructing with each other through talk and how that shapes what is able to be recognised and developed. By foregrounding dialogue over diagnosis, we see how experimenting with user-friendly talk can provide opportunities for symptoms and features of high-functioning autism/Asperger Syndrome (Wing 1981; Gillberg 1991) to be understood as meaningful communications in which the ‘disabled’ person is experienced as able and enabling. The individualised account of the person having

person is experienced as able and enabling. The individualised account of the person having been diagnosed as having Asperger Syndrome is exchanged for descriptions of an interactive social system. I will illustrate how we can relocate ‘mind’ from the cognitive brain to the social opportunistic space created between people.

RELATIONAL OPPORTUNITIES ‘So, you take this case and I will make notes and we can discuss it afterwards. Okay?’ The supervisor takes herself behind the one-way screen and the nervous trainee clinical psychologist goes to fetch the family to the consulting room. Once back in the room, the psychologist quickly gives up on conversation with the child suspected of having Asperger Syndrome who gives responses not apparently connected to her questions. Instead, she asks the parents questions about

responses not apparently connected to her questions. Instead, she asks the parents questions about the child’s physical, emotional and social history going back to birth. She fends off questions from the child which she feels are inappropriate and distracting and completes her information gathering exercise. After a break to discuss the case with her supervisor, she negotiates spending some time alone with the child and proceeds to conduct some tests, one of which is the Sally–Anne test. At the

with the child and proceeds to conduct some tests, one of which is the Sally–Anne test. At the end of the session, the trainee says to the parents that she will let them know the outcome of the assessment and says a nice goodbye to the child. The trainee and her supervisor agree that the child could be diagnosed as having Asperger Syndrome and they arrange for a diagnostic letter to go out to the parents and for the parents to be invited to a group for parents with children who have Asperger

parents and for the parents to be invited to a group for parents with children who have Asperger Syndrome. (Extract from composite diagnostic interview)

So what did we hear from the parents in this diagnostic interview? We heard that mealtimes and bedtimes are hell; that they are worried about neglecting other children in the family; that they are arguing with each other about how best to respond to the child in question; that they are concerned with how the school is responding to their child; and what the neighbours must think. But what we end up with is a report focused on the child with parental information being lined up to reinforce a

up with is a report focused on the child with parental information being lined up to reinforce a story of an individual with cognitive and communication difficulties. The family is seen as a victim of unfortunate circumstances and offered information and advice to cope with their child. The professional system, with its limited cognitive framework, fails to see that the family is a system struggling with communication challenges and that it is resourceful, creative and open to collaborative

with communication challenges and that it is resourceful, creative and open to collaborative approaches. There is no expectation that the family can teach the professionals anything. They provide supporting information for diagnostic purposes. The family is shuffled into a passive service ‘user’, advice-recipient position. There is no consideration that the family may be able and interested in sharing or creating knowledge with the professional system, or that they could be part of the

in sharing or creating knowledge with the professional system, or that they could be part of the knowledge innovation for resourcing the wider community. The problems parents and children want help with occur almost exclusively in the context of relationships. Communication difficulties are the most common presenting concern in therapy. Parents want to talk about how to manage mealtimes, changes of routine, arguments between family members, co-parenting communications, dealing with the frequent

routine, arguments between family members, co-parenting communications, dealing with the frequent fall-out from school and other ‘Now what?’ episodes.

AREAS OF SPECIAL INTEREST AS RELATIONAL SYSTEMS Systemic lines of inquiry have been successful when treating the child’s area of special interest as a resource (Simon 2004). For a start, it is the one thing that is likely to engage the young person with a diagnosis of Asperger Syndrome: ‘Their special interest is often their sole topic of conversation. Asperger individuals seem to love talking about their interest, regardless of whether one has heard it all before’ (Frith 1991, p.11). Whether

their interest, regardless of whether one has heard it all before’ (Frith 1991, p.11). Whether one has heard it all before is not simply to do with repetition by the person with the interest. It is matter of how others listen, understand and engage with the conversation. Obsessive behaviour of the symptom-spotter – and here I am talking about the diagnostic clinician – results in lost opportunities to hear about relational functioning within an area of special interest. This can also transfer

to hear about relational functioning within an area of special interest. This can also transfer itself to parents emulating what the professionals consider to be good practice. A person with an area of special interest is likely to have in-depth knowledge about complex relational activities, which make up communicating systems. Talking about them creates and brings forth new ways of relational being and relational knowing. Exploration of the area of special interest of the child diagnosed as

being and relational knowing. Exploration of the area of special interest of the child diagnosed as having Asperger Syndrome might bring forth a description of a meaningful, communication system. By understanding the area of special interest as such a system, the therapist and family can be invited to communicate at times with each other through the metaphor of the area of special interest. This system might be useful in generating a language to describe the workings of that family, which all

system might be useful in generating a language to describe the workings of that family, which all family members can use. This may facilitate and help understand processes of communication, change and what makes a difference. Compare these two conversations:

Example 1 Parent: The teachers tell him off because he charges across the playground and doesn’t stop in time. Then he crashes into one of the younger children and hurts them. And he gets in trouble.

Professional: What game were you playing when you were running so fast? Will: The Sir Nigel Gresley is an A4 Pacific locomotive 4468. Parent (to professional): He’s train mad. Parent (to child): You can’t be a train in the playground. You will crash into people like you did into that young child. And hurt them.

Professional: Did you see the other child cry? Will: It broke the record in 1938. It went at 126 miles an hour. Professional: When you crashed into the little girl, what did she do? Parent: She cried, didn’t she? Because you bumped into her. Will (in flat monotone voice): She fell over. So what is happening here? The professional is asking about perception, noticing and trying to activate the child’s cognition as though it can be awakened through noticing questions. The professional is in a

child’s cognition as though it can be awakened through noticing questions. The professional is in a bind. On the one hand, they are seeing evidence of fixed characteristics typical of Asperger Syndrome: lack of cooperation in difficult conversations, possible cognitive difficulties, apparent inability to imagine and empathise with another person and so on. On the other hand, the professional, like the parent, is trying to effect change with those same, apparently unmovable features. And nothing

the parent, is trying to effect change with those same, apparently unmovable features. And nothing new emerges, so reinforcing the story of fixed characteristics. What is fixed or repetitive is the pattern of communication between those in the room. Behind this pattern is the contradictory belief that the professional will be able to change the fixed problematic behaviours of the person with Asperger Syndrome.

Let’s look at another excerpt in which the professional shifts their approach and becomes curious about the relational coordinations between parts of the system.

Example 2 Professional: So how does the Sir Nigel Gresley get to go that fast? Will: Its engine. Professional: Does it just go like that immediately or does it build up speed? Will: Builds up speed. Professional: How does it build up speed? Can you tell me how it all works? I am interested to know. I like steam trains but I don’t know that much about them.

Will: Well, it doesn’t just start going at 128 mph. Professional: Okay. Will: It depends on how much coal goes into the furnace. Professional: What does the coal do in the furnace? Will: It heats the water to make steam, which makes the engine go faster. Professional: How does the fireman know when to put coal in to the furnace? Will: The driver tells him. Professional: And what happens when the driver wants the train to slow down? Will: The train has to reduce its steam and apply the brakes.

driver wants the train to slow down? Will: The train has to reduce its steam and apply the brakes. Professional: How does the driver let the fireman know to put on less coal to make less steam?

Will: He tells him. Professional: How come the fireman does as he is told? Will: He just does. Or the train would crash. Professional: Okay. So they don’t want the train to crash. And who tells the driver how fast to go?

Will: The signals. Professional: So who works the signals? Will: Outside York, there are seventeen signal boxes. We’ve got one near us. Professional: And how do the signalmen know when to switch the levers? Will: It depends. It could be to make sure the train goes in the correct direction at a junction or it may be to avoid a collision especially on single tracks where they need to use sidings for trains to pass each other safely.

Professional: Yes, I see. Why does the train driver agree to follow the rules of the signals?
Will: Well, they would derail if they didn’t slow down and crash into another train.
Professional: And if they derailed? Will: It takes four cranes to get one engine back onto the track. We saw it up in Shap.

Professional: Do people sometimes get hurt? Will: Yes, if they are carrying passengers. Professional: And why do drivers sometimes hoot before a crossing? Will: To warn pedestrians and cars. Professional: Of what? Will: Of a train coming… Professional: So they don’t go on the tracks? Professional: And what would happen if they didn’t hoot? Will: There would be risk to life and limb. Professional: You know a lot about how things work, how train drivers and fireman and signalmen all work together

You know a lot about how things work, how train drivers and fireman and signalmen all work together to get places and keep people safe, don’t you?

Parent: I guess when you are charging about the playground, you have to be the driver, the fireman and the signalman all in one! It’s great hearing you talk about trains in this way. You know so much.

Several things appear to be going on here: 1. The child’s answers start cautiously and appear to confirm non-sequitur responses typical of Asperger Syndrome but this behaviour changes when the professional changes their behaviour. The child starts to see there are other forms of talk on offer than being required to change or being tested.

2. In this excerpt, the professional repositions herself as a learner. She listens and asks as if for the first time, without trying to create any evidence. The repositioning by the professional brings forth a story of the person with Asperger Syndrome as having knowledge and expertise.

3. This knowledge and expertise is about the moving parts of a communicating, interactive system with a feedback loop. The narrative describes a relationally responsive system (train, driver, fireman, signalman, signals, pedestrians, passengers) in which all the component parts/people are cooperative and sensitive to communications. Conversational participants have to recalibrate their expectations and learn to leave their expectation of hearing repetitive, decontextualised facts so they can be

and learn to leave their expectation of hearing repetitive, decontextualised facts so they can be receptive to noticing a narrative of a system at work in the area of special interest.

4. The knowledge and expertise of the child is clearly not simply a list of decontextualised facts. The child demonstrates both contextualised knowledge and hypothesising abilities. A coherent narrative is made visible by having an interested enquirer.
5. The parent has an unusual experience of not feeling bored by the repetitive nature of the area of special interest and leaves with increased admiration for their child’s abilities.

6. The professional and parent are careful not to rush into advice giving and making connections to the playground activity which might well have alienated the child from collaborating in the conversation further. But they are now equipped with a meaningful metaphor which is of immediate interest to the young person and which they will be able to draw on further in future conversations.

Areas of special interest often contain a communicating system between the characters or component parts. These areas of special interest often seemed to be connected to a subject in which there is a system at work, such as trains, computers and electricity. Within these cybernetic systems are feedback loops, mechanisms for managing cyclical or unusual events, rule-bound and rule-creating ways of being.

By foregrounding relational curiosity, the area of special interest ceases to be constructed as symptomatic of an embodied condition and instead becomes a social opportunity dependent on others becoming engaged in understanding and meaning-making. The area of special interest might be used both by the person diagnosed as having Asperger Syndrome and by others close to him as a means through which to connect, to communicate: I act not simply ‘out of’ my own plans and desires, unrestricted by

to connect, to communicate: I act not simply ‘out of’ my own plans and desires, unrestricted by the social circumstances of my performances, but in some sense also ‘in to’ the opportunities offered to me to act, or else my attempts to communicate will fail or be sanctioned in some way. (Shotter 1989, p.144). When exploring a person’s area of special interest in detail, it is common for friends and families to become totally engrossed – as if for the first time of hearing – and often elaborate

families to become totally engrossed – as if for the first time of hearing – and often elaborate with questions of their own. Viewed in this way, rather than listening for sameness, we can listen for difference with all the novelty that a first hearing brings (Shotter 2008b). We immerse ourselves within the area of special interest and take an alongside position with the other speakers. We approach the subject with openness and wonder. We surrender our preconceived knowing and, with it, the

the subject with openness and wonder. We surrender our preconceived knowing and, with it, the inevitable about-ness position which sites us outside of the others’ world, so scuppering the possibilities of new ways of knowing how to go in the conversations. Within a systemic social constructionist framework, the child’s special area of interest could be thought of as a narrative or collection of connecting narratives – as a way of languaging – and therefore as a potential resource to the

of connecting narratives – as a way of languaging – and therefore as a potential resource to the therapeutic process and to the family or other social relationships. An important contextualising factor in systemic therapy would involve understanding how family members interact with the child around their area of special interest, exploring the stories they bring to this feature and looking at the contexts in which these stories have arisen.

For example, it can be useful to ask about: *   roles of individuals or individual parts *   means of communication *   patterns of communication *   power relations between parts/people *   rule-bound or rule-creating systems *   patterns of change *   alliances *   decision-making *   movements between parts/people. In creating a shared means of talking about relationships, which had not previously existed for families and professionals, there emerges a useful resource that enables family

existed for families and professionals, there emerges a useful resource that enables family and friends to access some of narratives about the workings of the world of the person diagnosed with Asperger Syndrome. Of course, this kind of conversation also feels more relevant to the person with the area of special interest and it can be a pleasure for them to experience genuine attention and interest of others in areas of their world that are important to them. They also have the experience of

of others in areas of their world that are important to them. They also have the experience of not being positioned in a mono-dimensional way as the problematic person or the identified patient but as an authority in an area which others in the room know only a little about and as someone with something useful to contribute.

CONCEPTUALISING ‘MIND’ AS RELATIONAL ACTIVITY When people first hear the expression ‘Theory of Mind’, they often believe that this refers to a broad philosophical debate on what counts as ‘mind’; an understandable response. However, in the field of child psychology and child psychiatry, there is assumed to be only one Theory of Mind and it dominates the field with a limited set of assumptions about what ‘mind’ is. This cluster of ideas plays a central part in explaining and diagnosing autistic

what ‘mind’ is. This cluster of ideas plays a central part in explaining and diagnosing autistic spectrum conditions (Baron-Cohen, Leslie and Frith 1985). Theory of Mind centres individual cognition at the heart of its hypothesis. This reflects a wider trend of decontextualising human behaviour within contemporary mental health which dominates the field theoretically and therefore has implications for what forms of treatment are available. The problem is that the dominant approach focuses only

for what forms of treatment are available. The problem is that the dominant approach focuses only on the individual. It relies on an idea that it is the individual who has the problem in them. This approach reflects an attachment to a deficit model of human beings and discourages a focus on people’s relational world. This model does not foreground the exploration of relational possibilities and drawing out evidence of resourcefulness in people. Hickok (2014) situates what are perceived as

and drawing out evidence of resourcefulness in people. Hickok (2014) situates what are perceived as cognitive deficits in people with autism not so much as to do with individual cognition but reflecting limited opportunities for mirror neuron systems. McGuire and Michalko situate autism within a relational system: ‘Rather than conceiving autism as an individualising medical problem, we understand autism as a complex interactional process. We treat autism as belonging squarely in the realm of

autism as a complex interactional process. We treat autism as belonging squarely in the realm of the social and not in the realm of the individual’ (McGuire and Michalko 2011, p.164). In the working fields of autism, professional theory has focused on the individual participants in the conversation. A family of three may be conceptualised as one plus one plus one, for example. Separate entities. The individual parts are separated from the whole. The prominence of an embodied self in the

The individual parts are separated from the whole. The prominence of an embodied self in the literature arises out of the early biological sciences, which investigated the inner workings of the human body to correct any perceived problems whether manifesting as physical or social. The physical body is still used as the metaphorical container and site for investigation and treatment of physical and ‘mental’ problems, as is the case for professional activities with people who are diagnosed as

and ‘mental’ problems, as is the case for professional activities with people who are diagnosed as being on the autistic spectrum. To speak about ‘mental health’ or ‘learning disability’ is a way of individualising experience and communications. It takes the person out of their social world and locates ‘issues’ within a notion of physical self made up of organic matter. The brain is frequently understood as the organic container and structural influence of something called the ‘mind’. This

understood as the organic container and structural influence of something called the ‘mind’. This model proposes that mind is damaged by atypical neurological differences which impact on the individual’s social functioning.

Timimi and colleagues are concerned about the production of knowledge associated with autism and how it is presented: ‘Perhaps more than any other child and adolescent psychiatry category, autism is viewed as the product of sound science with knowledge arising from…the “positivistic” or technical approach’ (Timimi, Gardner and McCabe 2010). Brownlow and O’Dell (2009) critically review the literature on Theory of Mind and conclude that the research has been carried out by outsiders and makes

on Theory of Mind and conclude that the research has been carried out by outsiders and makes fundamental assumptions about neurotypicality, which undermines new knowledge emerging about ability and the whole person. Autism research is almost exclusively dedicated to proving this connection and to finding a cure to prevent ‘atypical’ neurology. It is a strategy which overlooks the cultural and relational contexts and which sidesteps any invitations to reflexivity, which could be of use in

relational contexts and which sidesteps any invitations to reflexivity, which could be of use in considering what kinds of talk, for example, count and are valued and what are not. Leppington says that the constructivist concept of ‘thought’ is not proof of the individual mind but of the social world. The question is not so much ‘How does the individual rational consciousness account for the social world?’ but ‘How, in a social world, to account for culturally specific notions of the

the social world?’ but ‘How, in a social world, to account for culturally specific notions of the individual?’ (Leppington 1991, p.86). Nevertheless, the term ‘Asperger Syndrome’ exists, to date, as a description of a ‘state of mind’ and of behaviours associated with that state of mind. Gergen and Gergen (2002, p.80) reflect that, ‘We differ from the constructivists in that what is imported into the situation is not a “state of mind” but an array of linguistic capacities. These capacities

into the situation is not a “state of mind” but an array of linguistic capacities. These capacities emerge primarily as we acquire the language of the culture.’ A significant element in the diagnosis of Asperger Syndrome and autism involves the Theory of Mind test (Baron-Cohen et al. 1985), which assesses the ability to conceptualise beliefs and attribute them to another. The Sally–Anne test (Baron-Cohen et al. 1985) is meant to show that the child who has Asperger Syndrome is not capable of a

et al. 1985) is meant to show that the child who has Asperger Syndrome is not capable of a kind of third party thought (to empathise with another, imagine what another thinks, and so on) and the learning that can arise from that. In the test, there are two dolls, Sally and Anne. Sally has a marble, which she puts in her basket and then leaves the room. Anne has seen this and while Sally is out the room, Anne takes the marble and hides it in a box. When Sally comes back in the room, the tester

room, Anne takes the marble and hides it in a box. When Sally comes back in the room, the tester asks the child, ‘Where will Sally look for her marble?’ The correct answer is Sally’s basket. Children with Asperger Syndrome are less likely to come to this conclusion, pointing instead to the box. Gregory Bateson’s ideas about the importance of situating actions within context are essential for understanding people. He says: ‘Context’ is linked to another undefined notion called ‘meaning’. Without

people. He says: ‘Context’ is linked to another undefined notion called ‘meaning’. Without context, words and actions have no meaning at all. This is true not only of human communication in words but also of all communication whatsoever, of all mental process, of all mind, including that which tells the sea anemone how to grow and the amoeba what he should do next. (Bateson 1972, p.15)

It would be interesting to experiment with this test across cultures, ages and with variations and see what ‘evidence’ they produced. One of the problems here is that, while the test may be interesting, the conclusions drawn from it are attributed solely to the cognitive abilities of the individual child. Another problem is the acceptance of ‘thought’ as existing in isolation of human relationships. McGuire and Michalko critique the Sally–Anne exercise as decontextualised and creating only a

McGuire and Michalko critique the Sally–Anne exercise as decontextualised and creating only a partial picture which has much undermining evidence about its reliability from other studies (McGuire and Michalko 2011). Unless we study play in other contexts, the apparent lack of creative play or ability to empathise might not be occurring across the board or may be a feature, for example, characteristic of family relationships. In the examples above and below, we see how people reorganising their

of family relationships. In the examples above and below, we see how people reorganising their expectations of communication open up new opportunities for self and other. ‘We do not treat “Theory of Mind” as a “thing-in-the-brain”. Instead, we understand intentionality, shared and otherwise, as a method whereby people, all people, attribute motives to one another as a way to make sense of human interaction’ (McGuire and Michalko 2011, p.173). Systemic theory and practice is interested in what

interaction’ (McGuire and Michalko 2011, p.173). Systemic theory and practice is interested in what counts as ‘knowledge’. In the context of the social world, information is not seen as a free-floating and gatherable set of objective facts but as contextually produced and subjective narratives. Reflexive epistemological knowing is understood as a process rather than end product. Professionals often ask, ‘What can be observed and therefore known about X?’ This is an ontological question to which

ask, ‘What can be observed and therefore known about X?’ This is an ontological question to which modernist science expects answers and that, from here, generalised conditions, syndromes, and so on will be generated. The question ‘How do I observe and know about X?’ is an epistemological question about methods of knowing. But to take a step further into ‘What are the contexts which are likely to be influencing what I think I know about X and how am I looking?’ invites another level of critical

be influencing what I think I know about X and how am I looking?’ invites another level of critical reflexivity in which the enquirer takes responsibility for the inevitability of their bias. Further questions might also be useful: ‘Whose voices am I listening to in this inquiry?’ and: ‘How am I allowing my relationship with my hypothesis to open or restrict what we can together achieve?’ These last two questions are important in that they invite ethical reflexivity about not only ontological

last two questions are important in that they invite ethical reflexivity about not only ontological knowing but about the methodological influences on one’s interpretation and responses to data. The child diagnosed as having Asperger Syndrome may set great value on knowing about their area of special interest, as do professionals on theirs. The question ‘Does the child diagnosed as having Asperger Syndrome have the ability to move between what they know and how they know what they know?’ is

Syndrome have the ability to move between what they know and how they know what they know?’ is based on a particular notion of ability-deficit located in individual mind. Asking instead, ‘What do we need to do to create the dialogical conditions which bring forth co-creative conversation?’ orientates the professional away from looking for evidence to experimenting with relational solutions. Maturana suggests that every family member is a ‘scientist’ – in as much as people generate explanations

suggests that every family member is a ‘scientist’ – in as much as people generate explanations for behaviour (Maturana 1991). He speaks of the passion in human beings to attempt to understand, relate parts of a system, but points out that we can only generate explanations (descriptions) of workings within the limits of our area of structural determinism (Maturana 1991). One could then say that all the participants in collaborative action research (professionals, person diagnosed as having

all the participants in collaborative action research (professionals, person diagnosed as having Asperger Syndrome and other family members) are living systems and are part of other living systems which are determined by culturally generated linguistic structures, such as going to the doctor if you have a worry and entering into a certain kind of individualised talk about the history and symptomology of that worry. Systemic social constructionists, as opposed to constructivists, might say that

of that worry. Systemic social constructionists, as opposed to constructivists, might say that we act in to and out of the limits of the language and stories available to us and the opportunities to tell them (Shotter 1989). According to Maturana, the only possible outcome of human interaction is that professionals and families are more likely to generate explanations and meanings coherent with the limits of their life experience as explained to themselves (Maturana 1991). From a systemic

the limits of their life experience as explained to themselves (Maturana 1991). From a systemic social constructionist understanding of human systems as linguistic systems, we not constrained by experience so much as by conversational opportunities.

GETTING OVER DETERMINISM AND DIAGNOSIS The neurological story of connection creates a theory of inevitable causality. It determines that the individual is the site for treatment and draws on medical ideas to understand and to treat the problem, which is firmly located within the individual. It does not allow for social, cultural and political influences. Nor does it allow for opportunities to: 1) make sense of behaviours and communications within relational contexts; and 2) to work with those

make sense of behaviours and communications within relational contexts; and 2) to work with those relational contexts to create more opportunities for better communications between participants. Following diagnosis, professional interventions encourage ‘neurologically atypical’ people to correct or adapt their communication styles to fit in with the dominant culture. Such interventions are based on behavioural correction with tailored cognitive learning. Ideas about ‘treatment’ have been

based on behavioural correction with tailored cognitive learning. Ideas about ‘treatment’ have been developed within a modernist scientific discourse in which it is assumed that it is possible for one person to acquire more knowledge on a subject than the people coming for ‘treatment’. In a scientific model, there is an assumption that it is possible and desirable to achieve objective information by remaining impartial to the subject. This model does not allow for the ideological bias of the

by remaining impartial to the subject. This model does not allow for the ideological bias of the professional, nor of the familial, socio-cultural and economic influences on the information that is generated by examinations of the person to be assessed. The information to diagnose a condition and inform a ‘treatment’ method is generated by a series of questions designed by professionals in relation to a hypothesis. This hypothesis is inevitably a product of the information available at the time

to a hypothesis. This hypothesis is inevitably a product of the information available at the time and arises out of hidden and therefore unquestioned ideology based on all manner of social, cultural, political and economic influences on methodological assumptions. Diagnostic questions trace the history and symptomatology of a condition and focus on the life of the condition and little on the circumstances in which people are or have been living.

Diagnostic formats restrict the imagination of professionals and families to be curious about what makes a difference to a person’s lived experience and their relationships. Instead, there is the risk of enacting a rule-bound format of assessment. This is likely to produce a description of an individual which is limited and linear. Such an assessment pays little attention to family culture or school resources so there is no room for a circular analysis of how interpersonal behaviours are

or school resources so there is no room for a circular analysis of how interpersonal behaviours are maintained or changed. It follows that what you ask influences what you find and, therefore, what you do – so medical model stories are likely to influence the methods of ‘treatment’ and result in a plan for managing the individual under scrutiny. Because diagnosis focuses on an individual’s cognition, it neglects the collaborative aspects of communication in which others are also responsible for

it neglects the collaborative aspects of communication in which others are also responsible for how dialogue can take place and for what kind of talk counts. Instead of the meeting with professionals becoming an opportunity to experiment with what kind of talking and listening makes a difference, the process of diagnosis sets the professional and service users apart in different camps and reifies their positions. Professionals engaged in diagnostic symptom-spotting often appear to mirror

their positions. Professionals engaged in diagnostic symptom-spotting often appear to mirror monological ways of talking reminiscent of people talking about an area of special interest. This symmetrical form of communication results in the creation of misinformation because it is a one-way activity by the collector of information and precludes the possibility of dialogue. Dialogue is problematic in monological discourses, such as those often found in modernist sciences, as it requires etiquette

monological discourses, such as those often found in modernist sciences, as it requires etiquette of being in relation with people and finding ways of going on in conversation without having a map or a set of instructions. Instead, in a dialogue, participants are required to work at coordinating with each other to get from a to b, to work out how to communicate in ways that are meaningful, appreciative, and carry a sense of possibility in going forwards. Professionals need permission to not

and carry a sense of possibility in going forwards. Professionals need permission to not know in order to find new ways of communicating with people in ways that feel productive. Current prescribed diagnostic procedures are: 1) restricting professionals’ ways of speaking and being with families; 2) not enabling professionals to explore new ways of being and therefore learning with families what kinds of talk make a positive difference; 3) leading to important opportunities being missed by the

kinds of talk make a positive difference; 3) leading to important opportunities being missed by the emphasis on diagnosis over exploratory interventions. It has been my experience that normally sparky and empathic professionals can fall into demonstrating a lack of imagination when acting in relation to their area of special interest – diagnostic criteria; and that they can fail to empathise sufficiently with the person in front of them to find out how they do think, how they are communicating

with the person in front of them to find out how they do think, how they are communicating and what their abilities are. The clinic becomes the corridor for monological behaviour and single stories, which sadly emphasise deficit and inability. Diagnostic procedures become restrictive to happening upon new ways of knowing and being.

LINGUISTIC SYSTEMS AND RELATIONAL KNOW-HOW A shift from a reverent demonstration of knowledge about the area of special interest to a shared world of imaginary play can result in a more ironic relationship with the area of special interest and more know-how in relationships. The following example demonstrates my re-creating of a difficulty when I ask six-year-old Jamie to pretend to be something. I am struggling with competing narratives about how to be with Jamie. On the one hand, I am

I am struggling with competing narratives about how to be with Jamie. On the one hand, I am looking for confirmation of evidence that Jamie has Asperger Syndrome; on the other hand, I am trying to find ways of coordinating with Jamie in the moment of play. In effect, I am in two systems simultaneously: the professional system of diagnostic linguistics and the making it up as we go system of being in spontaneous knowledge-creating relationships. The system in focus eventually becomes the

being in spontaneous knowledge-creating relationships. The system in focus eventually becomes the relationships in the room between people and play objects.

The process of using questions with Jamie is immediately problematic. He appears not to like being asked questions. In addition to conversation with Jamie proving difficult, there does not seem to be an obvious interactive system in his area of special interest, dinosaurs:

Therapist: Can you pretend to be a dinosaur? Jamie: I’m not a dinosaur. Therapist: Do like you’re pretending. Jamie: I’m not a dinosaur. Jamie: I’m Godzilla. Therapist: Okay, why don’t you pretend to be Godzilla? Jamie: I-don’t-know (sing-song, looking elsewhere). I don’t think Jamie had a problem with understanding the concept of ‘pretend play’ as would be suggested by the criteria for diagnosing Asperger Syndrome. I was asking him to act in isolation. I think he may well have pretended to be

Asperger Syndrome. I was asking him to act in isolation. I think he may well have pretended to be a dinosaur if I had asked the grandparents to join in, me too perhaps, and we had all pranced around making noises and talking to each other as dinosaurs. In effect, I was asking Jamie to give a solo performance – and in the context of the House of Tests (the clinic) where he had been initiated into diagnostic tests in the recent past. Shotter is intrigued by: our immediate sensing of the

into diagnostic tests in the recent past. Shotter is intrigued by: our immediate sensing of the qualitative ‘shape’ of how the others around us are responding to us, spontaneously, and the influence of that on how safe and secure we feel in being who we are to them, and how the ‘shape’ of that feeling arouses anticipations within us as to what next might come from them – anticipations as to how they will treat us as being this or that kind of person in the world. (Shotter 2015, p.2)

In this following example from a subsequent play session, I had learned that I needed to enter into the play and be in the relational interactions, take leaps myself, and create both in and out positions.
Therapist: I wonder what a Gigantosaurus moves like? Okay. Here comes the Gigantosaurus. It’s taking gigantic leaps. (Makes leaping noises)

Therapist (as Gigantosaurus): ‘Hello Jamie! How are you today?’ Therapist: Look, the Gigantosaurus spoke. Jamie fetches the T-Rex and makes it roar at the Gigantosaurus. Gigantosaurus: Oh, I’m frightened! T–Rex roars. Gigantosaurus: Eeek! Jamie: It’s a T-Rex! Therapist: It makes a big roar. The Gigantosaurus says, ‘It makes a big roar.’ Gigantosaurus: Are you friendly? Therapist: Maybe the Gigantosaurus wants to be friends with the T-Rex. Do you think he wants to be friends or not?

Jamie: He wants to be friends. Therapist: Does the T-Rex want to be friends? Jamie: Yes, he is. Therapist: Maybe that’s his way of saying hello – doing a big roar. Playing didn’t only enable Jamie to extend his range of communication, it enabled me to extend mine – playing in this way created an ‘us’. I moved between different person-positions and so did Jamie. My earlier questions to Jamie constructed an ‘I–you’. These early questions were influenced by my relationship with diagnostic criteria

an ‘I–you’. These early questions were influenced by my relationship with diagnostic criteria and created a discord in our attempts to communicate with each other. When I entered into and created a shared world with Jamie, this made for a more collaborative and creative culture which seemed not only to make for connection but which brought forth evidence of non-Asperger Syndrome abilities. The imaginary and interactive play going on here is with both parties initiating contact and responding to

and interactive play going on here is with both parties initiating contact and responding to each other. We are creating a new linguistic system in which we are talking about talking and reflecting on relationships. We both know that we are ourselves and yet are pretending to be another creature. We have created a meaning-making system and have moved away from the rule-bound naming, describing and collecting relationship with dinosaurs: When one person acts ‘into’ a jointly constructed setting

collecting relationship with dinosaurs: When one person acts ‘into’ a jointly constructed setting rather than ‘out of’ his or her own plans or desires, an outcome is produced which is independent of any of the individuals involved and ‘belongs’ only to the collectivity they constitute. (Shotter 1989, p.147). In shifting the focus from the child to communicating systems, Jamie’s family started to follow Jamie’s lead in any imaginary play, elaborated themselves and enjoyed the intimacy arising

follow Jamie’s lead in any imaginary play, elaborated themselves and enjoyed the intimacy arising out of this play. But the family also found it hard to step out of the naming games, the question–answer ways of speaking that they had witnessed and felt was expected by professionals in the clinic – just as I had done. Human beings have no innate ability to make sense of complex interactions. They are very difficult to learn to interpret, as we are not usually aware of the contexts people are

are very difficult to learn to interpret, as we are not usually aware of the contexts people are acting out of or think they are acting into. We often feel nervous while we are still in the process of sense-making or when we have misunderstood the other. We have to learn to be patient while we wonder what is going on and we have to learn to act respectfully while we are trying to work this out. The world of human interaction is awash with uncertainties: Instead of understanding autism simply as

world of human interaction is awash with uncertainties: Instead of understanding autism simply as a puzzle, we treat it as an example of the fundamental human features of uncertainty, of the incompleteness and partiality of communication, of the constant risk presented by the potential undoing of the tie that makes you and I a ‘we’. (McGuire and Michalko 2011, p.164)

FROM EXPERT PROFESSIONAL KNOWING TO A LEARNING CULTURE OF COLLABORATIVE ACTION RESEARCH

Rather than rush to a position of expert knowing from without a relationship, the invitation here is for professionals to develop a new culture akin to collaborative action research. Professional knowledge becomes a process of collaborative learning. Learning happens from within the living moment of interaction with people and not through theorising without and about them. It is a pragmatic response, which foregrounds strengths and abilities over the culturally specific products of evidence of

which foregrounds strengths and abilities over the culturally specific products of evidence of disability and communications difficulties. It is also an ethical response to one of the persistent bastions of the psychiatric, psychological and psychotherapeutic professions: the belief that the professional expert has more relevant knowledge than the client and their social network. A collaborative action research approach repositions the identified patient as someone with a contribution to make

action research approach repositions the identified patient as someone with a contribution to make to therapeutic conversations. Their expertise and abilities can be recognised in contrast to how the knowledge of the patient has become de-centred and peripheral (Foucault 1980). Lather’s concept of ‘catalytic validity’ proposes turning a symptom of disorder into a resource for both an identified patient and their family (Lather 1991). Professional expertise has a facilitative and creative

patient and their family (Lather 1991). Professional expertise has a facilitative and creative function in finding ways of incorporating the contribution of all family members and in encouraging the activities and attitudes needed to achieve new ways of seeing and being with each other. This form of dialogue brings forth and showcases the ability of the person with a diagnosis of Asperger Syndrome to explain and develop lineal and circular accounts of complex relational systems. Conversation is

to explain and develop lineal and circular accounts of complex relational systems. Conversation is not understood as a means to collecting knowledge so much as a means of generating knowledge. The shift, both for the person diagnosed with Asperger Syndrome and for the professional, facilitates new ways of knowing how to go on in conversation with less repetitive, rule-bound ways of talking.

CONCLUSION The invitation in this chapter is to understand that diagnosis is usually a monological activity by one person about another. Dialogue, on the other hand, leads to improved communication with people and to better coordination with them. By entering into a collaborative inquiry with people with Asperger Syndrome and their families, professionals can extend repertoires of communicating with people described as having autistic spectrum conditions and their families and friends. If we

with people described as having autistic spectrum conditions and their families and friends. If we resist being governed by Compulsive Diagnosing Behaviours (CDB) and Symptom Spotting Tendencies (SST), we can open ourselves up to new ways of being with people in therapeutic play and conversation. We can encourage a reflexive curiosity about what makes a difference in what we are doing with each other that opens or closes opportunities for meaningful and fruitful dialogue. The study of grammar

other that opens or closes opportunities for meaningful and fruitful dialogue. The study of grammar in both professional and family systems might generate more descriptions of connectedness than would otherwise be available to family members. For professionals to point to parts of the brain and insist the knowledge will emerge in the future about the cause of autism is not of much use to people who want to be appreciated and enter into easier communications. Such lineal causality reduces people

want to be appreciated and enter into easier communications. Such lineal causality reduces people with Asperger Syndrome or high-functioning autism to people with something inherently wrong with them and, by doing so, further isolates them from others. This results in entire research budgets being diverted to the task of locating a mythical organic cause followed by a cure. In the meantime, many possibilities yet to be explored with people diagnosed as having Asperger Syndrome and their social

possibilities yet to be explored with people diagnosed as having Asperger Syndrome and their social networks, on how to improve everyday communications, and with that, their quality of life, are missed. Given how many families crave meaningful interaction with their child with Asperger Syndrome and desire improved harmony across their family, there is much to commend a relationally oriented systemic approach in which all participants are positioned as collaborative action researchers.

This chapter engages with an ethical view of how people’s ideas are modified and influenced by the dominant classification systems, which in a capitalist market has been driving toward a technically based biomedical model of mental wellbeing. Whilst such a model may be good for expanding markets, problems of feeding disproportionate demand against limited resources arise in universal public health systems such as the United Kingdom National Health Service (NHS). A consequence of this

health systems such as the United Kingdom National Health Service (NHS). A consequence of this biomedical model is that psychiatric diagnoses operate in practice as categorical, like other medical or surgical diagnoses, where an illness ‘exists’ or ‘does not exist’. Such a categorical approach is valid in surgery where there is a fracture or no fracture, or in medicine where cancer cells are either present or absent. However, in psychiatry, there is significant theoretical and empirical support

present or absent. However, in psychiatry, there is significant theoretical and empirical support for the concept of dimensionality that encourages a view of presentations as being variations of traits and states of mind that are present on a continuum. Arguments about ‘whether Autism Spectrum Disorder (ASD) exists’ are essentially semantic as it is more a matter of the use of specific language to describe certain presentations amongst professionals and the public, resulting in these presenting

describe certain presentations amongst professionals and the public, resulting in these presenting behaviours being bestowed with a certain meaning, rather than an ‘uncovering’ of some essential truth about the nature of the presenting behaviours. There is no dispute about the existence of ASD behaviours; instead the dispute is about whether these behaviours amount to a discrete naturally occurring category that the diagnostic label represents. Is it fair, necessary or useful to reduce down to

category that the diagnostic label represents. Is it fair, necessary or useful to reduce down to a one-dimensional construct of ASD the evolving personality, experiences, diverse histories and contexts of a growing child with a highly plastic brain? The neoliberally driven desire to encapsulate diverse presentations into medical model reductionist frameworks has resulted in the constantly changing nature of ASD definitions. Whereas the medical model has worked well for most medical

changing nature of ASD definitions. Whereas the medical model has worked well for most medical specialities, this has produced some major conceptual difficulties with highly dynamic mental health presentations such as ASD. First, thresholds for diagnosis are highly variable and have changed multiple times since the inception of the term. Second, the element of subjectivity cannot be taken out from the diagnosis despite the development of multiple diagnostic instruments, as receiving the

out from the diagnosis despite the development of multiple diagnostic instruments, as receiving the diagnosis depends largely on who you ask and who asks the questions, rather than the nature of actual problems encountered by the person. Third, there remains significant and unaddressed cross-cultural variability, which is yet to be explored due to the relative lack of data from most parts of the world. Instead of basing practice on such a narrow reductionist territory, I will argue in favour of

Instead of basing practice on such a narrow reductionist territory, I will argue in favour of value-based approaches (Fulford 2009). Human behaviour involves social and moral dimensions, and cannot be understood without taking into consideration the values of that individual, their family and indeed their broader cultural milieu. Any attempt to ‘treat’, without consideration of these aspects, risks sliding into attempts to exert paternalism and social control through the medium of politically

sliding into attempts to exert paternalism and social control through the medium of politically sanctioned state institutions.

INTRODUCTION The boundaries of psychiatric disorders are fluid and their understanding is evolving. As a result, psychiatric classification systems have long been the subject of controversies. A number of diagnostic terms have been removed from the classifications systems. For example, homosexuality was part of psychiatric classification until 1973, and many new diagnoses have found their way into current diagnostic systems (APA 2013; Blashfield 1998). This continuous changing in diagnostic

into current diagnostic systems (APA 2013; Blashfield 1998). This continuous changing in diagnostic categories is something one would not find in recent decades in any other ‘medical’ speciality. It was around the turn of twentieth century that an interest in discrete categorisation of mental health problems became more evident. Bleuler (1911) first used the term ‘autistic’ to denote a withdrawal from interest in the outside world in individuals diagnosed with schizophrenia. Carl Jung ([1923]

from interest in the outside world in individuals diagnosed with schizophrenia. Carl Jung ([1923] 1971) suggested severe introversion as characteristic of this autistic withdrawal, though he was not in favour of strict classification as he believed that all people have tendencies in different directions. In the context of autism, Leo Kanner (1943) and Hans Asperger ([1944] 1991) are key individuals, who around the same time, though living in different parts of the world (USA and Austria

who around the same time, though living in different parts of the world (USA and Austria respectively), published their research with children and suggested they presented with a syndrome of autism (Kanner 1943) or autistic psychopathology (Asperger [1944] 1991). This became the foundation for future definitions in this contentious area. It is important to note the changes in the understanding of the construct of autism, where once ‘idiocy’ (probably referring to what we now call intellectual

the construct of autism, where once ‘idiocy’ (probably referring to what we now call intellectual disability) was viewed as an integral part of autism and an overlap was believed to exist with the construct of ‘childhood psychosis’ (Creak 1951). This is no longer the case. Further modifications in this construct over the next several decades led to an expansion of the concept of autism from a rare and specific set of behaviours to a ‘spectrum’ that extends from a helpless non-communicative

rare and specific set of behaviours to a ‘spectrum’ that extends from a helpless non-communicative person to some of the most eminent contributors to human progress, such as Newton and Einstein, who have retrospectively been said to have features of autism. One wonders, given that there is such a massive variation, whether it should be called a ‘disorder’ spectrum, or just a ‘human’ spectrum. There is a high level of heterogeneity in the symptoms, and partly due to lack of clarity about the

There is a high level of heterogeneity in the symptoms, and partly due to lack of clarity about the boundaries of this construct, the definition of autism has been widened over time, leading to an ‘autism epidemic’ (Timimi, Gardner and McCabe 2010). With such a wide spectrum and variations in the construct over time and across various cultures of the world, does this label of ‘ASD’ add anything to our understanding and how to help those labelled with it? The classification was originally

to our understanding and how to help those labelled with it? The classification was originally devised as a means of communication amongst professionals, but it has served to strengthen the medical model, which in turn has led to increased paternalistic practices and an increase in the accompanying stigma. I propose that a move towards a social model of understanding and value-based practice is more helpful, and more sustainable, than the current reductionist biomedical model. I must make it

more helpful, and more sustainable, than the current reductionist biomedical model. I must make it clear here that my scepticism is only about the stability of a distinct something called ‘autism’, and not about the subjective distress of the people with difficulties who may be labelled as such.

IS AUTISM A ‘MENTAL DISORDER’? In the past four decades, the concept of mental disorder has been viewed in different ways by differing philosophical orientations, leading to a questioning of the biomedical model. They include critical psychiatry, anti-psychiatry, post-psychiatry and the social constructivist movement. All these movements have in common that they criticise the biomedical model of mental illness, and advocate something which tends to get missed when adopting such a model, which

mental illness, and advocate something which tends to get missed when adopting such a model, which is the use of a more context-rich biopsychosocial approach to understanding the presentations. The norms that define mental disorder in psychiatry are not primarily medical or even scientific, but are really social norms disguised by the involvement of the medical profession and partly under the influence of political and societal pressures (Bolton 2008). The tension around the reliability and

influence of political and societal pressures (Bolton 2008). The tension around the reliability and validity of ASD diagnoses is one manifestation of this inadequacy of the biomedical model. Various movements critical of psychiatry have existed in its history, with strong ‘anti-psychiatry’ critiques made by sociologist Erving Goffman (1968) and philosopher Michael Foucault (1965), who questioned the nature and social/political function of psychiatric institutions. Amongst psychiatrists

the nature and social/political function of psychiatric institutions. Amongst psychiatrists themselves, R.D. Laing (1960) and Thomas Szasz (1974) argued against understanding of mental illness in terms of brain pathology. Szasz (1974) argued that mental illness is no more than a metaphor because it does not have any identifiable basis in physical pathology and is best understood as a way of communication about the distress of an individual. Szasz (1974) was vocal and explicit about the (ab)use

about the distress of an individual. Szasz (1974) was vocal and explicit about the (ab)use of the concept of ‘mental illness’ as a method of avoiding responsibility by individuals, and its use by the society and the courts to avoid punishment; at the same time as enabling social control over individuals deemed non-conformist to a narrowing concept of ‘normal’. He proposed that what is called ‘mental illness’ is better thought of as ‘problems of the living’. A similar moral–medical boundary is

illness’ is better thought of as ‘problems of the living’. A similar moral–medical boundary is of course apparent with bodily disorders, with illness excusing one from responsibility, such as when a doctor gives out an ‘off work’ certificate, but the boundary is far more problematic in psychiatry. Szasz (1974) faced considerable opposition from pro-biological psychiatrists such as Kendell (1975) who have argued that mental illness must be viewed as no different from any bodily disorders. Though

have argued that mental illness must be viewed as no different from any bodily disorders. Though it is claimed that recent research into autism spectrum disorders has shown biological determinants, closer examination of such claims reveals that causative mechanisms or biological abnormalities have not been found for autism, and it would be fair to say that the idea came before the evidence, and the evidence is now being ‘shaped’ to fit the idea (Timimi et al. 2010).

The current problematic state of diagnostic classifications has been aptly summarised by one of the DSM Panel’s own members: The point is not that decisions about what is normal are riddled with personal biases and political considerations, but rather that, by dint of a handful of influential professional efforts, those subjective determinants of diagnoses masquerade as solid science and truth. (Caplan 1995, cited in Hill 2013, n.p.). Let me next try and define the term ‘disorder’. The

truth. (Caplan 1995, cited in Hill 2013, n.p.). Let me next try and define the term ‘disorder’. The American Psychiatric Association (APA 1994) uses the term disorder to imply the existence of a clinically recognisable set of symptoms or behaviours associated in most cases with distress and with interference with personal functions. It recognises that disorder is not an exact term, and is only used to avoid even greater problems that are inherent in the use of terms such as disease and illness.

to avoid even greater problems that are inherent in the use of terms such as disease and illness. The World Health Organisation in its guidelines notes that, ‘social deviation or conflict alone, without personal dysfunction, should not be included in mental disorder’ (WHO 2004, p.351). The definition thus highlights ‘distress’ and ‘personal dysfunction’ as important elements. In clinical practice this may not be seen in cases of autistic spectrum, and, more often than not, it is the distress of

this may not be seen in cases of autistic spectrum, and, more often than not, it is the distress of parents, families or teachers that bring the young person to medical attention. In my view, labelling a person with a mental disorder, without the elements of personal distress and dysfunction, because they are struggling to conform to some culturally accepted norm could be viewed as unethical. If we agree to call highly impressive people from history as disordered, then perhaps we all would want

agree to call highly impressive people from history as disordered, then perhaps we all would want to be disordered! But what should we tell a young person getting diagnosed with ASD about which bracket she or he is being put in – are they with the Einstein group or in the group labelled with intellectual disability? Being ‘different’ should not necessarily mean being ‘disordered’. It is generally accepted that the symptoms of autistic spectrum conditions can and do exist in the general

accepted that the symptoms of autistic spectrum conditions can and do exist in the general population. It is a combination of those behaviours up to and beyond a certain threshold that leads to the behaviours being symptoms of a ‘disorder’. But who should be given the power to decide on where that arbitrary cut-off lies? Those who are given the power to decide are faced with the challenge of developing ‘objective’ approaches to diagnosing it as a categorical disorder, despite it being

of developing ‘objective’ approaches to diagnosing it as a categorical disorder, despite it being acknowledged that the behaviours are present on a continuum. Given the wide range of behaviours examined, the act of making a diagnosis ultimately comes down to the subjective judgement of a professional who decides, on the basis of information provided at that time, whether the person reaches that threshold or not. If it is agreed that we are dealing with a dimensional construct and that there is

or not. If it is agreed that we are dealing with a dimensional construct and that there is a continuum between normal aspects of personality and autistic features, why should a classification system treat it as a categorical condition with a ‘yes she has it’, ‘no she doesn’t’ binary?

Autism is considered to be a ‘neurodevelopmental’ disorder (i.e. problems with the development of the nervous system), and much of the research has been done on young people under the age of 18 years. Very few long-term studies have been done to show what the longer-term prognosis is for people diagnosed with an ASD, so we know little about how they would function as adults. Longer-term outcomes are likely to be dependent on many variables including family and educational support, personal

are likely to be dependent on many variables including family and educational support, personal strengths and weaknesses, and so on. What is achieved by labelling someone with a disorder if it doesn’t really predict outcomes and can lead to increased stigma? Little has been written about the impact of messages of pessimism, hopelessness and ‘chronicity’ and of thinking about autism as a lifelong ‘disorder’. Even if we imagine that mankind has been able to develop a perfect tool to diagnose ASD

‘disorder’. Even if we imagine that mankind has been able to develop a perfect tool to diagnose ASD which has high levels of reliability, what is that tool going to measure? The validity of the concept itself is fluid, and changes with time and culture. We know that the ability to understand the emotions of others, often considered a core deficit in autistic spectrum conditions, is affected significantly by intrinsic factors including age, intelligence, academic abilities, vocabulary, mood and

by intrinsic factors including age, intelligence, academic abilities, vocabulary, mood and physical illnesses, and extrinsic factors including culture, nature of the relationship or ‘attachment’, recent losses and life events. On many occasions I have seen cases where, for instance, the mother of a young boy gives a different picture in support of that child presenting with autistic spectrum behaviours, against a father who claims not to have seen such features when the boy is with him. One of

against a father who claims not to have seen such features when the boy is with him. One of the problems of any interview assessment is that it is based on the assumption that the information is gathered from an ‘objective’ source without any bias, whereas in reality personal perceptions of people vary enormously. If the information depends largely on who you ask the questions to, then the diagnosis based on such information will be equally subjective and potentially invalid. Not only does it

based on such information will be equally subjective and potentially invalid. Not only does it depend on who you ask, it also depends on who asks the questions. Generally the remit of clinical diagnosis is limited to medically trained doctors, whereas in the case of autism not only clinical psychologists but also educational psychologists, speech and language therapists, nurses and even teachers can make or recommend a diagnosis. All these different clinicians will be using their own judgements

make or recommend a diagnosis. All these different clinicians will be using their own judgements driven by their training backgrounds and personal preferences in reaching a decision about saying ‘yes’ or ‘no’ to a diagnosis of autism; consequently setting the threshold for this dimensional concept at different levels across different clinicians, teams and locations.

Advocates for conceptualising autistic spectrum as a ‘disorder’ often believe that it is imperative to have a formal diagnosis, so that the difficulties can be recognised and appropriate support could be sought from educational, social or health services. Whilst this may help procure needed services, the risk is that the young person ceases to be seen as a unique individual as from henceforth they will be recognised primarily by their ‘autism’ label. In my opinion, we should argue for better

will be recognised primarily by their ‘autism’ label. In my opinion, we should argue for better services for those young people who are struggling in the areas (for example) of social interaction at schools or other places, but this should be done without resorting to a lifelong label. As the term ‘autism’ has become part of our language, it has come to be understood in today’s culture as a sign of a serious ‘lifelong disorder’. Thus use of this label can function as a ‘ticket’ to access

sign of a serious ‘lifelong disorder’. Thus use of this label can function as a ‘ticket’ to access specialist resources. It is a shame that reliance on a specific label of disorder is necessary for schools to put in place the right support for a child’s unmet needs. On the other hand, the label is often used as a ‘defence’ or ‘distraction’ for behaviours that may have nothing directly to do with the construct of autism. Many times I have heard the phrase ‘he behaves in this way because he is

the construct of autism. Many times I have heard the phrase ‘he behaves in this way because he is autistic’ and then the attempts to help with that behaviour may be dropped.

INTERNAL STIGMA An important consequence of medical model thinking is the resulting ‘internal stigma’, associated with lack of hope and an expectation of poor outcomes for the person with the label. When a person is labelled with a lifelong disorder by an ‘expert’ and is given some medication (for example to control a behaviour), the burden of responsibility is shifted from the person to the presumed ‘illness’. Now she knows she is not to be blamed because an agent over which she has no

presumed ‘illness’. Now she knows she is not to be blamed because an agent over which she has no control (in this case the ‘disorder’ of autism) is the cause. This may give the patient and/or their family a sense of relief and indebtedness to the expert, and become a source for the expansion of the expert’s business. Responsibility is taken away from the person and those around the person – there is no expectation that the person takes responsibility for their behaviour, and expectations for

is no expectation that the person takes responsibility for their behaviour, and expectations for them to change as they grow and develop may be permanently altered. When we take away the control from the person by saying, ‘It’s not you, it’s the “illness”’, we are not only inculcating a sense of disability with its connotation of helplessness and dependence, we are also projecting the sense that you have no conscious control over what you do. This leads to reduced expectations and ambitions.

you have no conscious control over what you do. This leads to reduced expectations and ambitions. The use of labels can therefore lead to people becoming trapped in a limiting way by their own beliefs and by the reactions and behaviours of those around them to the label. It is therefore important, in my opinion, to loosen the coupling between diagnosis and disability, with any assessment for disability being based on the level of impairment and context-dependent needs (e.g. in schools) rather

being based on the level of impairment and context-dependent needs (e.g. in schools) rather than the diagnosis. A psychosocial model instead would acknowledge that not everything is within any person’s control (diagnosis or no diagnosis) and focus on the social context. When it comes to treatment, there are no known evidence-based treatments available that are specific for ‘autism’ (Timimi et al. 2010) and we are thus far from any ‘cure’. What is the point of attaching a disorder label to a

al. 2010) and we are thus far from any ‘cure’. What is the point of attaching a disorder label to a young person when the cause is not known, it does not predict outcome and there is no cure? There are some potentially serious negative consequences for the child in the future, as it may influence employers against giving a job to a person who has had a diagnosis of Autism Spectrum Disorder. We are neither doing any favours to the young person nor to society by labelling a significant proportion

neither doing any favours to the young person nor to society by labelling a significant proportion (about 1%, according to Baird et al. 2006) of our future workforce as ‘disabled’ with an ASD diagnosis.

AUTISM AS AN INDUSTRY Some researchers have blamed genetics, whereas others thought the environment (such as vaccines) was to be held responsible for causing autism. The list of controversies associated with autism seems endless, but there is still no clarity on the question of causation. The later retracted study associating the MMR vaccine with autism (Wakefield 1998) led to thousands of children not being vaccinated and society then paid the price of a measles epidemic (Press Association

not being vaccinated and society then paid the price of a measles epidemic (Press Association 2013). In the past Bruno Bettelheim thought autism was caused by the pathological behaviour of parents, in particular what he termed ‘refrigerator mothers’ (Timimi et al. 2010), and more recently the theory that autism is the extreme end of the male continuum of behaviours has been put forward (Baron-Cohen 2003). These debates and controversies have proved to be a blessing for some, as they have

2003). These debates and controversies have proved to be a blessing for some, as they have inflated autism’s media profile and helped bring money for research and patients to willing practitioners, which further increases the interest of a growing class of professionals and the public in keeping the category of autism as a medical disorder. One of the consequences of this has been the discrepancy between society’s expectations from the medical model of ASD and the current service provision

between society’s expectations from the medical model of ASD and the current service provision within the financially struggling UK National Health Service, which has led to some prolonged waiting lists for assessments. Since the autism diagnosis is viewed by some as a means to gain financial or educational advantage – for example, financial benefits such as Disability Living Allowance (a disability-related benefit) in the UK, or for insurance purposes in the USA – there has been an increasing

benefit) in the UK, or for insurance purposes in the USA – there has been an increasing number of requests for a diagnostic assessment. It is this type of ‘partly non-purposeful’ misuse of diagnosis, where the diagnoser is not fully aware of the factors influencing their decision-making, that is becoming more common. While talking about the beauty of diagnosis as a solution to human problems, Reich (1980, p.10) says: With remarkable ease diagnoses can turn the fright of chaos into the comfort

(1980, p.10) says: With remarkable ease diagnoses can turn the fright of chaos into the comfort of the known; the burden of doubt into the pleasure of certainty; the shame of hurting others into the pride of helping them; and the dilemma of moral judgement into the clarity of medical truth. It is in this capacity of the diagnosis to apparently explain, and even justify, all types of behaviours which are odd or considered socially unacceptable that the lure and power of diagnosis lies; but it is

are odd or considered socially unacceptable that the lure and power of diagnosis lies; but it is also this perception about diagnosis which can lead to its abuse.

This lure often leads to increasing pressure from society on psychiatric and other medical professionals to do more, diagnose more ASD, and provide more explanations for behaviours deemed socially unacceptable. This growing pressure can be hard to resist. On the one hand, it can lead to research and developments in the field of mental health; on the other hand, it can lead to over-diagnosis, easy labelling of behaviours which are out of social norms, and overuse of unnecessary and potentially

labelling of behaviours which are out of social norms, and overuse of unnecessary and potentially harmful treatments. What is happening today is that a generation of psychiatrists and paediatricians have been trained according to a narrow biomedical model, using classification systems that ignore psychosocial aspects and that have little evidence that they reflect biological reality. All too often medical and other professionals end up diagnosing ASD due to the wishes of schools and families in

medical and other professionals end up diagnosing ASD due to the wishes of schools and families in order to get additional educational and/or social support; and not necessarily because this is what the young person wants and without good evidence that the diagnosis will lead to better outcomes for anyone. This is, in my opinion, unethical. Psychiatry continues to be perceived as unscientific, and keeps getting associated with violence, stigma and untreatability (Allott, Loganathan and Fulford

keeps getting associated with violence, stigma and untreatability (Allott, Loganathan and Fulford 2002). The medical model, which has a narrow focus on within-person experiences and the biology of the individual, creates a decontextualised and simplistic idea of the problem, disengaging us from our social responsibility as a society, and enhancing our dependence on doctors as ‘experts’, rather than trying to use our own problem-solving skills. The alternative of a values-based biopsychosocial

trying to use our own problem-solving skills. The alternative of a values-based biopsychosocial model embraces broader conceptualisations of the origins of complex behaviour.

VALUES-BASED PRACTICE Several forces are inherent in capitalist culture that creates high expectations of people, instilling a ‘false’ sense of having control over their environments (the current insurance-driven and risk-averse culture is an example of that). Society’s high expectations lead to disappointments and alienation, with social consequences including family breakdowns, high divorce rates, crime, domestic violence, child abuse and neglect, alcoholism and drug abuse, and general

rates, crime, domestic violence, child abuse and neglect, alcoholism and drug abuse, and general feelings of isolation and frustration; these often then result in depression and many other mental health problems (Gasper 2010). In a capitalist society, the main discourse around mental health problems is biological, where any behaviour which is deviant from the narrow acceptable range is deemed as ‘pathological’, with the problem then internalised into the person, ignoring their environmental,

‘pathological’, with the problem then internalised into the person, ignoring their environmental, social and political contexts (Prilleltensky and Gonick 1996). Capitalist markets value productivity, competitiveness and independence, with anyone who ‘falls short’ in these areas struggling to survive (emotionally and financially). Mental health care is itself part of these macroeconomics; hence the agenda is driven by those with the money, such as big pharmaceutical companies with vested

the agenda is driven by those with the money, such as big pharmaceutical companies with vested interests in promoting diagnosis. These powerful institutions use the ‘expert’ model of doctors as a mechanism for profit-making through the labelling of individuals. The analytic philosopher Gilbert Ryle (1967) proposed a conceptual model of mental disorder and argued that, except for dementia and learning disabilities, mental illnesses cannot be called medical illnesses, rather they are moral

learning disabilities, mental illnesses cannot be called medical illnesses, rather they are moral problems of living. Others such as Christopher Boorse (1975) and Richard Hare (1952), through their contributions in the linguistic-analytical model, helped our understanding to move from a fact-centred medical model to a fact-plus-values model; one in which evaluative and factual elements are woven through the conceptual fabric of medicine. Wakefield (2000) also played an important role in the

through the conceptual fabric of medicine. Wakefield (2000) also played an important role in the broader understanding of the concept of mental disorder. It is the practical application of these ideas in the form of values-based practice that I believe to be the future, as it emphasises and builds on the diversity of individual human values, in the areas of experience and behaviour with which psychiatry is concerned. There is no ‘right outcome’ in values-based practice, rather it relies on

psychiatry is concerned. There is no ‘right outcome’ in values-based practice, rather it relies on ‘good process’ as a basis for balanced decision-making in partnership with service users (Fulford 2009). In the appropriate clinical application of evidence-based as well as values-based practice, both facts and values must be taken into account at the time of assessment and throughout treatment.

Instead of following the biomedical model that can lead to practice with a poor evidence and ethical basis, mental health practitioners can be guided by the principles of working in partnership with people and their families, with a shared goal of their individual and collective development and empowerment. They will see themselves as helpful allies in a joint project, rather than as revered experts. They will move their practice beyond the approach of focusing on identifying pathologies in

They will move their practice beyond the approach of focusing on identifying pathologies in favour of one that elicits competencies. Persons with mental health problems have skills, resilience and capacities to grow. As the social and psychological world of the child has a critical influence on their wellbeing and development, a more systemic approach to practice should be followed. It is time for psychiatrists and other mental health practitioners to recognise that diagnosis in psychiatry is

psychiatrists and other mental health practitioners to recognise that diagnosis in psychiatry is not a values-neutral scientific process, and it is time to more actively take into account the role of values in order to work in genuine partnership with the service users (Fulford 2009). My final thought is that very few people have spoken up as advocates on behalf of those children and young people who are at the centre of it, because usually it is the professionals, parents and teachers around

who are at the centre of it, because usually it is the professionals, parents and teachers around them, who will, with their own agendas, speak on their behalf. If given a choice between getting a lifelong label of a disorder with all the possible repercussions for the rest of their life, or getting support without the diagnosis, who would want to get a label? It is indeed a shame that in today’s world, appropriate support cannot be sought without having first to resort to a label of

in today’s world, appropriate support cannot be sought without having first to resort to a label of ‘disorder’. It is our ethical duty, whether we are clinicians, parents, teachers or politicians, to change this.

INTRODUCTION As is the case for all psychiatric disorders, the diagnostic process for Autism Spectrum Disorder (ASD) involves the matching of particular presenting behaviours against those listed in agreed clinical definitions of the condition. Many of such behaviours are related to language and communication; by definition, the diagnosis is associated with some level of apparent difficulty in relation to reciprocal conversational interaction. Numerous specific language and communication

in relation to reciprocal conversational interaction. Numerous specific language and communication behaviours are also diagnostically relevant (for a complete description, see Rapin and Dunn 2003). These include: pronoun reversal (i.e. use of second person ‘you’ where first person ‘I’ is grammatically expected) and other pronoun misuse (e.g. use of third person ‘s/he’ to refer to oneself); echolalia (i.e. immediate or delayed repetition of previously heard language); idiosyncratic language use,

(i.e. immediate or delayed repetition of previously heard language); idiosyncratic language use, including apparently self-generated words; apparent failure to answer, and/or mis-answering of, questions; stereotypical language (i.e. unusual, and often ostensibly repetitive, use of ‘chunks’ of language); and a range of non-verbal communication issues in relation to eye gaze, gesture, and use of the body and space during interaction. In psychiatric diagnostic frameworks, the behaviours that are

body and space during interaction. In psychiatric diagnostic frameworks, the behaviours that are specified in clinical criteria are described as being signs that index the ‘mental disorder’ in question. Hence, echolalia, pronoun reversal, idiosyncratic language and so forth can be considered signs of ASD. In reflection of psychiatry’s lineage, this terminology has been appropriated from medicine where ‘sign’ refers to an externally observable physical phenomenon indicative of an underlying

where ‘sign’ refers to an externally observable physical phenomenon indicative of an underlying physiological problem. As an internet search indicates, describing ASD explicitly in terms of signs and symptoms1 is commonplace. Accordingly, it is typically assumed that language and communication behaviours such as those listed above can legitimately be represented in these terms. In this chapter, I argue that there are problems associated with conceptualising language and communication behaviours

argue that there are problems associated with conceptualising language and communication behaviours within this kind of framework. These arguments are congruent with an established line of critical thinking that is commonly applied to diagnoses such as depression and schizophrenia. It is notable that these well-rehearsed arguments are not typically considered in relation to ASD, despite it having emerged from the same frameworks and methods of practice as other psychiatric diagnoses.

it having emerged from the same frameworks and methods of practice as other psychiatric diagnoses. Regardless, it will be demonstrated that such critiques are directly relevant for critical consideration of current thinking about language and communication in ASD. This chapter is organised as follows. First, I briefly present the aforementioned critical arguments that have been made more generally in relation to psychiatric diagnosis. As will be described, these arguments problematise the

in relation to psychiatric diagnosis. As will be described, these arguments problematise the manner in which psychiatric diagnostic frameworks construct human behaviours and experiences as if endogenous (coming primarily from within the person) products of underlying mental disorder, which can therefore legitimately be interpreted and discussed out of context (be this subjective, social, cultural or otherwise). These arguments will then be adapted in order to challenge dominant descriptions of

or otherwise). These arguments will then be adapted in order to challenge dominant descriptions of language and communication in relation to ASD. Finally, I illustrate how the aforementioned signs of ASD can be repositioned as contextually meaningful, through presenting a socially oriented analysis of two real interactions involving diagnosed children.

THE PROBLEMS OF CONTEXT WHEN DEFINING DISORDER The routes by which diagnostic categories are proposed, defined and subsequently accepted by professional communities are often taken for granted within medical disciplines themselves. Outside of these disciplines, however, there is ongoing interest in understanding these matters as complex and contestable social processes worthy of examination in their own right. In relation to medicine, many theorists have sought to deconstruct hegemonic means

their own right. In relation to medicine, many theorists have sought to deconstruct hegemonic means of describing the body, health, ill health and physical disease (Brown 1995), as well as the lived experiences of those classified as ill (e.g. Conrad and Barker 2010). This work has powerfully demonstrated that Western concepts of disease, whose universality and objectivity may be taken for granted, when viewed outside of the uni-disciplinary lens of medical science can alternatively be

granted, when viewed outside of the uni-disciplinary lens of medical science can alternatively be understood as culturally specific, socially situated and subjectively experienced. An overlapping body of work within critical psychology and psychiatry specifically focuses on ‘psychiatric disorders’ as definitional apparatus for the classification of apparently problematic behaviours, thoughts and experiences. These perspectives charge that such frameworks, in spite of their veneer of scientific

experiences. These perspectives charge that such frameworks, in spite of their veneer of scientific neutrality, inevitably propagate particular culturally – and historically – situated sets of ideas about people, what people (should) do, and how people (should) interact with one another and the broader social world. These ideas are shared across the definitions of all psychiatric disorders, as they are inexorably embedded within the classification frameworks and professional practices though

they are inexorably embedded within the classification frameworks and professional practices though which such conditions are described and identified. To identify the specific world-views that are central to Western psychiatry, one can turn a critical eye to the published diagnostic criteria themselves. For instance, Crowe (2000) conducted a discourse analysis of the DSM-IV in terms of its organisation, structure and the forms of language used therein. Through this analysis, common tacit

organisation, structure and the forms of language used therein. Through this analysis, common tacit themes underpinning psychiatric disorders as particular ways of thinking about people and their behaviour (rather than as ‘medical problems’ per se) were identified. One of these themes is particularly important for the discussions presented in this chapter. Just as, for instance, the rash associated with measles is tacitly understood in medicine as an emergent consequence of a specific viral

with measles is tacitly understood in medicine as an emergent consequence of a specific viral infection internal to the ill person’s body, in psychiatry the signs listed on diagnostic criteria are similarly interpretable as comparably emerging from an underlying specific mental disorder internal to the affected individual. As Crowe discusses, this individually focused approach to definition inevitably overlooks other possible interpretations of the same issues: It excludes the possibility that

overlooks other possible interpretations of the same issues: It excludes the possibility that [troubling behaviour/experience] may be a response to external events. The definition of mental disorder assumes that identification of disorder is determined by a subjective experience of distress and that this subjective experience of distress is a symptom of some disorder. This is a self referential process dependent upon classifications of disorder and then a pursuit of signs that could be

process dependent upon classifications of disorder and then a pursuit of signs that could be interpreted as symptoms in order to validate a subjective appraisal of disorder. (Crowe 2000, p.72)

So, through a process of circular thinking (see also Boyle 1999), signs of disorders can primarily be interpreted as merely indexing the presence of the disorder itself. It is suggested that such a theorising of human functioning, reinforced through the individually focused presentation of clinical criteria, provides a specific interpretative framework which leaves little space for interpreting behaviours, thoughts and experiences as possessing contextual and/or subjective meaning. Such

behaviours, thoughts and experiences as possessing contextual and/or subjective meaning. Such concerns underpin many critiques of the decontextualised manner in which psychiatric discourses represent certain aspects of human experience and similarly have spurred efforts to highlight contextualised alternative interpretations of the same phenomena. For example, some theorists have sought to position experiences associated with diagnoses such as depression (e.g. misery, pervasively negative

experiences associated with diagnoses such as depression (e.g. misery, pervasively negative thinking) and schizophrenia (e.g. reporting seeing or hearing things, holding apparently unusual beliefs) as meaningful contextualised responses to subjective experience (e.g. Thomas, Bracken and Leudar 2004). Conversely, a far broader interpretative context is made relevant by community-orientated psychologists, for whom such issues are considered in relation to shifting socio-economic trends and the

for whom such issues are considered in relation to shifting socio-economic trends and the accompanying nexus of change in labour markets and social governance institutions. From this perspective, forms of distress currently thought of as psychiatric conditions are reconstructed as meaningful individual responses to the structural and economic inequality and social upheaval associated with neoliberal systems of government (e.g. Curtis and Curtis 2012). In this chapter, a similarly contextualised

systems of government (e.g. Curtis and Curtis 2012). In this chapter, a similarly contextualised interpretive framework will be argued for in relation to language and communication in ASD. Where this differs from the arguments described above is that its interpretive focus falls upon a different form of context – I argue below that the language and communication signs of ASD must be re-thought in terms of the specific social, interactional and relational circumstances in which they might be

in terms of the specific social, interactional and relational circumstances in which they might be observed. Let us now explore some issues with existing decontextualised accounts of language and communication in ASD, by deconstructing an exemplar of a relevant sign associated with the diagnosis.

DECONSTRUCTING LANGUAGE AND COMMUNICATION IN ASD Consider the following communication-relevant criterion for ASD as listed in the DSM-5 (APA 2013): the ‘failure of normal back and forth conversation’ (see DSM-5, ASD criteria A.1). Following Crowe (2000), through inclusion in diagnostic criteria this phenomenon is presented as a problem demonstrated by an individual, which is indexical of the presence of ASD within the individual. But to what extent is this construction sustainable? Is it

presence of ASD within the individual. But to what extent is this construction sustainable? Is it legitimate to understand a ‘failure’ of conversation as an individual matter, isolated from the social contexts in which it occurs? One way to approach these questions is by considering more precisely what could constitute ‘normal back and forth conversation’, and indeed ‘failure’ of this. Implicit in the description of this sign is what is described in psychology as pragmatic ability, defined as

in the description of this sign is what is described in psychology as pragmatic ability, defined as an individual’s overall supposed competence to use language socially. Lists of pragmatic skills and difficulties are often provided in work about ASD; for instance, Baron-Cohen (2001, p.178) notes the following as potentially compromised in ASD, all of which presumably fall under the umbrella of ‘normal back and forth conversation’:

1. Tailoring one’s speech to a particular listener. 2. Adapting the content of one’s speech to what your listener already knows or needs to know.
3. Respecting conversational maxims […] such as being truthful, relevant, concise, and polite.
4. Turn-taking appropriately so that there is space for both participants in the dialogue.

4. Turn-taking appropriately so that there is space for both participants in the dialogue.
5. Being sensitive to the other person’s contribution to the conversation. 6. Recognising what is the wrong or right thing to say in a particular context. 7. Staying on topic. 8. Appropriately helping your listener to follow when a topic change is occurring.

The tone of this list (and the many others like it) is easy to take for granted, but note that its approach to conceptualising communication is markedly decontextualised. None of these descriptions of everyday aspects of communication behaviours (other than possibly item 6) include references to contextual issues such as where speakers might be, who (or how many people) they may be talking to, what they might be talking about, or what they might be doing more broadly through their talk.

to, what they might be talking about, or what they might be doing more broadly through their talk. Instead, these points are presented as ‘abilities’ that an individual can possess or, potentially, not possess. Yet everyday experiences of language and communication suggest that whatever a ‘failure of normal back and forth conversation’ might constitute differs according to social and interactional context.

Take item 4 on the above list about ‘turn-taking appropriately so that there is space for both participants in the dialogue’. It is common sense that the distribution and nature of speakers’ contributions to an interaction varies depending on context. Social encounters in many settings may be asymmetrical, in that one speaker is positioned to do or say more than the other. There are many examples of normative asymmetry in interaction, including encounters between teachers and pupils, doctors

of normative asymmetry in interaction, including encounters between teachers and pupils, doctors and patients and so forth, where there are differential rights associated with who can ask questions and demonstrate knowledge (Heritage 2004). There are even social settings (e.g. meetings, wedding receptions, lectures) where there exists prior agreement about who speaks, when, and to do what (see Sacks, Schegloff and Jefferson 1974). Evidently, what could be judged as ‘appropriate’ (or a failure

Schegloff and Jefferson 1974). Evidently, what could be judged as ‘appropriate’ (or a failure of) turn-taking differs across each of these contexts, to the extent that behaviours said to represent a problem in one setting may not be identified as such, or manifest at all, in another. Comparable arguments about context-specificity are applicable to all of the language and communication phenomena listed in the first paragraph of this chapter. For example, at what point does repetition, forms of

listed in the first paragraph of this chapter. For example, at what point does repetition, forms of which are commonplace in everyday interaction, become pathological? Similarly, when might language become idiosyncratic, for whom, and in what contexts? If these signs legitimately represent endogenous manifestations of underlying disorder, it follows that they should be possible to define precisely out-of-context, yet clearly this is challenging. Such challenges are further illustrated on

out-of-context, yet clearly this is challenging. Such challenges are further illustrated on considering the various ‘failures’ in relation to conversations that are experienced by all people relatively frequently in their day-to-day lives. For instance, it is part of everyday social experience that people sometimes are not concise, are (advertently or inadvertently) impolite, insensitive to what is the ‘right or wrong thing to say’, or (advertently or inadvertently) speak over another person.

is the ‘right or wrong thing to say’, or (advertently or inadvertently) speak over another person. Such incidents do not immediately indicate the presence of disorder. Hence, during the diagnosis of ASD, judgements must be made about whether these issues occur in such a way that an implicit threshold for ‘a-typicality’ is reached. These judgements are both subjective and culturally specific. As Daley (2002) discusses, diagnostic decision making varies significantly across cultural contexts,

Daley (2002) discusses, diagnostic decision making varies significantly across cultural contexts, even when based upon common clinical definitions. It seems that context appears central to interpretation, even at the seemingly decontextualised level of diagnosis.

In spite of these issues, language and communication phenomena are typically presented as endogenous in most textual accounts of ASD. This reflects a historically powerful hegemony; as noted above, individualised and decontextualised description represents a common feature of psychiatric classification, and in disciplines outside of psychiatry there is a comparably long history of individualised and asocial theorising of language and communication. For example, within Western psychology,

and asocial theorising of language and communication. For example, within Western psychology, language has traditionally been theorised as a window into a private realm of mental states, as opposed to a social phenomenon (Potter and te Molder 2005). This perspective is isomorphic, or corresponds, with the decontextualised methods of description in psychiatric diagnostic frameworks, as is reflected by most theoretical accounts of language and communication in ASD. Here, such behaviours are

by most theoretical accounts of language and communication in ASD. Here, such behaviours are consistently presented as individual psychological phenomena that can be considered in isolation from social or interactive contexts (Sterponi, de Kirby and Shankey 2015), as they are meant to reveal deficits in supposed cognitive, neurobiological (e.g. De Fossé et al. 2004) and/or genetic (e.g. Bartlett et al. 2014) substrates of language and communication. Whilst the separation of language and

et al. 2014) substrates of language and communication. Whilst the separation of language and communication from context is taken for granted across the majority of clinical, research and popular accounts of ASD, there are implications of these forms of knowledge and description. Following the critical psychology perspectives outlined earlier, it is inevitable that decontextualised frameworks restrict the range of meanings and interpretations that can be conferred onto communication behaviours

the range of meanings and interpretations that can be conferred onto communication behaviours potentially describable as signs of ASD. For instance, in the case of echolalia, it could be that the echoed phrases in question have a personal meaning for an individual and/or those around them, or only manifest in particular affective, situational, interpersonal or relational contexts – or, indeed, are responded to as meaningful by those around the individual, and thereby perform a social function.

responded to as meaningful by those around the individual, and thereby perform a social function. It is unclear how such interpretations could sit within the narrow parameter of description associated with a decontextualised, signs-based account of the same phenomena, which would primarily emphasise the diagnostic relevance of the behaviour. In summary, I argue that to construct certain language and communication behaviours as merely signs of ASD may obfuscate personal, contextual, experiential

communication behaviours as merely signs of ASD may obfuscate personal, contextual, experiential or social meanings for the phenomena in question, in favour of upholding a persisting medical analogy that appears logically contestable. Few practitioners who work with people with ASD would disavow the importance of facilitating the social participation of diagnosed individuals. Whilst ‘participation’ can have many meanings, one relevant interpretation relates to whether an individual is assumed

can have many meanings, one relevant interpretation relates to whether an individual is assumed and/or positioned by others to contribute meaningfully at any moment in a given social encounter (Shakespeare 1998). Hence, if it is that interpretation of language and communication behaviours as individual markers of pathology can stymie the attribution of competence and agency to diagnosed individuals, it appears reasonable to respond to such interpretations as actions that are potentially

it appears reasonable to respond to such interpretations as actions that are potentially damaging and dangerous, both to individuals and to a broader inclusive society.

RECONSTRUCTING LANGUAGE AND COMMUNICATION IN ASD – IN CONTEXT Decontextualised perspectives on language and communication in ASD dominate descriptions of the condition, and hence influence representations of diagnosed individuals. However, as suggested above, a dominant voice is never the only voice. By re-examining such matters from alternative perspectives there exist possibilities to develop alternative accounts of language and communication in ASD. Helpfully, there has been considerable

alternative accounts of language and communication in ASD. Helpfully, there has been considerable criticism of the dominant individualised, asocial and decontextualised academic positions on language and communication more broadly. Some of these criticisms are aligned to particular methodological approaches for analysing language and communication, which model these as social phenomena rather than as products of individual psychology. Such discursive approaches typically focus on examining

than as products of individual psychology. Such discursive approaches typically focus on examining language in the specific interactional, social, cultural and/or ideological contexts of its usage. When applied to so-called communication disorder (including with relation to ASD) these methods can yield powerful alternative representations of behaviours and diagnoses, which usefully triangulate the arguments presented above. In the remainder of this chapter, I illustrate these possibilities by

arguments presented above. In the remainder of this chapter, I illustrate these possibilities by applying a specific discursive methodology, Conversation Analysis (CA), to generate alternative contextualised accounts of two language and communication phenomena associated with ASD. CA uses recordings of real social encounters to generate micro-detailed qualitative accounts of the organisation of social interaction. Analysis focuses not on individual speakers’ behaviours in isolation, but instead

interaction. Analysis focuses not on individual speakers’ behaviours in isolation, but instead on sequences of turns produced by all those in an interaction. CA is based on the fundamental principle that the meaning of any turn can be interpreted inductively according to what the next speaker does subsequently – hence, in terms of the context of its production. To provide a basic example, a ‘hello’ can be interpreted by the analyst as a greeting if reciprocated by another speaker. This

a ‘hello’ can be interpreted by the analyst as a greeting if reciprocated by another speaker. This principle leads to a strict analytic focus on what the participants in the interaction themselves demonstrate to be relevant (or indeed problematic) at any moment in an encounter. Therefore, the analyst avoids projecting personal post-hoc assumptions about the meaning or function of people’s talk or behaviour, in favour of examining its treatment in context, at a specific point in time, by those

behaviour, in favour of examining its treatment in context, at a specific point in time, by those who were involved then and there. CA has been used to examine social interactions across a broad range of contexts (for an accessible introduction, see Wooffitt 2005). A small but growing field of work specifically focuses on encounters in which one or more participants are categorised as disordered (see Antaki and Wilkinson 2013), including in terms of ASD (for a review, see Garcia 2012). For

(see Antaki and Wilkinson 2013), including in terms of ASD (for a review, see Garcia 2012). For example, several CA studies have examined recordings of interactions involving apparently echolaic language (e.g. Sterponi and Shankey 2014; Stribling, Rae and Dickerson 2007; Wootton 1999). This work has consistently indicated that such language manifests variably in response to particular interactional contexts, and is not inevitably treated as problematic or meaningless by other speakers. This is

contexts, and is not inevitably treated as problematic or meaningless by other speakers. This is incongruent with the dominant construction of the same behaviour as a mere index of underlying disorder.

I now present an example of such analysis in terms of another language and communication phenomenon associated with the diagnosis. The short extract below comes from a play-based therapy session involving Jonathan, an eight-year-old boy with a diagnosis of ASD, and Rachel, a 19-year-old speech and language therapy student, which was recorded as part of a larger research project.2 Following the session, Rachel commented that Jonathan’s language appeared strikingly repetitive. As described

the session, Rachel commented that Jonathan’s language appeared strikingly repetitive. As described above, ‘repetition’ is a language and communication sign associated with ASD, and therefore could be interpreted as a behaviour merely indexing ASD, or alternatively reflecting underlying cognitive deficits. However, a CA examination of the session indicated that not only was Jonathan’s repetition variable (in terms of what was repeated, when, and how) but was also systematic, in that it emerged

variable (in terms of what was repeated, when, and how) but was also systematic, in that it emerged at particular interactional junctures. Most intriguingly, it appeared to serve a contextualised social function. In the following extract, Rachel and Jonathan are seated at a table with a set of Thomas the Tank Engine toys, which Jonathan is removing from a bag and arranging on the table. During this section of recording, which lasts less than 30 seconds, Jonathan repeats a name of one of the

this section of recording, which lasts less than 30 seconds, Jonathan repeats a name of one of the toys – ‘Diseasel’ – six times over a short stretch of interaction in a manner that is impressionistically repetitive (as marked with sideways arrows). A transcription glossary is included at the end of the chapter.

Extract 1: ‘Diseasel’ ``` 1  R     who’s that one 2        {(points to specific train) 3  (..) →4 J     the new (.) Diseasel →5       (.) Diseasel (.) Duhseasel 6  R     oh right (.) can {I have a look at him 7                       {(R reaches out for train) 8  (..) 9        (R looks to J) 10 R     is that alright 11 J     (points at toy) →12      it’s (.) Diseasel (.) Duyseasel 13       (J lifts train to R’s face) 14       meet him 15       (R leans back and addresses train) 16 R     oh (.)

train to R’s face) 14       meet him 15       (R leans back and addresses train) 16 R     oh (.) hello 17       he’s nice isn’t he 18       he’s bigger than [(inaudible) 19 J                      [and his name is →20      Diseasel 21 R     Diseasel (.) that’s different isn’t it 22 J     it’s told by Ringo Starr 23       (J looks at trains) 24       mmmuh (.) now (.) it’s Toad now 25       (J picks up new train) ``` I will now discuss this extract line by line. In lines 4–5, ‘Diseasel’

(J picks up new train) ``` I will now discuss this extract line by line. In lines 4–5, ‘Diseasel’ represents an appropriate response following R’s question in line 1; what is more impressionistically unusual is its repetition. However, in line 6 R does not indicate there to be any problems regarding J’s answer, despite being positioned to do so as asker of the question (Schegloff 1992). In fact, line 6 explicitly accepts J’s answer as adequate (‘oh right’) in spite of the apparent repetition,

line 6 explicitly accepts J’s answer as adequate (‘oh right’) in spite of the apparent repetition, before moving the interaction forward. What happens next is interesting. J does not respond to R’s suggestion about looking at the Diseasel toy (an omission that R herself indicates in line 10), but instead repeats the word again twice in line 12. Whilst appearing impressionistically repetitive, compare this turn against lines 4–5: whilst the former is grammatically incomplete (beginning with ‘the

this turn against lines 4–5: whilst the former is grammatically incomplete (beginning with ‘the new’), the latter is a complete sentence with a grammatical subject (‘it’s Diseasel…’). This modification is potentially significant, as speakers typically produce increasingly grammatically precise repetitions of prior talk in a bid for clarification when interlocutors have not responded in the desired manner (see Schegloff, Jefferson and Sacks 1977). This raises the interesting possibility that,

manner (see Schegloff, Jefferson and Sacks 1977). This raises the interesting possibility that, from J’s perspective, R’s response in line 6 may not have been what was anticipated by lines 4–5. Following this second repetitive turn, J immediately lifts Diseasel to R whilst directing her to ‘meet him’ (line 14). R provides a response in lines 17–18, but J then speaks over her to retake the floor for further repetition. This turn (lines 19–20) is again grammatically different from those previous.

further repetition. This turn (lines 19–20) is again grammatically different from those previous. First, it links to R’s half-completed response with ‘and’, thereby ratifying the appropriateness of her prior turn in spite of this interruption. Second, it contains only a single iteration of ‘Diseasel’. Finally, it is more precisely worded than line 12, explicitly establishing that ‘Diseasel’ is the name of the toy (compare ‘and his name is Diseasel’ against ‘it’s Diseasel’ and ‘the new

is the name of the toy (compare ‘and his name is Diseasel’ against ‘it’s Diseasel’ and ‘the new Diseasel’). Above, I noted that speakers typically use increasingly precise repetitions to provide clarification when the intended action of an earlier turn has apparently not been realised. The subsequent sequence provides evidence that this may be the case here. In line 21, R herself uses ‘Diseasel’ in her talk for the first time. What happens next is striking: J desists repeating ‘Diseasel’,

in her talk for the first time. What happens next is striking: J desists repeating ‘Diseasel’, before ultimately shifting focus to another toy (lines 23–24) and thereby closing this part of the interaction. This desistance suggests that, from J’s perspective, any unfinished interactional business has now been resolved. Hence, in this short extract, it appears that J’s repetition represented an attempt to prompt R to acknowledge explicitly the name of the toy. Regardless of whether this is an

attempt to prompt R to acknowledge explicitly the name of the toy. Regardless of whether this is an unusual aim for J to pursue, the means by which he did so (through repetition and progressive reformulation of turns) constitute typical interactional practices, which moreover appear ultimately to have worked in this context. Strikingly, J’s other repetitive language during the recorded session similarly desisted once R had ratified something in J’s immediately prior talk. Such dynamically

similarly desisted once R had ratified something in J’s immediately prior talk. Such dynamically variable, active and functional use of repetition, which has demonstrable contextual meaning for both participants, cannot be accounted for if it is merely described as a sign of ASD. Instead, the above account positions repetition as a social route through which J contributed to an interactional exchange shaped by both he and R.

There are further implications of this final point. From a CA perspective, an individual’s ostensibly problematic communication and/or behaviour must, to a greater or lesser extent, be analysed in terms of the context established by prior turn(s) of co-participant(s). Hence, it follows that co-participant(s) may have a role (albeit unintentionally) in the subsequent manifestation of behaviours that could be described as signs of the condition. This is not to suggest that J’s behaviour in the

that could be described as signs of the condition. This is not to suggest that J’s behaviour in the above extract is the ‘fault’ of R, but instead that all human behaviour – be it interpreted as atypical or otherwise – can be considered as socially mediated and contextually specific. Such a position, which is enabled by approaches such as CA, presents a challenge to decontextualised sign-based constructions of language, communication and behaviour in diagnoses such as ASD. The late critical

constructions of language, communication and behaviour in diagnoses such as ASD. The late critical psychologist Mark Rapley, in relation to adults categorised as intellectually disabled, made powerful arguments of this nature. For instance, Rapley (2004) used a CA approach to demonstrate how several so-called dispositional tendencies endogenously associated with intellectual disability (such as acquiescence; see Sigelman et al. 1980) are, when examined in context, apparent interactional

as acquiescence; see Sigelman et al. 1980) are, when examined in context, apparent interactional by-products of the institutional/professional communications that such individuals tend to experience. My colleagues and I adopted this standpoint in work about a child with a diagnosis of ASD who appeared impressionistically inflexible during play work conducted by me (Muskett et al. 2010). Using CA, we demonstrated that this inflexible behaviour occurred at junctures in the interaction where I was

we demonstrated that this inflexible behaviour occurred at junctures in the interaction where I was attempting (often intrusively) to play with the child. However, analysis also indicated that the child may not have been setting out to play at all, but instead was apparently attempting to tell a story using toys. Therefore, my play-focused interjections were arguably inappropriate. Following this insight, in later sessions I negotiated explicitly the nature of the activity as play rather than

insight, in later sessions I negotiated explicitly the nature of the activity as play rather than storytelling, and in this context the child’s seemingly inflexible behaviours were not evident.

The second extract below illustrates these themes. The participants are Leon, an 11-year-old with a diagnosis of ASD, and Teresa, a 21-year-old speech and language therapy student. In this case, during her work Teresa reported that she found Leon’s conversation style to lack reciprocity. Leon was interested in a television programme about dinosaurs called Walking with Beasts, and was reported to often adopt the style of the programme’s narrator during conversation. Teresa experienced this as

often adopt the style of the programme’s narrator during conversation. Teresa experienced this as exclusionary, rendering her unable to contribute to the interaction. As with Jonathan’s repetition, Leon’s conduct could therefore be legitimately described as a sign of ASD – the aforementioned ‘failure of normal back and forth conversation’. However, on examining the interaction using CA, a more complex picture again emerged. Just as Jonathan was reported to be repetitive but did not repeat

complex picture again emerged. Just as Jonathan was reported to be repetitive but did not repeat everything, Leon did not always talk like the narrator of Walking with Beasts. CA therefore enabled exploration of the circumstances in which he did adopt this style and with what consequences. In the case of this interaction, Leon began speaking as if a narrator from approximately 40 seconds into the recording (see line 38 below), facilitating identification of what may have precipitated a

into the recording (see line 38 below), facilitating identification of what may have precipitated a transition into this style.

Extract 2: ‘Walking with Beasts’ ``` 1  T     so you are a bit of a palaeontologist 2  (.) 3  L     no (.) I just listen (.) and read 4        like about the (.) books 5        and (.) listen on the (.) DVD 6        it’s a- usually in complete series 7        and usually I get some(.)thing from 8        (.) the vi- (.) on (.) taped on video 9  (0.5) 10 T     really (.) so (.) d’you- 11 (0.4) 12       so d’ya like watching films about dinos[aurs 13 L

so d’ya like watching films about dinos[aurs 13 L                                            [uhhh 14 (0.5) 15       not exactly with Jurassic Park (.) no 16 (0.4) 17 T     it’s not very accurate (.) is it Jurassic Park 18 (.) 19 L     no 20 (0.5) 21 L     too- (.)    {raahwrr 22                  {(L makes ‘monster’ gesture) 23 (0.5) 24 L     too much (.) scary (.) things 25       (L looks up, maintains eye contact with T) 26 (0.7) 27 L     {su- 28       {(T nods, maintaining eye contact)

maintains eye contact with T) 26 (0.7) 27 L     {su- 28       {(T nods, maintaining eye contact) 29       (L breaks eye contact) 30 (1.4) 31       (L looks around) 32 L     errrr I didn’t- 33 (0.4) 34 L     soooooo (.) the thingy (.) erm 35 (1.1) 36       (L makes brief eye contact with T) 37 L     I’ll say- 38 (.) so after the death of the dinosaurs- 39       err (.) took millions of years to recover ``` The first person to speak on the recording is Teresa, with her turn establishing that

recover ``` The first person to speak on the recording is Teresa, with her turn establishing that ‘dinosaurs’ is the live topic for forward discussion. Correspondingly, between lines 9 to 24 L and T engage in a (somewhat stilted) conversation on this topic. Whilst the interaction lacks fluidity, note that at this point L is not acting as if a narrator, but instead is providing subjectively fitting answers to T’s questions. Following these question–answer pairs, the interaction changes in line

answers to T’s questions. Following these question–answer pairs, the interaction changes in line 24. First, L looks to T with sustained gaze (line 25). Typically, such gaze serves to nominate a next speaker (Lerner 2003), but here T does not take the floor. Following another period of silence and as L begins to speak again (line 27), T nods. This nod can be interpreted as a very minimal floor-take from T, deferring speaking rights back to L. L is therefore nominated as speaker again,

floor-take from T, deferring speaking rights back to L. L is therefore nominated as speaker again, positioning him as responsible for driving the interaction forward. There are two further occasions (lines 33 and 35–36) where T could take a next turn but similarly does not. Strikingly, it is following these three occasions that L segues into the style of narrator from Walking with Beasts (lines 38–39), following an apparent marking of this transition in line 37. From an onlooker’s perspective,

following an apparent marking of this transition in line 37. From an onlooker’s perspective, the socially awkward segment of interaction corresponding to lines 1–37 might legitimately be described as a ‘failure of normal back and forth conversation’. However, as indicated by the above analysis, it would be misrepresentative to locate these issues as emanating solely from Leon. Teresa repeatedly defers the opportunity to initiate new conversational topics or otherwise progress the existing

defers the opportunity to initiate new conversational topics or otherwise progress the existing context forward, which in itself fails to uphold normative social practices (see Stivers and Robinson 2006). In this sequential context, L’s transition to narrator achieves (not necessarily consciously) a progression out of an otherwise socially difficult interactional rut. Of course, there probably are less impressionistically unusual methods by which to achieve this (such as initiating talk around

less impressionistically unusual methods by which to achieve this (such as initiating talk around a socially neutral shared topic such as the weather; see, for example, Jefferson 1988, p.433), but as the above indicates, unusual does not equate to meaningless or essentially dysfunctional. To describe Leon as a child who presents with a ‘failure of normal back and forth conversation’ (or alternatively a ‘fixated interest’ in Walking with Beasts) is therefore not a conclusion that does credit the

a ‘fixated interest’ in Walking with Beasts) is therefore not a conclusion that does credit the apparent social function and contextual significance of the phenomena at hand.

CONCLUSION In this chapter, a deconstructive critique of the dominant decontextualised signs-based clinical perspective on language and communication in ASD has been provided. Drawing upon critical perspectives that problematise the methods of description associated with psychiatric frameworks, I argued that it is logically unsustainable to describe communication behaviours as if mere decontextualised indices of underlying individual disorder. Moreover, I suggested that the glossing over of

indices of underlying individual disorder. Moreover, I suggested that the glossing over of context when interpreting and describing such behaviours may contribute to damaging representations of diagnosed individuals, which both overlook communicative competency and underestimate capacity for social participation. As was demonstrated, it is possible to generate alternative contextualised accounts of such phenomena. These have the potential to broaden discourses around ASD, and moreover underpin

of such phenomena. These have the potential to broaden discourses around ASD, and moreover underpin professional practices oriented towards interactional participation rather than remediation of individual deficit (Muskett et al. 2010). Whilst many within critical psychology and psychiatry would positively emphasise the importance of broadened perspectives on psychiatric disorders, the potentially negative consequences of the hegemonic position on language and communication in ASD cannot be

negative consequences of the hegemonic position on language and communication in ASD cannot be understated. Critical psychologist Thomas Teo (e.g. 2010) problematises unitary interpretations of human activity and ability that may negatively impact upon groups when ‘equally plausible interpretations of the data are available’ (Teo 2010, p.296). Above, I argued that the dominant interpretation of language and communication in ASD may reduce scope for attributing meanings to communication

of language and communication in ASD may reduce scope for attributing meanings to communication behaviours. I also empirically demonstrated, in Teo’s words, an ‘equally plausible interpretation’ of two examples of such behaviours. As Teo argues: Interpretations of inferiority, or problematisations […], are never determined by empirical results; yet, they have a negative impact on the Other. Thus, interpretations are the actions of a subject against an object that one must label as violent. (Teo

interpretations are the actions of a subject against an object that one must label as violent. (Teo 2010, p.298). I argue that such violence in interpretation, even if inadvertent, is a risk inherent in application of any unitary framework to describe an individual’s competencies and needs. As explored throughout this chapter, the repertoires offered by psychiatric discourses and the profound cultural importance of language and communication add layers of complexities – and therefore risks – to

importance of language and communication add layers of complexities – and therefore risks – to this base position. Hence, whilst I have not considered how the above arguments interface with other critical and radical representations of ASD, a clear congruence between this chapter and others in this volume is its reflexive questioning of dominant clinico-medical discourses about the condition. After all, as long as theorising of the diagnosis remains ‘silo-ed’ within the frameworks of

After all, as long as theorising of the diagnosis remains ‘silo-ed’ within the frameworks of description and causation offered by contemporary psychiatry and developmental psychopathology, representations of those who live with the label will remain unduly restricted.

that indicate a prerequisite or supporting skill met mastery should be transferred to the Skills Tracking Chart which provides the assessor with a visual reference of the learner’s progress (Sundberg 2008).

The VB-MAPP Guide. The VB-MAPP Guide is the user manual for the VB-MAPP assessment. It provides background information on the overall assessment; a brief introduction to B. F. Skinner’s Verbal Behavior (1957); assessment tool administration guidelines; scoring instructions for the Milestones, Barriers, and Transition Assessments; and a guide for program development including suggested goals and objectives for Individualized Educational Plans (Sundberg 2014). An introductory review of verbal

objectives for Individualized Educational Plans (Sundberg 2014). An introductory review of verbal behavior is provided in the VB-MAPP Guide to orient the administrator to the necessary concepts of verbal behavior that are required to complete the assessment. The administration guidelines describe general strategies to increase the effectiveness of the assessment pro-cess. The scoring instructions provide additional information regarding the skill being assessed such as appropriate sample

provide additional information regarding the skill being assessed such as appropriate sample materials, an example of how to present the skill, and specific criteria for scoring. Suggested learning objectives are separated into levels that correspond to the levels on the Milestones Assessment (Sundberg 2014).

Historical Background The VB-MAPP is based on Skinner’s Verbal Behavior (1957). Skinner used the term verbal behavior intentionally to differentiate his theory from more traditional theories of speech and lan-guage development. He wrote that the term speech was too limiting in that it excluded other types of communication such as sign language, exchanges via pictures, and writing. He also pro-posed that the word language was too broad as it encompassed entire languages (e.g., English).

pro-posed that the word language was too broad as it encompassed entire languages (e.g., English). Traditional theories of language are broken pri-marily into three categories: receptive language, expressive language, and pragmatic language. However, Skinner identified several specific com-ponents of verbal behavior, referred to as verbal operants. Skinner categorized verbal behavior into two main categories – the behavior of the speaker and that of the listener (1957). The VB-MAPP assesses

main categories – the behavior of the speaker and that of the listener (1957). The VB-MAPP assesses speaker behavior across sev-eral verbal operants including mands, tacts, intraverbals, echoics, motor imitation as related to sign language, textual, copying a text, and transcription. The VB-MAPP also assesses for listener skills such as following instructions (Sundberg 2008).

Psychometric Data The VB-MAPP is a criterion-referenced assess-ment (Sundberg 2014). Criterion-referenced assessments are designed to provide information regarding a leaner’s performance on specific test-ing items over the course of time in order to identify progress (Powers et al. 2014). Although the VB-MAPP provides age ranges for each mile-stone skill level, the assessment is not designed to provide a standardized score, and therefore a limitation of this assessment tool includes the

to provide a standardized score, and therefore a limitation of this assessment tool includes the inability to compare the learner’s scores to their same-aged peer group.

The Milestones Assessment. The Milestones Assessment Scoring Form is a color-coded visual grid that represents each of the three skill levels. Each level contains columns with a maximum score of 5 for each of the relevant developmental domains assessed in that level. Each individual milestone score is transferred to the Milestones Assessment Scoring Form and represented on the visual grid as either a blank (0), partially filled (1/2), or fully filled (1) scoring box. The total sum of each skill

a blank (0), partially filled (1/2), or fully filled (1) scoring box. The total sum of each skill domain area across all three levels is then combined to determine the total assessment score which has a maximum score of 170. Progress is demonstrated and tracked on the Scoring Form for up to four testing administrations.

The EESA. The EESA is initially scored sepa-rate from the Milestones Assessment; however, the EESA score is then incorporated into the Milestones Assessment Scoring. There are 100 possible points on the EESA. Points are assigned based on the production of correct sounds. Each item may be scored as (1) point for all correct sounds; (½) point for recognizable approximations with the correct vowel sounds, addition of syllables, and/or addition of consonant sounds; or (0) points for no response,

sounds, addition of syllables, and/or addition of consonant sounds; or (0) points for no response, unrecognizable approximations, omitted sylla-bles, and/or incorrect vowel usage (Sundberg 2014).

The Barriers Assessment. The scores from the VB-MAPP Barriers Assessment should be trans-ferred to the corresponding Scoring Form. The Barriers Assessment includes a Likert scale (0–4) in which assessor scores the child on 24 potential barriers to learning. A score of 0 on the Likert scale indicates the barrier is not a con-cern, while a score of 4 indicates the barrier is of significant concern. A scores of 2, 3, or 4 warrant additional intervention to prevent the barrier from becoming worse

A scores of 2, 3, or 4 warrant additional intervention to prevent the barrier from becoming worse (Sundberg 2014). There is a pos-sible total of 96 points on the VB-MAPP Barriers Assessment. Similar to the Milestones Assess-ment, each area has an individual grid to write the score for the current testing administration. Individual scores are transferred to the Scoring Form which is comprised of 24 individual smaller grids, separated by each barrier area, and can document scoring information for

individual smaller grids, separated by each barrier area, and can document scoring information for four testing administrations (Sundberg 2008).

The Transition Assessment. The scores from the VB-MAPP Transition Assessment should be represented on the Transition Assessment Scoring Form. The Transition Assessment provides a Likert scale (1–5) with scores ranging between 4 and 5 indicating that the child may benefit from opportunities in a mainstream learning envi-ronment with a low student to teacher ratio; how-ever, it is recommended to use behavioral technology in coordination with more typically teaching methods. Scores within the 0–2

behavioral technology in coordination with more typically teaching methods. Scores within the 0–2 range indicate that the child should primarily receive an individualized program with one-to-one direct instruction, use of behavioral technology, and suf-ficient oversight by qualified professionals (Sundberg 2014). Individual scores are trans-ferred to the Scoring Form which is comprised of 18 individual smaller grids, separated by each barrier area, and can document scoring informa-tion for four

smaller grids, separated by each barrier area, and can document scoring informa-tion for four testing administrations (Sundberg 2008).

Clinical Use The VB-MAPP assessment is designed to identify skill deficits for learners with speech and language delays that impact their learning, regardless of age and/or diagnosis. Although a comprehensive knowledge of applied behavior analysis (ABA) and B.F. Skinner’s Verbal Behavior (1957) are not required, it is important that the administrator understands verbal behavior at a basic level. Addi-tionally, assessors should be able to identify any unintentional influences on responding evoked

assessors should be able to identify any unintentional influences on responding evoked by inappropriate prompting procedures. Information obtained through the assessment will be beneficial for parents and educators in determining the learner’s skill acquisition needs and barriers to learning, which guides the learner’s educational team with planning for the individualized educa-tional needs of the child.

See Also ▶Applied Behavior Analysis (ABA) ▶Intraverbals ▶Mands ▶Reinforcement ▶Skinner’s Verbal Behavior ▶Tact ▶Verbal Behavior  Verbal Communication Andrea McDuffie MIND Institute University of California-Davis, Sacramento, CA, USA  Synonyms Fluent speech; Functional speech; Spoken language  Definition Verbal communication refers to the production of spoken language to send an intentional message to a listener. Verbal and nonverbal communication abilities are considered to represent a core

to a listener. Verbal and nonverbal communication abilities are considered to represent a core deficit in the diagnosis of autism. Indeed, the presence of fluent spoken language (in the form of regular and nonimitative use of multiword utterances) during the preschool years is a robust predictor of posi-tive long-term outcomes for children with autism. In the research literature, the acquisition of fluent spoken language is sometimes referred to as func-tional speech. The domain of verbal

of fluent spoken language is sometimes referred to as func-tional speech. The domain of verbal communica-tion can be divided into several component areas: semantics (vocabulary), syntax (grammar), and pragmatics (the social uses of language). Often, pragmatics is the area of spoken language that is most challenging for individuals with autism.

See Also ▶Expressive Language ▶Speech  Verbal Comprehension Andrea McDuffie MIND Institute University of California-Davis, Sacramento, CA, USA  Synonyms Language comprehension; Language understand-ing; Receptive language  Definition Verbal comprehension is the ability to understand spoken language. Early in typical development, a relative advantage of verbal comprehension over spoken language ability is observed when lan-guage abilities are measured using both parent report and direct

ability is observed when lan-guage abilities are measured using both parent report and direct assessment measures. An atypi-cal profile of language comprehension and pro-duction has been reported for young children with autism by several groups of researchers. Two atypical profiles have been described. In one pro-file, the relative advantage of receptive over expressive language is decreased (i.e., the receptive-expressive gap is smaller) for children with a diagnosis of autism, but not PDD. In

the receptive-expressive gap is smaller) for children with a diagnosis of autism, but not PDD. In the other profile, young children with autism actually demonstrate lower age-equivalent scores for lan-guage comprehension than they do for produc-tion. Many common assessment instruments include subtests designed to measure verbal com-prehension of language, including the Vineland Adaptive Behavior Scales, the infant subscale of the MacArthur-Bates Communicative Development Inventory, the Preschool

the infant subscale of the MacArthur-Bates Communicative Development Inventory, the Preschool Language Scales, and the Mullen Scales of Early Learning. Other authors report that, in slightly older children with autism, verbal comprehension no longer lags behind expressive language in that standard scores for language comprehension are found to be commensurate with scores for spoken lan-guage. It has been suggested that the comprehen-sion of language in a conversational context may provide

It has been suggested that the comprehen-sion of language in a conversational context may provide challenges for individuals with autism that are not present within a standardized testing context. For example, the need to respond to non-verbal cues that support semantic meaning may interfere with the verbal comprehension ability of individuals with autism.

Verbal Comprehension Index Shirley Poyau Clinical Psychology, University of Massachusetts Boston, Boston, MA, USA  Definition The Verbal Comprehension Index (VCI) is one of the indices representing the major components of intelligence in two of the Wechsler Intelligence Scales: the Wechsler Adult Intelligence Scale (WAIS) and the Wechsler Intelligence Scale for Children (WISC). It is thought to provide a rela-tively pure measure of verbal abilities, free of the influences of auditory attention

provide a rela-tively pure measure of verbal abilities, free of the influences of auditory attention and concentration. In the fourth edition of the WAIS (WAIS-IV), the VCI is comprised of three main subscales, with an additional supplemental scale: Similarities, which measures abstract verbal reasoning; Vocabulary, in which words must be defined singly, without context; Information, which tests general knowl-edge of history, art, culture, and politics; and Comprehension (supplemental), which

general knowl-edge of history, art, culture, and politics; and Comprehension (supplemental), which measures the ability to understand abstract or idiomatic expressions. In the fourth edition of the WISC (WISC-IV), the VCI consists of the Vocabulary, Similarity, and Comprehension subtests, with Information and Word Reasoning, a task which provides clues leading to a specific word, as sup-plemental scales. Research has consistently shown that children and adults diagnosed with Autistic Disorder

scales. Research has consistently shown that children and adults diagnosed with Autistic Disorder gen-erally obtain scores consistently lower on the VCI than they do on nonverbal indices of the WAIS. In contrast, individuals with Asperger’s disorder tend to earn their two highest subtest scores in Information and Vocabulary, reflecting the VCI as a relative strength.

See Also ▶Processing Speed Index  Verbal Dyspraxia ▶Verbal Apraxia  Verbal Fluency Laura B. Silverman Department of Pediatrics, University of Rochester, School of Medicine and Dentistry, Rochester, NY, USA  Synonyms Category fluency; Controlled oral word associa-tion; FAS-test; Letter fluency; Phonemic fluency; Semantic fluency; Word fluency

Definition Verbal fluency refers to the ability to spontane-ously generate as many words as possible within a given time period, according to a set rule. There are two types of verbal fluency that are commonly tested: phonemic fluency and semantic fluency. During a phonemic fluency task, a person is asked to generate as many words as possible beginning with a specific letter of the alphabet. During a semantic fluency task, the person is asked to generate as many words as possible from a specific

a semantic fluency task, the person is asked to generate as many words as possible from a specific semantic category (e.g., animals), irrespective of which letter of the alphabet the words begin with. Typically, there is a 60 s time limit to complete individual verbal fluency trials, and performance is the sum of correct words gen-erated within the allotted time period. A number of different errors can be calculated, including repetition and intrusion errors. Two underlying abilities govern verbal

be calculated, including repetition and intrusion errors. Two underlying abilities govern verbal fluency performance: clus-tering and switching. Clustering is the tendency to produce a set of words within a particular sub-category (e.g., farm animals on a semantic fluency task requiring animal words). Switching refers to the ability to shift from one subcategory to the next in order to maximize performance (e.g., shifting from farm animals to pets, once genera-tion of farm animals slows).

performance (e.g., shifting from farm animals to pets, once genera-tion of farm animals slows). Performance on ver-bal fluency tasks is associated with frontal and temporal lobe functioning. Verbal fluency is impaired in individuals with high-functioning autism when their performance is compared to people without ASD. Conversely, individuals with Asperger syndrome appear to have intact verbal fluency abilities.

See Also ▶Executive Function (EF)  Verbal Intelligence Michelle Dawson Hôpital Riviére des Prairies, Centre de recherche du CIUSS du Nord de l’île de Montréal et département de psychiatrie de l’Université de Montréal, Montréal, QC, Canada  Definition Verbal intelligence refers to specific human language-based skills which are considered to reflect latent general abilities. Despite historical disagreement about the precise place and funda-mental nature of verbal intelligence, widespread agreement

about the precise place and funda-mental nature of verbal intelligence, widespread agreement about its importance is evident in its omnipresence across all major hierarchical models of human intelligence. A person’s verbal intelligence is assessed through performance on one or more specific tests involving receptive and/or expressive spoken language. While these tests assess a limited range of specific verbal abilities, they are also intended to estimate, or to contribute to an estimation of, a

verbal abilities, they are also intended to estimate, or to contribute to an estimation of, a person’s general intelligence. Verbal intelligence tests contrast with performance or nonverbal intelligence tests, which may in fact require verbal skills (e.g., the comprehension of spoken instructions) but primarily are considered measures of other abilities, such as visuospatial perception or pro-cessing speed. Scores on verbal and performance intelligence tests can be combined to generate

pro-cessing speed. Scores on verbal and performance intelligence tests can be combined to generate full-scale IQ scores. The use of vocabulary tests in assessing verbal intelligence is nearly universal. In these tests, individuals are asked to demonstrate their under-standing of single words, for example, by provid-ing a spoken definition, by indicating one of several presented pictures in response to a spoken word, or by naming a single picture. Other kinds of verbal intelligence tests, often

to a spoken word, or by naming a single picture. Other kinds of verbal intelligence tests, often administered in addition to vocabulary tests, require specific skills in a variety of areas. Examples include identifying associations between words (verbal abstract reasoning), providing factual responses to general knowledge questions, and demonstrat-ing comprehension of social conventions and practical “common sense.”

As is evident in autism research, verbal intelli-gence scores can be derived in many different ways and from many different tests. A single test of vocabulary, such as the Peabody Picture Vocab-ulary Test (PPVT) or its variants, may be used. Alternatively, intelligence test batteries combine several verbal subtests to produce a verbal index score or Verbal IQ (VIQ), as in Wechsler Scales and the Stanford-Binet. Some intelligence test batteries also provide abbreviated versions in which verbal

Stanford-Binet. Some intelligence test batteries also provide abbreviated versions in which verbal intelligence scores are derived from a vocabulary subtest either alone or com-bined with another verbal subtest. It is important to note that tests which assess verbal intelligence are culture specific and evolve over time with respect to their specific content. Thus, whether a person has or has not been educated within a specific culture affects their measured verbal intel-ligence. What kinds of

been educated within a specific culture affects their measured verbal intel-ligence. What kinds of tests are or are not included when measuring verbal intelligence may also be subject to change. For example, Wechsler scales subtests once included as measures of VIQ were later indexed as measures of working memory (e.g., tests of arithmetic ability and digit recall). Verbal intelligence scores can be reported as IQs or other standard scores, as percentiles, age equivalents, or raw scores.

can be reported as IQs or other standard scores, as percentiles, age equivalents, or raw scores. Developmental tests designed for infants and preschool children (e.g., Mullen or Bayley scales) as well as tests of adaptive behavior (e.g., Vineland) are commonly used to assess autistic individuals and include language-related domain scores. However, these reflect developmental or adaptive levels rather than verbal intelligence. Further, the content of some language-related items in developmental

than verbal intelligence. Further, the content of some language-related items in developmental and adaptive tests may be similar to diagnostic signs of autism and therefore overlap with items in autism diagnostic instruments.

Historical Background Unusual patterns of verbal abilities are promi-nent throughout the first formal descriptions of autistic individuals. None of the 11 children described by Leo Kanner responded typically when spoken to; a majority presented as though deaf. The eight children who developed speech (with or without delays) and the three classified as mute did not, in Kanner’s view, fundamentally differ in their failure to engage in appropriate verbal communication. The speaking children

differ in their failure to engage in appropriate verbal communication. The speaking children displayed immediate and delayed echolalia, reversed pronouns, and a lack of spontaneous or typically meaningful sentences. Words were used in idiosyncratic or rigid and literal ways. Strong rote memory was evident, as were verbal strengths in naming objects, using plurals and tenses, and reciting information within formats or categories (e.g., poems, psalms, the alphabet, lists of animals, and

information within formats or categories (e.g., poems, psalms, the alphabet, lists of animals, and presidents). As Kanner (p. 243) observed, “long and unusual words were learned and retained with remarkable facil-ity.” In later papers, he acknowledged that seem-ingly irrelevant or nonsense utterances in fact conveyed meaning via metaphors and other atypical but decipherable verbal associations. While autistic children showed marked resis-tance to teaching, regardless they learned – displaying

While autistic children showed marked resis-tance to teaching, regardless they learned – displaying improvements over time including spontaneous nonechoed sentences with correct pronouns. Even “mute” autistics sometimes spoke in full sentences in emergencies (Kanner 1973).

The four autistic children described by Hans Asperger had verbal abilities at least as idiosyn-cratic as those encountered by Kanner. They spoke like adults, responded unpredictably or inappropriately – if at all – when spoken to, and were nearly impossible to teach. Both Kanner and Asperger relied far more on description than test scores in assessing verbal abilities; both doubted that autistic children’s intelligence could be fairly estimated via conventional testing. In 1945, Scheerer et

children’s intelligence could be fairly estimated via conventional testing. In 1945, Scheerer et al. reported an extended case study of “L,” an autistic savant (calendar calculation, music) who excelled in uninstructed memory of word, letter, and number sequences; and of names, places, and events associated with dates (e.g., birthdays). Several attempts to mea-sure L’s intelligence were made over time with varying degrees of success. As a child L – when testable – achieved normal range IQs but

time with varying degrees of success. As a child L – when testable – achieved normal range IQs but as an adolescent his Stanford-Binet IQ was 50. Verbal subtest performance ranged from strengths in immediate memory (of digits and sentences) to limited or idiosyncratic performance in tests of analogies, comprehension, reasoning, and vocab-ulary. For example, he defined “gown” as “some-thing I have on” (p. 9). Aspects of information he processed well were deemed outlandish and irrelevant, while

on” (p. 9). Aspects of information he processed well were deemed outlandish and irrelevant, while his unusual verbal abilities suggested that “rote memory without comprehen-sion of social contents and symbols may operate astoundingly well” (p. 14) to the point that impair-ments are concealed.

Anticipating important directions in later research, Scheerer et al. also questioned Kanner’s view of autism as primarily affective. Instead they proposed that L’s strengths and deficits were underpinned by a fundamental inability to under-stand or form concepts, symbols, and abstrac-tions. Similar views of autism flourished in the 1960s and 1970s, as summarized in Wing and Ricks’ 1975 overview of language and communi-cation in autism. Intelligence measures, including verbal tests, were

of language and communi-cation in autism. Intelligence measures, including verbal tests, were important in the emerging char-acterization of autism as a cognitive phenotype. Hermelin and O’Connor (1970) reported a series of seminal experiments in which autistic and non-autistic children were matched according to intel-ligence test scores. In a core group of autistic children whose mean age was 10 years, perfor-mance scores (Merrill-Palmer) were higher than verbal scores (PPVT). However, two

10 years, perfor-mance scores (Merrill-Palmer) were higher than verbal scores (PPVT). However, two children had verbal age equivalents above 10 years, well exceeding their performance scores. Hermelin and O’Connor found that autistic children orga-nize and recall verbal information atypically, with diminished dependence on meaning, categories, and context.

Within the same time period, Rutter and col-leagues published a series of papers reporting a longitudinal study of 63 individuals originally identified as autistic or “psychotic” in the 1950s. In adolescence (mean age 15 years), Wechsler scores ranged from untestable to above average. Performance (PIQ), VIQ, and full-scale means for testable individuals were all in the 70s – and in turn higher than receptive vocabulary (PPVT) and adaptive ability (Vineland) scores. More autistics had higher PIQ

receptive vocabulary (PPVT) and adaptive ability (Vineland) scores. More autistics had higher PIQ than VIQ compared to the reverse pattern, with a Block Design peak and a wide scatter of subtest scores (Lockyer and Rutter 1970). The highest verbal subtest score was Digit Span, the lowest Comprehension. Rutter (1966) noted that on verbal tasks, many autistics were untestable but a minority in contrast achieved their best scores, including three indi-viduals where this unexpected pattern was

contrast achieved their best scores, including three indi-viduals where this unexpected pattern was “very marked.” Yet these three, one of whom excelled in math and music, still had low Comprehension scores and a history of “very backward speech development” (p. 73). Across the full autistic sample, 31 spoke by age 5 and 7 developed speech afterward, as late as age 11; one-third received no education whatsoever, while a majority received 2 years or less. Individual VIQ scores changed (both

whatsoever, while a majority received 2 years or less. Individual VIQ scores changed (both increases and decreases) on average 17 points from IQ approximations recorded at preschool age, but the group mean did not change.

To investigate the extent and specificity of verbal impairments in the autistic cognitive phe-notype, Bartak et al. (1975) characterized and tested small groups of autistic and nonautistic language disabled (“dysphasic”) boys. All the children had PIQ scores of at least 70 and were matched on this measure. The autistic boys (mean age 7 years) were distinct from their controls in achieving mean Wechsler PIQ (94–97) which dramatically exceeded their Wechsler VIQ (67, when testable), PPVT (52),

Wechsler PIQ (94–97) which dramatically exceeded their Wechsler VIQ (67, when testable), PPVT (52), and Vineland (70) scores. Their distinctively scattered Wechsler subtest scores included a relative Block Design peak and a greater range within the verbal sub-tests, which included an extremely low Compre-hension score. Interpreting this and his earlier follow-up study, Rutter proposed a primary role for a severe distinctive verbal impairment in autism, with scattered PIQ subtest scores (e.g.,

role for a severe distinctive verbal impairment in autism, with scattered PIQ subtest scores (e.g., high Block Design, low Coding) speculated to result from test differences in verbal loading. A follow-up study of the boys in Bartak et al. (1975) into young adulthood found the autistics were distinctive in their trajectory of verbal abil-ities (Mawhood et al. 2000). Over time, the autis-tics’, but not the nonautistics’, Wechsler VIQ increased significantly – a group average of 16 points, with

but not the nonautistics’, Wechsler VIQ increased significantly – a group average of 16 points, with individual increases up to 50 points. The number of autistics who could be tested on all Wechsler subtests doubled (from 9 to 18, out of 19), while the PIQ-VIQ discrep-ancy was no longer significant. No subtest scores were reported. On PPVT, the autistic group also did significantly better over time, largely due to losses in the controls. While mean differ-ences between the two groups had

time, largely due to losses in the controls. While mean differ-ences between the two groups had diminished, the autistic adults displayed much higher variation in scores on the verbal tests (Wechsler VIQ, PPVT).

Starting in the 1980s, studies using false belief and other social-specific tasks proliferated, raising questions about appropriate matching strategies and instruments, and whether inconsistent results could be attributed to inadequate accounting for group differences in verbal intelligence (Bowler 2007, for an overview). Meanwhile, studies including autistic Wechsler subtest and PIQ-VIQ profiles slowly accumulated, with 16 collected in Siegel et al. (1996), who also reported a new study.

slowly accumulated, with 16 collected in Siegel et al. (1996), who also reported a new study. Overall, the PIQ-VIQ discrepancy pattern was inconsistent across studies. This is unsurpris-ing given that the studies spanned 31 years, included very small samples across different age ranges, had different inclusion criteria, used dif-ferent test versions, and encompassed different diagnostic definitions and practices. Nevertheless, Block Design robustly stood out as the highest Performance subtest

and practices. Nevertheless, Block Design robustly stood out as the highest Performance subtest score (all studies) and Com-prehension was similarly robust as lowest Verbal score (all but one study). The 1980s also marked the gradual introduc-tion of Asperger syndrome as a separate autistic spectrum diagnosis, a change formalized in the 1994 DSM-IV, followed shortly by Klin et al. (1995) report of no VIQ-PIQ discrepancy in autism, but a large Wechsler VIQ over PIQ dis-crepancy in Asperger

of no VIQ-PIQ discrepancy in autism, but a large Wechsler VIQ over PIQ dis-crepancy in Asperger syndrome. Ehlers et al. (1997) reported a similar result, with an Asperger subtest profile dominated by Verbal peaks (Vocabulary, Similarities, Information) and low scores in the Performance subtests Coding and Object Assembly.

Current Knowledge Empirical Findings from Verbal Intelligence Tests The diagnosis of autism is consistent with all possible levels of measured verbal intelligence. In other words, verbal intelligence in autism, as assessed via different standard measures, spans the full range from a VIQ of 150 or more to an assigned score of “untestable.” High variance with respect to specific verbal abilities is durably characteristic of autism within and across individ-uals, encompassing multiple dimensions,

durably characteristic of autism within and across individ-uals, encompassing multiple dimensions, and including sometimes dramatic incongruities between high and low abilities. Addressing such high variance by creating autism or autistic spectrum subgroups is frequently invoked as a high priority, but as yet, little consensus as to valid subgroups has emerged. Widespread dis-agreement over how and whether to distinguish Asperger syndrome from autism has led to a wel-ter of inconsistent findings

whether to distinguish Asperger syndrome from autism has led to a wel-ter of inconsistent findings regarding cognitive profiles, including patterns of verbal intelligence scores, across the autistic spectrum. DSM-IV autism subgroups, including Asperger syndrome, are now lumped together as a single autistic spec-trum diagnosis in the DSM-5, where “with or without language impairment” is one of several specifiers but a history of speech delay is not considered. However, regardless of diagnostic

specifiers but a history of speech delay is not considered. However, regardless of diagnostic confusion and numerous other confounds (see “Historical Background” above), some findings persist, including autistics’ difficulty with the Wechsler verbal subtest Comprehension. In a population-based study of school-aged children, Charman et al. (2011) found Comprehension scores signif-icantly below Wechsler subtest means across var-ious subgroups as well as in the full group of autistic children who

subtest means across var-ious subgroups as well as in the full group of autistic children who were testable. No other find-ing involving Wechsler subtests achieved such consistency in the broadly defined autistic spec-trum sample. Another persistent finding is adap-tive ability scores which are lower than measured verbal intelligence, a discrepancy that can be extreme in autistic individuals with average or high VIQ scores. For example, in a clinic-based sample of autistic spectrum children and

average or high VIQ scores. For example, in a clinic-based sample of autistic spectrum children and adoles-cents whose VIQ was at least 70, mean VIQ was 107 (range 70–150) in contrast with mean Vineland composite scores of 55 (range 25–79; Klin et al. 2007). Large individual variations in trajectories of specific verbal abilities over time have also been reported as characteristic of autism. In a follow-up to mean age 29, Howlin et al. (2004, p. 219) reported “considerable movement in ver-bal IQ

to mean age 29, Howlin et al. (2004, p. 219) reported “considerable movement in ver-bal IQ levels over time” in some individuals, with a small group-level improvement. Of the 68 autistics tested, 14 fell into the normal range of VIQ in childhood, while 32 scored at this level as adults. Thirteen of 31 individuals who as children had verbal intelligence scores of less than 30, or could not be tested at all, scored significantly higher as adults – nine of them in the normal range. Neither verbal

at all, scored significantly higher as adults – nine of them in the normal range. Neither verbal intelligence mea-sured in childhood nor development of speech by 5 years of age – a milestone popularly claimed to be crucial – was a good predictor of a range of adult outcomes. A later follow-up of the same sample to mean age 44 found high variance in VIQ-PIQ discrepancies (from VIQ 50 points lower than PIQ, to 38 points higher) and a “small but steady increase” in VIQ across timepoints in testable

PIQ, to 38 points higher) and a “small but steady increase” in VIQ across timepoints in testable individuals (Howlin et al. 2014).

In the same direction, Anderson et al. (2007) investigated verbal ability trajectories within childhood, starting from an original diagnosis of autism, PDD-NOS, or other developmental disability at age 2, to outcomes at a mean age of 9 years. Children were assessed with a mix of developmental and IQ tests. The main finding was higher variance in verbal ability outcomes in the autistic spectrum children, particularly those whose specific diagnosis was autism. In these children, “improvement can

particularly those whose specific diagnosis was autism. In these children, “improvement can range from minimal to dramatic” (p. 594) with many trajectories col-lected at either extreme. While group mean verbal abilities were lower for autistic than nonautistic children, the exceptionally wide range of autistic outcomes was such that a greater number of autis-tic children achieved average level or better verbal intelligence scores at age 9. Case studies of autistic individuals further add to the

better verbal intelligence scores at age 9. Case studies of autistic individuals further add to the picture of remarkable variance in verbal intelligence and apparent incongruities across numerous dimensions. Autistics who have little in the way of functional speech and are therefore classified as “nonverbal” may also have high mea-sured verbal intelligence. For example, Bonneh et al. (2008) report a Wechsler VIQ of 128 while Gernsbacher (2004) reports a PPVT standard score of 160, in case

report a Wechsler VIQ of 128 while Gernsbacher (2004) reports a PPVT standard score of 160, in case studies of minimally speak-ing autistic children tested respectively at 12 and 6 years of age. Conversely, a nonspeaking autistic adult is reported unscorable on PPVT, suggesting verbal intelligence so low it cannot be measured. However, he also has outstanding performance (estimated IQ of 140) on Raven’s Matrices – a general intelligence test which does not include verbal material yet for

on Raven’s Matrices – a general intelligence test which does not include verbal material yet for nonautistics requires verbal abilities. The same autistic adult demonstrates outstanding calculation skills whose acquisition, even at a much more basic level, would depend on verbal abilities in nonautistics (Anderson et al. 1999). An incongruity between very low or untestable VIQ and normal-range or high Raven scores has also been displayed by some autistic children (Dawson et al. 2007; Courchesne

high Raven scores has also been displayed by some autistic children (Dawson et al. 2007; Courchesne et al. 2015). The important question of how to fairly assess verbal intelligence in minimally speaking autistics, who in addition may have difficulty pointing, has belatedly appeared in the literature (Kasari et al. 2013), but studies are as yet sparse and preliminary.

Underlying Abilities and Theoretical Accounts With respect to early development, both echolalia and hyperlexia are well established as character-istic of autism and both indicate that autistics acquire verbal abilities in an atypical way. Autistics may enter into language by first learning its complex structure rather than by first learning its meaning, as is the typical pattern. For example, evidence suggests an early atypical developmen-tal pattern of discrepantly high expressive versus

evidence suggests an early atypical developmen-tal pattern of discrepantly high expressive versus receptive verbal abilities, at least in what has been considered the specific diagnosis of autism (e.g., Hudry et al. 2010). However, find-ings may be in part dependent on adaptive and parent-report measures, and again are within a context of high individual variance across all ver-bal measures. Beyond early development, where autistics’ verbal abilities may be difficult to assess, numer-ous findings

early development, where autistics’ verbal abilities may be difficult to assess, numer-ous findings have confirmed that autistics of all ages perceive, organize, and recall verbal information in atypical ways. Autistics are characterized by strong phonological processing of language and by enhanced perception of speech. In neither case is there a consistently straightforward or predictable trade-off with other aspects of verbal information processing. Exceptional absolute pitch for speech, for

with other aspects of verbal information processing. Exceptional absolute pitch for speech, for instance, has been found in an autistic individual with a characteristic delay in speech development – but the person went on to become fluent in numerous languages (Heaton et al. 2008). In addition, although autistics may organize and recall verbal information without using typi-cal categories, they are also capable of forming categories when instructed to. The typicality, or not, of category

they are also capable of forming categories when instructed to. The typicality, or not, of category formation displayed by autistics thus has depended on specific task instructions (Bowler 2007). Similarly, autistics’ use of context when processing verbal information atypically encompasses both local (e.g., immediately proxi-mate) and global (e.g., sentence-level) contexts. This does not imply an inability to use wider contexts but does demonstrate that more immedi-ate contextual possibilities

inability to use wider contexts but does demonstrate that more immedi-ate contextual possibilities are not discarded via typically mandatory top-down processes (Henderson et al. 2011). In turn, this is consistent with the idiosyncratic use of language in autism, including unusual vocabulary and word associa-tions. Further in this direction, autistics show a consistent pattern of difficulty with episodic but not semantic verbal memory, and also diffi-culty with organizing verbal information into

but not semantic verbal memory, and also diffi-culty with organizing verbal information into expected, typical narratives (e.g., Diehl et al. 2006). Autistics would therefore be expected to perform poorly on tests which require verbal information to be organized into conventional or “common sense” type narratives, as in the Wechsler Comprehension subtest. Overall, existing findings suggest that aspects of verbal information which automatically take precedence in nonautistic information processing

of verbal information which automatically take precedence in nonautistic information processing hierarchies do not play the same role in autistics (Mottron et al. 2006). For autistic individuals, depending on circumstances and task demands, this may result in both advantages and disadvan-tages, which in turn are evident in uneven devel-opment and verbal intelligence profiles within and across individuals.

Future Directions • Individuals diagnosed with neurodeve-lopmental genetic syndromes (e.g., fragile X, Williams syndrome) may also meet autism criteria on various instruments. Whether these individuals are in fact autistic is an increasingly important research question which cognitive profiles, including verbal intelligence mea-sures, may help address.

• The challenge of fairly testing verbal intelli-gence in all autistics, including those with atypical or minimal speech, was apparent in the first published descriptions of autism. Despite progress in technology – touch screens, smart phones, tablets, applications – this area remains neglected.

• New technologies should also be explored as opportunities for autistics to develop and dis-play verbal abilities. For example, given the opportunity, autistics may demonstrate their ability to learn and adapt technologies for communication in both expected and unexpected ways.

• There has been little interest in the atypical kinds, quantities, and arrangements of infor-mation – including verbal information – from which autistics learn well. Availability (or not) of verbal information remains overlooked as a plausible factor in the high variance of verbal abilities in autism.

• Autistics with excellent adult outcomes, but atypical development and patterns of specific verbal abilities, have appeared in the literature throughout autism research history. Yet these individuals, and the patterns of verbal ability associated with successful autistic outcomes, remain understudied.

• The relationship between speech delay and later verbal intelligence, including in adult-hood, remains understudied. Whether longer or shorter or no speech delay, or for that matter precocious speech, consistently leads to better or worse verbal (and other) autistic outcomes is an important but neglected research question.

• High variance in verbal intelligence is widely regarded as an obstacle to autism research which ideally should be eliminated through subgrouping. However, attempts to compose consensual autism subgroups have not been successful. One future direction is to consider high variance in verbal outcomes not as an impediment to research but as informative about the nature of autism and the possibilities of autistic individuals.

See Also ▶Nonverbal Intelligence ▶Savant Skills (in Autism) ▶Vocabulary  Verbal Semantic Coherence Laura B. Silverman Department of Pediatrics, University of Rochester, School of Medicine and Dentistry, Rochester, NY, USA  Synonyms Weak central coherence  Definition Verbal semantic coherence refers to the ability to use the broader context of a story or sentence, and the semantic relationships between words to aid understanding and interpretation of spoken and written language. The concept of

words to aid understanding and interpretation of spoken and written language. The concept of verbal semantic coherence stems from Weak Central Coherence Theory, which posits that individuals with autism spectrum disorder (ASD) have a cognitive style that involves detail-focused processing, rather than global or gist processing of information. In other words, people with ASD are more likely to see the individual trees rather than the forest. This detail-focused cognitive style has been observed

the individual trees rather than the forest. This detail-focused cognitive style has been observed while individuals with ASD engage in verbal tasks. Examples of impaired verbal semantic coherence in autism include difficulties using sen-tence context to interpret the meaning of homo-graphs and heteronyms (words with one spelling, but two meanings and two pronunciations), poor recall of semantically related words, difficulties with pragmatic language, and poor construction of a narrative.

See Also ▶Auditory Verbal Learning ▶Pragmatics ▶Semantic Memory ▶Weak Central Coherence  Verbalization ▶Speech  Versed ▶Midazolam  Very Early-Onset Schizophrenia ▶Childhood Schizophrenia  Vestibular Function in Children with Autism Ruth Van Hecke1 and Leen Maes1,2 1Department of Rehabilitation Sciences, Ghent University, Ghent, Belgium 2Department of Otorhinolaryngology, Ghent University Hospital, Ghent, Belgium  Synonyms Equilibrium; Sense of balance  Definition Vestibular function refers to

Ghent, Belgium  Synonyms Equilibrium; Sense of balance  Definition Vestibular function refers to the ability to maintain balance and postural control, a stabilized vision during head movements, and spatial orientation. The vestibular system is a complex sensorimotor system which comprises the peripheral vestibular apparatus or labyrinth, the postural muscles, visual system, brainstem, cerebellum, and the cortex. The peripheral portion of the vestibular system is located in the inner ear and

and the cortex. The peripheral portion of the vestibular system is located in the inner ear and consists of three semi-circular canals and two otolith organs (i.e., saccule and utricle) providing complementary information about rotational and translational head movements relative to gravity. It gives together with centrally integrated proprioception and visual stimuli an internal representation of the environment and movements through it. In addition, a stabilized vision during head movements

of the environment and movements through it. In addition, a stabilized vision during head movements and postural control are reflexively maintained by the vestibulo-ocular, vestibulospinal, and vestibulo-collic reflexes. In case of a dysfunction in this complex system, pos-tural imbalance and dizziness are often the most reported complaints in adults. In contrast, these symptoms are frequently underestimated in chil-dren, since children are often not able to commu-nicate their complaints properly

in chil-dren, since children are often not able to commu-nicate their complaints properly and a vestibular impairment often has a different clinical course compared to that in adults. Nevertheless, when a vestibular dysfunction occurs at birth or in early stages of life, an impact on motor, cognitive, psychosocial, and educational performances may be expected.

Similar to children with a severe vestibular dysfunction, children with autism often present with vestibular-related complaints such as avoidance behavior, gross and fine motor impairment, static and dynamic postural insta-bility, delayed motor milestones, and/or poor motor coordination. Additionally, compared to typically developing children, research indicated that postural performances in children with autism were found to be the most aberrant in conditions were they could rely on their

children with autism were found to be the most aberrant in conditions were they could rely on their vestib-ular input only, which is also suggestive for a vestibular deficit. Therefore, it has been suggested that a (peripheral or central) vestibu-lar dysfunction may contribute to the phenotype or behavioral features in a subset of children with autism spectrum disorder, which has been supported by studies using vestibular function testing in this population. Moreover, some chil-dren with autism

studies using vestibular function testing in this population. Moreover, some chil-dren with autism are known to have a preoccu-pation with spinning objects or repetitive movements, such as spinning or shaking their head or have difficulties in integrating vestibular input. However, due to heterogeneous findings in studies mainly focusing on the function of the horizontal semicircular canals only (only one fifth of the peripheral vestibular system), a more extensive and objective elaboration on

(only one fifth of the peripheral vestibular system), a more extensive and objective elaboration on whether an accompanying vestibular dysfunc-tion is present in this population is highly recommended.

See Also ▶Sensory Impairment in Autism ▶Vestibular System in Autism  Vestibular System in Autism Edward Ritvo UCLA School of Medicine, Los Angeles, CA, USA  Definition Vestibular System A system in the body that is responsible for maintaining balance, posture, and the body’s ori-entation in space. This system also regulates loco-motion and other movements and keeps objects in visual focus as the body moves. The vestibular system is comprised of the ves-tibulo-cochlear nerve, and those parts of

body moves. The vestibular system is comprised of the ves-tibulo-cochlear nerve, and those parts of the brain that interpret and respond to information derived from these structures.

Historical Background Abnormal modulation of sensory input (over and under responding) has been a pathognomonic fea-ture of autistic disorder (AD) since it was first described by Kanner (1968). Of particular note is the fact that response levels may not remain static, but can alternate over time in the same individual. This characteristic, called “Perceptual Inconstancy” (Ornitz and Ritvo 1968) underlies the diagnostic criteria for AD listed in the DSM-IV-TR (American Psychiatric Association

underlies the diagnostic criteria for AD listed in the DSM-IV-TR (American Psychiatric Association 2000) as, “stereotyped and repetitive motor man-nerisms” (e.g., hand or finger flapping or twisting, or complex whole-body movements). The pro-posed DSM V (American Psychiatric Association 2010) lists these symptoms as, “Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific

of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).” Abnormal modulation affects all sensory sys-tems (Ritvo 2006; Leekam et al. 2007; Schoen et al. 2009, DSM-IV-TR and proposed DSM 5, Reynolds and Lane 2008; Minshew and Hobson 2008), for example, many AD infants and children are initially referred for evaluation of possible deafness. These

many AD infants and children are initially referred for evaluation of possible deafness. These children may not respond at times to speech or loud noises, and at other times cover their ears and cry in response to soft sounds. Alternating sensitivity to temperature is shown in AD children who demand wool sweaters and heavy coats in the summer, but will only wear light skimpy clothes in the winter. Response to pain varies from ultra sensitive to nonexistent, even with major injuries. Visual

Response to pain varies from ultra sensitive to nonexistent, even with major injuries. Visual detailed scrutiny may alternate with bumping into things as if they were not seen. Hypersensitivity to the texture of food is responsible for the often-reported behavior of spitting out lumpy items, a problem many par-ents solve intuitively by using a blender. And, lastly, many AD children become preoccupied with obtaining certain specific odors, while at other times will ignore noxious fumes.

Current Knowledge Symptoms Due to Abnormal Modulation of Vestibular Input Under responsiveness to vestibular input leads to several types of repetitive behaviors. For example, many children and adults with AD spend hours each day on swings, jumping on trampolines, and twirling themselves around. They do this without becoming dizzy or nauseous, and report that it is “soothing” and “comforting” (Ritvo 2006). Staring at rotating objects such as phonograph records and fans, head shaking, body

(Ritvo 2006). Staring at rotating objects such as phonograph records and fans, head shaking, body rocking, and finger flapping in front of the eyes are other com-mon ways AD individuals induce nystagmus and vestibular input. Over responsiveness to vestibular input leads to the opposite kind of behaviors. Maintaining rigid postures, placing themselves in unusual prone or upside down positions, refusing to get out of bed, and hiding in dark places are behaviors that AD individuals use to diminish

to get out of bed, and hiding in dark places are behaviors that AD individuals use to diminish vestibular input and maintain equilibrium. Symptoms due to both over and under modu-lation of vestibular input, like those in the other sensory systems, tend to decrease in frequency and duration with age, although, in some, they remain lifelong (Ritvo 2006).

Neurophysiologic Studies Several neurophysiologic studies begun in the 1970s attempted to identify objective measures of abnormal vestibular processing. One pilot study identified a subset of AD children who showed decreased post rotator nystagmus (PRN) in the light, when visual fixation is possible, but not in the dark (Ritvo et al. 1969). However, replication studies failed to identify specific PRN differences between large groups of AD and age and sex matched non-AD children that could be of

PRN differences between large groups of AD and age and sex matched non-AD children that could be of diagnostic significance (Ornitz 1970). A review of the recent literature failed to find subsequent stud-ies that identified specific pathology in the vestib-ular system (peripheral or central) pathognomonic of autism, but concluded that more research in this area is warranted by previous findings (Rogers and Ozonoff 2005; Reynolds and Lane 2008).

Therapeutic Implications of Abnormal Vestibular Modulation Based on the clinical observations of Jane Ayers in the 1970s (Ayres 1974), occupational therapists and sensory integration therapists developed interventions aimed at assessing and improving symptoms of abnormal vestibular modulation. These interventions have gained worldwide appli-cation based on positive clinical experience, but to date no objective studies of their efficacy have been published (Kinnealey et al. 1995; Watling et al.

no objective studies of their efficacy have been published (Kinnealey et al. 1995; Watling et al. 2001; Tomchek and Dunn 2007).

Victimization Guillermo Montes St. John Fisher College, Rochester, NY, USA  Definition There is no consensus on what victimization is or what it should cover. The dictionary definition includes victimization of crime, of unjust punish-ment and of fraud. Victimization is often classified by the source of the offense or the nature of the attack. Two forms of victimization receive dispro-portionate amount of attention by the research community, child abuse and peer victimization or bullying, while

of attention by the research community, child abuse and peer victimization or bullying, while other forms of victimization are not systematically studied. This entry deals with those unstudied sources of victimization fol-lowing the dictionary definition of crime, unjust punishment, and fraud.

Historical Background Although undoubtedly victimization of persons with ASD is as old as the disease itself, there has been and continues to be an almost complete paucity of research on the topic.

Current Knowledge Much of what is known about criminal victimiza-tion is not specific to persons with ASD. People with disabilities are two to three times more likely to be victims of violent crime (rape/sexual assault, robbery, simple, and aggravated assault). In addi-tion, people with ASD are also at higher risk of financial exploitation (Volkmar et al. 2005). About 15% of crime victims with disabilities report that they suspect they were targeted because of their disability (Harrell and Rand

report that they suspect they were targeted because of their disability (Harrell and Rand 2010). Because of their inability to perceive or understand social clues, people with ASD have been called the “per-fect victims” (Debbaudt 2002). Victimization by direct caregivers (e.g., par-ents) is often treated as a form of child abuse, although such victimization may occur beyond the age of 18. Peer victimization has been studied repeatedly mostly among children with ASD in the school context (see

victimization has been studied repeatedly mostly among children with ASD in the school context (see “▶Bullying”). Little is known about peer victimization among adults with ASD. Victimization by educators and professional caregivers was recently documented in a report from the US Government Accountability Office on the use of seclusions and restraints that resulted in deaths or abuse (United States Government Accountability Office 2009). Given that there is no systematic research on victimization

Government Accountability Office 2009). Given that there is no systematic research on victimization by school personnel, the prevalence of this form of victimi-zation is unknown. Additionally, persons with ASD can be victim-ized by law enforcement. When the police comes into contact with persons with ASD spectrum disorders because they are witnesses, perpetrators, or victims of crime, untrained officers can easily mistake ASD symptomatology for suspicious behavior. ASD symptomatology (e.g.,

officers can easily mistake ASD symptomatology for suspicious behavior. ASD symptomatology (e.g., absence of eye contact, repeating what an officer says, not understanding body language, not following commands, confessing to crimes they did not commit, persistent interest on aspects of a situa-tion others believe irrelevant) can be easily con-fused with indications of guilt by officers unfamiliar with ASD during informal questioning, arrest, and formal interrogation. Sometimes such mistakes may

with ASD during informal questioning, arrest, and formal interrogation. Sometimes such mistakes may lead to criminal convictions of innocent persons with ASD disor-ders; other times the information provided by a person with ASD is thought to be unreliable (Debbaudt 2002). Consequently, the Federal Bureau of Investigation and a number of ASD advocacy organizations (in particular the Autism Society) are working with police and other first respondents to educate them about ASD (Debbaudt and Rothman

are working with police and other first respondents to educate them about ASD (Debbaudt and Rothman 2001).

As is the case for many other people with incurable diseases, many persons with ASD and their families become victims of those who mar-ket untested remedies and effective treatments or cures for ASD. Distinguishing between legiti-mate and responsible complementary and alter-native medicine (CAM) practice and quackery can be very difficult, particularly for desperate parents of children with ASD at a time when the use of CAM is increasing among the general population. Quackery is characterized

at a time when the use of CAM is increasing among the general population. Quackery is characterized by exag-gerated claims about the likely benefits of the product or service for the typical patient, as well as its higher likelihood to result in financial, emotional or physical harm, including unwarranted delays in seeking appropriate diag-nosis and treatment. In the United States, both the Federal Drug Administration and the Federal Trade Commis-sion have responsibility for consumer protection,

Drug Administration and the Federal Trade Commis-sion have responsibility for consumer protection, yet both agencies lack adequate resources to police the many attempts to promote services and therapies of questionable value to people with ASD. In rare cases, the FDA or the FTC has sent warnings to marketers of unapproved therapies or products (e.g., unapproved chelation products (Federal Drug Administration 2010)). Yet, many CAM approaches are outside of the jurisdiction of the FDA and current

2010)). Yet, many CAM approaches are outside of the jurisdiction of the FDA and current regulatory practice in the United States requires the govern-ment to prove evidence of harm. Additionally, many of these approaches are not subject to adverse event reporting of any kind. Thus, it is unsurprising that many cases of misrepresenta-tion of alleged benefits are not investigated or prosecuted, as they often go unreported by the victims. As in other forms of victimization, there are no scientific

they often go unreported by the victims. As in other forms of victimization, there are no scientific studies on the prevalence and nature of financial, emotional, or physical harms that occur due to quackery, nor any studies to determine if people with ASD or their close relatives can distinguish between legitimate CAM and quackery. There are however many published accounts showing that quackery and charlatanism related to ASD therapies and “cures” is widespread (Fitzpatrick 2008; Offit 2008;

and charlatanism related to ASD therapies and “cures” is widespread (Fitzpatrick 2008; Offit 2008; Schreibman 2007). Finally, persons of ASD are also victims of fraud when researchers commit scientific mis-conduct on ASD-related studies. The most famous cause was the Andrew Wakefield’s 1998 study published in The Lancet expressing concerns that the MMR vaccination was linked to ASD. The dissemination of the claim through the media resulted in a loss of confidence in the MMR vaccination program in

of the claim through the media resulted in a loss of confidence in the MMR vaccination program in the United States and United Kingdom. For many families with children with ASD, the study also became a justification to seek treatment and cures outside of the medical establishment, thus delaying appropriate and timely treatment and exposing them to an increased risk of financial, emotional, and physical harm. In addition, many families decided not to vaccinate children who did not have ASD for fear

harm. In addition, many families decided not to vaccinate children who did not have ASD for fear of contracting ASD. In 2004, many of the Dr. Wakefield’s coauthors retracted the problematic interpretation (Murch et al. 2004). The UK’s General Medical Counsel erased Dr. Wakefield’s name from the medical register in 2010 and the original paper was sub-sequently retracted from the Lancet (Greenhalgh 2010).

Future Directions There is no question that persons with ASD are at higher risk of various forms of victimization, yet scientific studies have not been systematically conducted to determine the prevalence of the var-ious types of victimizations for persons with ASD and their families. With the exception of bullying and child abuse, there are no systematic efforts to determine the prevalence, causes, and remedies of the various forms of victimization presented in this entry. People with ASD will

and remedies of the various forms of victimization presented in this entry. People with ASD will continue to be at higher risk of these various forms of victimiza-tion until studies elucidate their plight.

See Also ▶Bullying  Video Feedback and Feedforward Peter W. Dowrick1 and Nur‘aini Azizah2 1University of Auckland, Auckland, New Zealand 2Faculty of Psychology, Universitas Islam Negeri Sunan Gunung Djati, Bandung, Indonesia  Definition Video feedback entails the replay of a recorded event with the intent that participants will learn improved behavior for that situation. For exam-ple, a child may be offered a choice of a toy bear and a toy truck with which to play, but then pushes the toys

may be offered a choice of a toy bear and a toy truck with which to play, but then pushes the toys away without making a choice. Simply replaying the video would be feedback and prob-ably ineffective, so a replay would be used as an opportunity to teach an adaptive response. Thus the feedback itself might not be educational or therapeutic, but may serve to present “teaching moments,” which may be effective if develop-mentally appropriate. Video feedforward entails the portrayal of an event as a

effective if develop-mentally appropriate. Video feedforward entails the portrayal of an event as a future success, beyond current capabil-ity, achieved through filming and editing tech-niques. That is, a person will see a video of themselves succeeding in something where they normally fail. For example, the child above would be also be offered, say, a truck, filmed from a different angle, maybe even prompted to say “thank you.” The separate shots are then edited together to show the child

even prompted to say “thank you.” The separate shots are then edited together to show the child adaptively choosing and receiving a toy, in this case, a truck. So the “teaching moment” is shown on video and the feedback errors are not used. Thus feedback is effective when it allows feedforward to take place, either through addi-tional training or therapy or through appropriately recorded and edited video. With individuals for whom learning comes easily, just seeing and hear-ing the video may be

video. With individuals for whom learning comes easily, just seeing and hear-ing the video may be enough to create spontane-ous feedforward and future adaptive responses to the event.

Historical Background The first use of the term “feedback” was in the 1920s, in reference to that dreadful oscillation in sound systems turned in on themselves. Then feed-back progressed through physics and biology, later psychology and education, to reference information about the impact on the environment of systems and organisms, and then the potential influence of that information in a “feedback loop.” The Concise Oxford Dictionary (2006, p. 521) defines feedback in psychology and biology as

loop.” The Concise Oxford Dictionary (2006, p. 521) defines feedback in psychology and biology as the “modification or control of a process or system by its results or effects.” A common biological example is the blink reflex, by which the eyelid moistens a drying eyeball. Examples in psychology are seldom so clear cut. Feedback is routine in sports, where a video may be shown with analysis of what worked and more emphasis on what did not work. Any feedback may be disputed or have a negative

what worked and more emphasis on what did not work. Any feedback may be disputed or have a negative emo-tional impact. To be used constructively, is it still feedback? Or does it become “feedforward?” Feedforward is even more recent terminology. Although the terminology was not used, the con-cept had its most famous exploration in the 1940s by British air force scientists, led by Norbet Wie-ner. London was being attacked by German air-craft who tried to make their approach unpredictable with

London was being attacked by German air-craft who tried to make their approach unpredictable with sudden changes of speed and direction (see Galison 1994). Wiener developed systems to predict the unpredictable so that a missile could be launched to intercept the plane on its future path. It was not until the 1970s that cybernetics embraced feedforward (e.g., Lee 1980) and psychology flirted with it (Björkman 1972). In cognitive behavioral psychology, feedforward is recognized as a personal image

(Björkman 1972). In cognitive behavioral psychology, feedforward is recognized as a personal image of future successful behavior, not previously achieved (Dowrick 1991, 2012).

Current Knowledge Video feedback. While there are many studies using different forms of video with individuals with autism, there are not many using video feed-back. For example, a review in 2005 (Ayres and Langone 2005) of 15 studies for social and daily living skills in children with autism, all used var-iations of video modelling, not feedback. There were peer and self-models, adults, multimedia, and point-of-view modeling. All were successful, although it should be noted that most included

and point-of-view modeling. All were successful, although it should be noted that most included other strategies such as discussions and prompts. None used video feedback. More recently, a study by Robinson (2011) found video feedback effec-tive in interventions with the communication skills of four young boys with autism – when the video was used with paraprofessionals delivering the skills training – not used with the children. Lofthouse et al. (2012) list 19 “complementary and alternative

– not used with the children. Lofthouse et al. (2012) list 19 “complementary and alternative treatments for autism,” from mel-atonin and B12 to acupuncture and massage. There is no mention of “video feedback,” either because it is “mainstream” rather than “alternative” or because there are no reports of it. The review notes the “most empirical support” for (mainstream) applied behavior analysis. How-ever, that requires “30–40 h of treatment per week for several years,” thus the impetus for

How-ever, that requires “30–40 h of treatment per week for several years,” thus the impetus for alternative treatments. There are studies using oral or social feedback but with little promise (unless one considers rein-forcement “feedback”). For example, Bedford et al. (2013) found a failure to learn from social feedback in children with autism who had been held back in their vocabulary development around age 2 years. However, they did not mention the use of video or other possibilities.

around age 2 years. However, they did not mention the use of video or other possibilities. Reviews of video feedback with general clini-cal populations do not help with autism. For example, there are numerous reviews of Video Interaction Guidance (e.g., Kennedy et al. 2011) around issues of interest in autism – for example, family studies including child clinical partici-pants. But neither the data nor the references seem to mention “autism.” The authors do provide overall evidence that video

nor the references seem to mention “autism.” The authors do provide overall evidence that video feedback can be used effectively to improve parenting skills and parent–child interactions. It seems likely that video feed-back, when used constructively for parenting, classroom management, etc., can benefit children and adults with autism. But there is little evidence that video feedback can benefit individuals with autism directly for skills or behavior develop-ment, unless it provides feedforward.

Video feedforward. Previous studies have dem-onstrated the effectiveness of video feedforward to improve various psychological conditions, for example, reading skills (Dowrick et al. 2006; Robson et al. 2015), sport performance (Ste-Marie et al. 2011), communication (Smith et al. 2014), and presentation skills (Murphy and Barry 2016). These are self-modeling interventions that acknowledge the procedure as “feedforward.” Most studies have focused on primary school-age children, often chil-dren

as “feedforward.” Most studies have focused on primary school-age children, often chil-dren with special needs, although some have included adults (see Dowrick 2012) and those with elite skills, such as gymnastics (Dowrick 1989) and swimming (Clark and Ste-Marie 2007). In a thesis study of four children aged from 9 to 17 years, Holly Smith produced remarkable results using video feedforward. The youth were all on the autistic spectrum, some severe, with serious phobias of dogs. At first, two

youth were all on the autistic spectrum, some severe, with serious phobias of dogs. At first, two were treated with peer models, two with VSM: the first showed no effects; the second, moderate effects. Then all videos were redone to feature feedforward – with immediate and dramatic results. Phobic reactions disappeared, replaced by enjoyment, in some cases patting the test dogs and one request to own a similar dog (Smith 2018). In all conditions, the speed of behavior change is most notable. In

own a similar dog (Smith 2018). In all conditions, the speed of behavior change is most notable. In particular, the children with autism in the Smith et al. study, mentioned above, transformed their ability to use picture communi-cation in a matter of days or short weeks. Such communication had previously proved so chal-lenging, they had not gained skills in years of instruction. Dowrick et al. (2006) implemented video feedforward on children with special needs who have difficulties in reading.

implemented video feedforward on children with special needs who have difficulties in reading. Robson et al. (2015) support Dowrick et al.’s (2006) findings by show-ing the benefit of video feedforward on reading fluency. The participants were 11 children who watched the edited video of themselves reading fluently. The findings showed that feedforward helped them to read more fluently, as measured by accuracy, comprehension, and speed. Ste-Marie and colleagues (2011) expanded the use of video

by accuracy, comprehension, and speed. Ste-Marie and colleagues (2011) expanded the use of video feedforward to help children improving their performances in sport, including trampoline skills. Smith et al. (2014) used video feedforward to enhance the picture-based communication skills of two children with autism and one adult with Down syndrome in their social environments. Fur-thermore, Murphy and Barry (2016) showed video feedforward contributions in improving presenta-tion skills of

Murphy and Barry (2016) showed video feedforward contributions in improving presenta-tion skills of university students. Those findings indicate that video feedforward has been used in various settings for target behaviors which show promise for further research and applications to expand the use in other psychological aspects and settings.

Future Directions Recognition of feedforward will improve as more self-modeling studies acknowledge the “feedforward”/“positive self-review” distinction. Clearly, interventions with feedforward show remarkably superior speed and efficacy of behav-ior change. The literature will be notably advanced by the proper recognition of feedforward as distinct from the carefree or care-less reference to feedback as a catch-all category for all video or other recorded replay.

Video Games and Violence Laurie A. Sperry Department of Psychiatry, School of Medicine, Yale University, New Haven, CT, USA  Definition Adolescents with autism spectrum disorder (ASD) spend a considerable amount of their lei-sure time playing video games to the exclusion of other pursuits. Often the content of these games is violent. It is unclear what impact the consumption of violent video games (VVG) has on the behavior of adolescents with ASD or whether this results in increased risk for

(VVG) has on the behavior of adolescents with ASD or whether this results in increased risk for contact with the juvenile justice system (JJS).

Historical Background Following the mass shooting of children and school personnel in Newtown, Connecticut, there is an emerging body of research specifically focused on video game use in children and ado-lescents with ASD. The shooter, Adam Lanza, was a young man with ASD who was known to play violent video games for several hours a day, including a first-person-shooter game entitled School Shooter (Sedensky 2013). The object of School Shooter (Checkerboard Studios 2011) is to murder as many

(Sedensky 2013). The object of School Shooter (Checkerboard Studios 2011) is to murder as many schoolchildren and staff members as possible, using weapons similar to those uti-lized in the Columbine massacre. After complet-ing the shootings, the gamer is prompted to commit suicide before being apprehended by law enforcement. Adam Lanza walked into Sandy Hook Elementary School, shot and killed 20 schoolchildren and six staff members, and then committed suicide prior to being apprehended by

20 schoolchildren and six staff members, and then committed suicide prior to being apprehended by police. Norwegian mass shooter Anders Breivik received a diagnosis of ASD after murdering 77 people. Breivik wrote in his 1500 page mani-festo that he utilized the video game Call of Duty: Modern Warfare 2 and World of Warcraft as train-ing videos for the attack. He photographed him-self dressed in garb emulating characters from the games including a military uniform, a hazardous material suit, and

emulating characters from the games including a military uniform, a hazardous material suit, and a special operations soldier. At his trial, he made a statement related to how his-tory would view him which was very similar in nature the script from the game Call of Duty. He reported playing both games for up to 15 h a day in preparation for the massacre (Breivik 2009). This raises the question, are violent video games serving as video model for mass shootings perpe-trated by people with ASD?

are violent video games serving as video model for mass shootings perpe-trated by people with ASD? Adolescents with autism spectrum disorders (ASD) spend approximately 4.4 h per day watching television and playing video games. This amount is greater than the time spent pursu-ing any other leisure activities (Mazurek and Wenstrup 2013). Parents reported considerable difficulty related to the behaviors displayed by their children with ASD when efforts were made to monitor and/or restrict access to

displayed by their children with ASD when efforts were made to monitor and/or restrict access to media and video games. Longitudinal research by Willoughby et al. (2012) on the effects of VVG consumption on behavior in neurotypical adolescents suggests that continual violent video game play predicts the slope of aggression at a level reaching statistical significance. Moreover, sustained playing of violent video games reliably predicted higher levels of aggression over time. Their findings

of violent video games reliably predicted higher levels of aggression over time. Their findings sug-gest that continual nonviolent video (NVG) game play does not significantly predict scores of aggression.

Current Knowledge Vulnerability to the Impact of Violent Video Games Specific cognitive, social, and sensory functions are involved in the interaction with video game play (Durkin 2010). Each of these areas is impacted when a person has a diagnosis of ASD (DSM-5, APA 2013). Markey and Markey (2010) examined the personality traits that may make an individual more vulnerable to the effects of vio-lent video games (VVGs). These researchers pos-ited that preexisting dispositions increase the

vio-lent video games (VVGs). These researchers pos-ited that preexisting dispositions increase the susceptibility of certain individuals to the impact of VVGs. Using the five-factor model of person-ality traits (McCrae and Costa 1999), they devel-oped a spherical model to determine how the confluence of specific traits may render a person most vulnerable to the deleterious effects of VVGs. The model suggested that three orthogonal traits were moderating variables of VVGs. These traits included

suggested that three orthogonal traits were moderating variables of VVGs. These traits included high neuroticism, low levels of agreeableness, and low conscientiousness. It is possible that the corollary to this model in the population of people with ASD is ToM deficits, belief persistence, difficulties with syllogistic rea-soning, and difficulties with emotional regulation. As a result, they may be particularly susceptible to allegory or images of violent hyperbole, and it is possible that they

particularly susceptible to allegory or images of violent hyperbole, and it is possible that they may take the visual information presented in a VVG at face value and emulate it. Comorbid psychiatric disorders could poten-tially serve as a moderating variable exacerbating the person’s susceptibility to VVGs.

Violent Video Games and Aberrant Behavior Anderson et al. (2004) completed a meta-analysis on the robust body of literature that demonstrates a relationship between consumption of virtual violence and actual aggression. The mechanism that accounts for this relationship is the subject of intense interest. A possible explanation for the relationship between VVG and increases in mea-sures of aggression is that virtual violence is abstract and therefore pleasurable, allowing for a level of moral

is that virtual violence is abstract and therefore pleasurable, allowing for a level of moral disengagement with violent actions. Many gamers describe a lack of remorse over engaging in virtual violence and derive great pleasure from playing VVGs (Ladas 2002). As computer graphics become more sophisti-cated, the characters, both protagonists and antag-onists, become more identifiable as social entities. These enhanced graphics allow for a level of immersion that has been linked to heightened

entities. These enhanced graphics allow for a level of immersion that has been linked to heightened enjoyment in game play (Skalski et al. 2006). Some VVGs come with a “blood on” feature, which allows the gamer to control whether they see the results of their carnage. Research has dem-onstrated that the “blood on” condition results in higher scores on measures of aggression than the “blood off” condition (Farrar et al. 2006). Hartmann and Vorderer (2010) have hypothesized that enjoyment of

condition (Farrar et al. 2006). Hartmann and Vorderer (2010) have hypothesized that enjoyment of virtual violence may be contin-gent upon maximizing rewarding aspects of the game (feelings of power and/or success) while minimizing negative costs (guilt). This cost-benefit equation is likely impacted by both the amount of play and the role violence itself plays within the game. High-use gamers may become inured to images of violence and the resultant suffering displayed within the game (Carnagey

become inured to images of violence and the resultant suffering displayed within the game (Carnagey et al. 2007). Gamers who are able to justify their behaviors because the antagonist is engaging in morally reprehensible acts may feel absolved of the guilt and distress associated with acts of vir-tual violence (Opotow 1990). Another possible antecedent to this increase in aggressive behaviors may be the denial of humanness to the victim. Greitemeyer and McLatchie (2011) examined the role

may be the denial of humanness to the victim. Greitemeyer and McLatchie (2011) examined the role ascribing or denying humanness to the victim in video games played in measures of violence and aggression. Visual hyperbole is often used to portray the antagonists in VVGs. These larger-than-life characters are imbued with nonhuman characteristics which may lead to the gamer engaging in cognitive distortions, allowing themselves to justify the intensity of their game-playing violence to vanquish

allowing themselves to justify the intensity of their game-playing violence to vanquish the enemy (Smith et al. 2003). Greitemeyer and McLatchie (2011) hypothesized that this dehumanization and justification of violence could transfer from the screen to real life through the type of moral disengagement that assuages guilt and provides a pathway for aggression toward victims (Bandura et al. 1996).

These concepts of desensitization, feelings of power, and denying humanness to victims may have particular relevance to gamers with ASD. Many adolescents with ASD have been the vic-tims of bullying and marginalization (Little 2002). They spend the majority of their leisure time playing video games that may provide their sole source of feelings of empowerment. In the game One Life (Chalk 2015), an FPS game, players only have one life and losing it means they are locked out of the game forever.

FPS game, players only have one life and losing it means they are locked out of the game forever. This adds an element of reality to game play heretofore unseen. Players also have the ability to extend mercy or humiliate their victims prior to vanquishing them. The game boasts that no other game will provide players with the feelings of power and control over others. Players are rewarded for ignoring the cries of pain, rage, and appeals for mercy from their victims. In an ultimate act of

ignoring the cries of pain, rage, and appeals for mercy from their victims. In an ultimate act of degradation, players can urinate on their victims. From a behavior analytic per-spective, the immediate and continuous schedules of reinforcement for aggression followed by inter-mittent schedules of reinforcement as the gamer advances through levels have the potential to build extremely durable aggressive mind-sets for the gamer with ASD. People with ASD often have a concrete and literal sense of

mind-sets for the gamer with ASD. People with ASD often have a concrete and literal sense of right and wrong and as such may find it easier to morally disengage than the neurotypical gamer. The ability to morally disen-gage requires the gamer to deny humanness to the victim, an act that is facilitated by viewing the victim’s acts as repugnant, thus justifying the vanquishing of the victim. This abates feelings of guilt and distress associated with virtual vio-lence (Hartmann and Vorderer 2010).

feelings of guilt and distress associated with virtual vio-lence (Hartmann and Vorderer 2010). Greitemeyer and McLatchie (2011) com-pleted a series of two experiments designed to determine if type of video game (violent, neutral, pro-social) impacted measures of aggressive behavior. Playing VVG increased dehumaniza-tion toward others and was linked to increased measures of aggressive behavior. Specifically, the researchers found that players of VVG ascribed fewer human-centric emotions to

Specifically, the researchers found that players of VVG ascribed fewer human-centric emotions to others, reducing the opposing gamers, in a sense, to the level of animals, machines, or objects. This concept has interesting implica-tions for gamers with ASD, many of whom expe-rience difficulty in facial emotional recognition as the result of the social difficulties inherent in their diagnosis (O’Connor et al. 2005).

The role of VVG as a factor in conferring increased risk of aberrant behavior in adolescents with ASD is unclear. The answer to this question may serve to explain the distress and problem behavior exhibited by people with ASD when efforts are made to place parameters on their gam-ing (Mazurek and Wenstrup 2013). Engelhardt et al. (in press) recently completed a study in which adults with ASD as well as adults who were neurotypical were randomized to different video game playing conditions: VVG

as adults who were neurotypical were randomized to different video game playing conditions: VVG versus NVG. Measures of aggressive thought accessibil-ity, aggressive affect, and aggressive behavior were taken following the consumption of VVGs. Com-pared with their neurotypical peers, adults with ASD were not differentially impacted by viewing VVG (Engelhardt et al. in press). These findings may have limited applicability to the current study as the adults were exposed to only three brief video

limited applicability to the current study as the adults were exposed to only three brief video game sessions (15, 10, and 10 min) for a total of 35 min of game play, and this figure is considerably less than the average 2.4 h of daily game play reported by parents of teenagers with ASD (Mazurek and Wenstrup 2013). Therefore, there may be something of a dose-response relationship in which long-term consumption of VVGs has a different effect on gamers with ASD than acute, short-term consumption.

consumption of VVGs has a different effect on gamers with ASD than acute, short-term consumption. A study by Krcmar and Lachlan (2009) exam-ined the association between length of VVG play and aggression and found a positive relationship between habitual game play and physical aggres-sion. A study which examined the impact of VVG on measures of aggression found that there were significant increases from pre-exposure baselines after participants played first-person-shooter games (Barlett et al.

from pre-exposure baselines after participants played first-person-shooter games (Barlett et al. 2007). Thus, long-term expo-sure to violent images may lead to an increase in aggression as the result of regularly primed aggressive mind-sets.

Internet Addiction There is a growing body of literature on the Inter-net gaming disorder (IGD), which has been iden-tified in the emerging measures and models section of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as a disorder that merits additional clinical research prior to being included in the main text (American Psychiatric Association 2013). People with IGD experience clinically significant levels of distress when limits are put on their gaming, but they also

clinically significant levels of distress when limits are put on their gaming, but they also experience this distress when playing compulsively, which compromises other activities of daily life includ-ing work and school. In one of the largest studies to date (N ¼ 7069), Grüsser et al. (2006) found that nearly 12% of study participants met diagnostic criteria for addiction (including craving, feelings of relief when playing, and increasing game play) relative to their gaming behaviors. Based on

of relief when playing, and increasing game play) relative to their gaming behaviors. Based on their responses to an online questionnaire, participants fell into two groups: pathological gamers who played an average of 4.70 h per day and non-pathological gamers who played an average of 2.49 h per day. There were statis-tically significant between-group differences, with the pathological gamers reporting greater anticipated relief of withdrawal when playing. They also demonstrated statistically

greater anticipated relief of withdrawal when playing. They also demonstrated statistically significant higher levels of craving than non-pathological gamers. Addiction may be the result of the neu-rological response to the positive reinforcement inherent in the games and the success the indi-vidual experiences while playing. During their time away from gaming, they experience feelings associated with drug withdrawal.

Circumscribed interests may be part of the constellation of characteristics that can render people with ASD more vulnerable to the impact of VVG. Klin et al. (2007) first posited the idea that video game addiction may be an example of a circumscribed interest. In a study by Romano et al. (2014), the relationship between scores on the autism spectrum quotient questionnaire (AQ; Baron-Cohen et al. 2001), scores on the Spielberger trait anxiety inventory (STAI-T; Spielberger 1983), scores on the

2001), scores on the Spielberger trait anxiety inventory (STAI-T; Spielberger 1983), scores on the Beck depression index (BDI; Beck et al. 1961), and scores on the Internet addiction test (IAT; Young 1998) were examined. The IAT measures the extent to which activities of daily living are compromised by time spent on the Internet. Statistically, significant rela-tionships were found between scores on the AQ, STAI-T, and degree of Internet addiction. People with higher AQ scores, meaning they had

on the AQ, STAI-T, and degree of Internet addiction. People with higher AQ scores, meaning they had more autistic traits, tended to score high on the IATwith anxiety serving as a moderating variable. Interest-ingly, participants with high AQ scores and low STAI-T scores reported the highest levels of Inter-net addiction. As the IAT does not specifically measure how time is spent on the Internet, it is difficult to determine if the participants with high AQ scores and high anxiety were pursuing

it is difficult to determine if the participants with high AQ scores and high anxiety were pursuing special interests, engaging in social media, or playing VVGs. In other words, some of the aforemen-tioned activities may have a soothing effect while others may serve to escalate anxiety. Mazurek et al. (2012) completed a study based on data from the National Longitudinal Transition Study-2 (NLTS-2). The vast majority of adoles-cents with ASD (64.2%) spent the bulk of their free time consuming

The vast majority of adoles-cents with ASD (64.2%) spent the bulk of their free time consuming television and video games. When video games and television viewing were separated, 41.4% spent the greater part of their free time consuming video games. When com-pared to adolescents with other disabilities, teens with ASD spent more time playing video games, and these differences reached the level of statisti-cal significance. The amount of consumption cre-ated considerable interference with their

statisti-cal significance. The amount of consumption cre-ated considerable interference with their activities of daily living and functioning. Only 28% of neurotypical teens qualify as high consumers of video games compared to 60.3% of adolescents with ASD. The greatest predictors of high use for teens with ASD included a higher IQ and access to technology in their homes.

Game Genres In 2014, half of the ten top-selling video games were classified as VVG (Kain 2015). These include first-person-shooter games (FPSG) and role-playing games (RPG). First-person-shooter games (FPSG) allow gamers to immerse them-selves into a three-dimensional world with the console screen serving as their means of experiencing the action from the point of view of the shooter (Schneider 2004). Contrary to popular belief, FPSGs are not always played in isolation. A study by Jansz and

2004). Contrary to popular belief, FPSGs are not always played in isolation. A study by Jansz and Tanis (2007) found that the majority of gamers who played FPSGs (80%) joined a clan, which allowed them to collaborate and compete with gamers at simi-lar skill levels. This suggests there is a social motive to the play of neurotypical gamers, though it is unclear if people with ASD play FPSG in the same way or for the same purposes. Barlett et al. (2007) found significant increases in levels of

same way or for the same purposes. Barlett et al. (2007) found significant increases in levels of aggression in participants after playing FPSGs for a mere 15 min. They propose that priming for aggression occurs when a person is exposed to VVG which triggers aggressive thoughts and ultimately aggressive actions. This high level of primed aggression is exacerbated by the amount of blood and gore that accompany an aggressive action within the game. Role-playing games (RPGs) differ from FPSGs in

that accompany an aggressive action within the game. Role-playing games (RPGs) differ from FPSGs in that they allow the person with ASD to immerse themselves in the game by taking on an avatar within a fantasy world, setting out on quests, and exploring against the backdrop of a story line or dialogue. Gamers who engage with RPGs tend to play longer (23–25 h a week versus 16 h per week for FPS gamers) (Ng and Wiemer-Hastings 2005; Jansz and Tanis 2007) and develop substantial attachments to

gamers) (Ng and Wiemer-Hastings 2005; Jansz and Tanis 2007) and develop substantial attachments to their character (Lewis et al. 2008). These character attachments are formed as the gamer’s actions shape the devel-opment of the story line, and the gamer becomes more immersed and integrated with his/her avatar. In their study on character attachment, Lewis et al. (2008) found that gamers with stronger character attachments were motivated by fantasy seeking, social interaction, and diversion.

character attachments were motivated by fantasy seeking, social interaction, and diversion. This raises a question regarding the degree to which a gamer with ASD would form attachments with a charac-ter in an RPG (Kowert and Oldmeadow 2014). Does a competent avatar allow a person with ASD to feel more competent and less socially anxious? Does the avatar become the surrogate friend in the absence of real-world friendships, thus limiting real-world social experiences and exacerbating social

of real-world friendships, thus limiting real-world social experiences and exacerbating social impairments?

Mazurek and Engelhardt (2013) examined the relationship between video game play and scores on measures of problem behavior in a sample of 169 boys with a diagnosis of ASD. Video games were identified as fitting into the category of RPG or FPSG. In this study, the amount of video game consumption did not demonstrate an association with maladaptive behaviors. However, there was a statistically significant positive relationship between type of game (RPGs) and scores on measures of oppositional

significant positive relationship between type of game (RPGs) and scores on measures of oppositional behavior. There was also a positive relationship, though not reaching the level of statistical signif-icance, between FPSGs and oppositional behaviors. Additionally, there was a statistically significant positive relationship between FPSGs and addictive gaming behaviors. Chung et al. (2015) examined the effects of active video game play (AVG) on the social behaviors of children with ASD. In this

the effects of active video game play (AVG) on the social behaviors of children with ASD. In this single-subject design study, children with ASD played with their siblings with measures taken on joint positive affect, reciprocal conversation, and aggression. Primary analysis suggested that AVGs have an inconsistent effect on the sociali-zation of children with ASD and their siblings. Of particular interest, however, was a finding in the supplementary analysis of the augmented reality (AR)

interest, however, was a finding in the supplementary analysis of the augmented reality (AR) condition. The AR was originally conceived to provide a bridge between sedentary and active game play and to introduce the more cooperative style of play with the sibling. Rather than using an avatar, the AR condition used a silhouette or photo-realistic image of the gamer. The AR con-dition was statistically significantly more pre-ferred by the majority of participants with ASD, and they reported a more

significantly more pre-ferred by the majority of participants with ASD, and they reported a more positive experience with the AR condition.

Violent Video Games as Video Models Social learning theory (Bandura and Walters 1977; Bandura 1997) has demonstrated the impact of modeling on children’s acquisition of social, emotional, behavioral, and functional skills. According to Bandura’s social learning theory, children pay particular attention to models who share their salient demographic characteristics and models perceived to be competent. These models can continue to influence the child beyond the context of the original observation

These models can continue to influence the child beyond the context of the original observation and do not require reinforcement for behavioral modeling to occur. Social learning theory may explain why the AR conditions in the Chung et al. (2015) study were preferable to the children with ASD. It may also begin to explain the underlying mechanism for VVGs as potential video models of aberrant behavior in adolescents with ASD. Ferguson and Kilburn (2010) have raised the issue of selection to

behavior in adolescents with ASD. Ferguson and Kilburn (2010) have raised the issue of selection to explain the relationship between VVG play and aggression. It is possible that peo-ple who are naturally more aggressive play more violent video games. Przybylski et al. (2009) found that while the level of violence in a video game did not enhance enjoyment, those with higher scores on measures of trait aggression strongly preferred VVGs over NVG, and this was strongly predictive of their future

trait aggression strongly preferred VVGs over NVG, and this was strongly predictive of their future choices of VVGs. Alternately, violent video games may result in increases in aggressive behavior. There is ample research that supports the finding that observation of violence in the home, community, and school is detrimental to children and increases their risk of engaging in violent behavior (Cummings et al. 2010; Henrich and Shahar 2013). Bushman and Huesmann (2013) support the position that

et al. 2010; Henrich and Shahar 2013). Bushman and Huesmann (2013) support the position that there is an interaction between aggression-prone personalities and social cogni-tive learning, including observational learning. Randomized, controlled studies have demon-strated that decreasing access to media violence and teaching children rules against mimicking violence they see have both shown a decrease in aggression (Moller et al. 2012). Video modeling is an evidence-based strategy utilized to

in aggression (Moller et al. 2012). Video modeling is an evidence-based strategy utilized to teach pro-social behaviors to people with ASD that capitalizes on the strong visual learning skills of this population. Point-of -view modeling enables the person with ASD to see what the behavior looks like from the standpoint of the person engaging in the target behavior. These pro-social behaviors can include ending a conversation appropriately, asking for help, or entering into an ongoing

can include ending a conversation appropriately, asking for help, or entering into an ongoing conversation (Bellini and Akullian 2007). Video modeling allows for the repeated and consistent use of models that do not vary from time to time as they would likely do with a live model and has been successful in teaching and maintaining imitation skills in chil-dren with ASD (Cardon and Wilcox 2011). Video modeling is an effective tool for teaching pro-social behaviors, though it is not clear to what

modeling is an effective tool for teaching pro-social behaviors, though it is not clear to what extent VVGs are impacting aberrant behavior by providing antisocial models for adolescents with ASD. Strong visual skills, circumscribed inter-ests, difficulties in syllogistic reasoning, deficits in ToM, and problematic/addictive gaming behav-iors may serve as a confluence of vulnerabilities rendering the adolescent with ASD vulnerable to emulating the behaviors viewed during hours of VVG playing.

Future Directions Future research should consider the factors that may be contributing to mass shootings perpetrated by young men with ASD and comorbid psychiat-ric disorders who spend significant amounts of time playing VVGs. Does their propensity toward visual learning make them more vulnerable to violent images? Are deficits in perspective taking that make it difficult for them to consider how their behavior impacts others, being exacerbated by the dehumanization of victims within video games?

behavior impacts others, being exacerbated by the dehumanization of victims within video games? Is this violent modeling generalizing to real-life behaviors? Are some people with ASD more impacted by violent images than others and if so, what variables moderate that impact? Are the feelings of empowerment provided by video games serving to galvanize aberrant behavior? It is incumbent upon the ASD community, including people with ASD, advocates, families, and professionals, to demonstrate an

ASD community, including people with ASD, advocates, families, and professionals, to demonstrate an understand-ing of the impact of violence consumption on people with ASD through the development of reasonable game play guidelines. Components of VVGs that may make them appealing to the player (pace, level of competitiveness, graphics, fre-quency of rewards) could be identified, and alter-native games could be substituted that would still allow the person with ASD access to an equivalent gaming

could be substituted that would still allow the person with ASD access to an equivalent gaming experience without subjecting them to graphic violence. This may serve as a mechanism for families to provide acceptable gaming alterna-tives thus avoiding the resultant problem behav-iors that come with placing restrictions on their video game play. While these questions are being investigated, we must consider the amount and type of violence adolescents with ASD are routinely consuming and work

must consider the amount and type of violence adolescents with ASD are routinely consuming and work toward developing nonviolent alterna-tive interests both within and outside of the digital world.

See Also ▶Aberrant Behavior Checklist ▶Internet Safety ▶Video Modeling/Video Self-Modeling ▶Violence and ASD  Video Games, Use of Frederick Shic School of Medicine, Yale Child Study Center, Yale University, School of Medicine, New Haven, CT, USA  Definition Video games are electronic media with three key attributes: they display content visually, they are interactive, and they are typically used for enter-tainment or have entertainment-like qualities. Video games encompass a wide array of

used for enter-tainment or have entertainment-like qualities. Video games encompass a wide array of formats, applications, and designs, ranging from simple hand-held gaming devices depicting black and white rasterized characters, to fully immersive virtual reality simulators. In general, video games are separate from elec-tronic screen media, because electronic screen media do not necessarily require an interactive component. Video games are separate from computer-assisted instruction and

require an interactive component. Video games are separate from computer-assisted instruction and computer-based intervention, as video games are typically associated with entertainment, and computer-assisted instruction and computer-based interven-tion involve a therapeutic or didactic element or intention. Similarly, a distinction can be drawn between software, in general, and video games (which can be a specific type of software), as the goal in most software is typically to facilitate an

can be a specific type of software), as the goal in most software is typically to facilitate an external goal in the most efficient way possible (e.g., summing numbers, looking up information on the internet, or reading an Encyclopedia of Autism entry); the goal for video games typically lies within the game itself or is defined by the game (e.g., to “win” the game, to solve a puzzle, or to “beat” another player). It is important to note that the line between video games and other forms of

another player). It is important to note that the line between video games and other forms of interactive elec-tronic media is somewhat indistinct. It could be argued that some computer-based interventions are, in fact, video games, since they rely on games (in particular, other video games) as a basis for design (e.g., the Memory game, played with emotional faces, for individuals with autism). Nevertheless, the term “video game” is sometimes avoided by researchers who wish to highlight the

Nevertheless, the term “video game” is sometimes avoided by researchers who wish to highlight the advantages and potential of this media format while avoiding the perceived negative connota-tions associated with, for example, video game violence or obsessive video game play that serves no positive remedial goal.

Historical Background History of Video Games One of the first reports of video games was filed in a patent, “Cathode-ray tube amusement device,” in 1947 by Goldsmith and Ray (1948; Mitra 2010). This patent described a game system in which a cathode-ray tube was used as the face of the console, displaying a single moving point, representing a missile fired toward drawn figures overlaid upon the tube. Over the next two decades, other video games slowly emerged, driven by advancements in computer

Over the next two decades, other video games slowly emerged, driven by advancements in computer technologies and increasing sophistication with computer programming. Notable games during this time included “OXO,” a tic-tac-toe program written as part of a University of Cambridge Ph.D. dis-sertation, by Alexander Douglas in 1952; “Tennis for Two,” a tennis game played on an oscilloscope screen at Brookhaven Nation Labs, by William Higinbotham in 1958; and “Spacewar!,” a two-player vector-based

Brookhaven Nation Labs, by William Higinbotham in 1958; and “Spacewar!,” a two-player vector-based space combat game designed to showcase the Digital Equipment Corporation’s recently developed computer, the PDP-1, by MIT students Steve Russell and others in 1962 (Burnham 2001; Donovan 2010). Through the 1960s, video games were primar-ily viewed as sophisticated but impractical nov-elties, due to their size and expense. However, as the cost and size of electronics and microproces-sors began to

their size and expense. However, as the cost and size of electronics and microproces-sors began to rapidly decrease, video games became more viable as a form of entertainment. In the 1970s, beginning with the successes of coin-operated arcade systems such as Pong, video games came into vogue and quickly became significant segments of the entertain-ment market (Donovan 2010). The late 1970s saw commercial successes by companies such as Atari, and by the early 1980s video games had moved into the

successes by companies such as Atari, and by the early 1980s video games had moved into the home in the form of consoles and personal computers, ushering in the modern era where video games have never diminished from public consciousness (Donovan 2010; Kent 2001). Video games have continued to innovate and redefine themselves (Donovan 2010). In the early 2000s, internet games became popular, allowing players to participate in games with tens or thou-sands of other players at the same time.

allowing players to participate in games with tens or thou-sands of other players at the same time. Simulta-neously, mobile devices like cell phones began to allow gaming on devices that were cheap and portable and therefore ubiquitous. Today, this interconnectivity and ubiquity of access define some of the most modern aspects, and modern challenges, of video game technology.

Types of Video Games The taxonomy of video games is a complex sub-ject (e.g., see Apperley 2006; Wolf 2002). How-ever, one useful classification scheme involves the discussion of video game “genres.” A review by Yuan et al. (2010) identifies the following (non-exhaustive and non-mutually exclusive) cat-egories of games: (1) first-person shooter, (2) strat-egy games, (3) sports games, (4) role-playing games, (5) puzzle games, (6) racing games, (7) dance/rhythm games, and (8) adventure games.

games, (5) puzzle games, (6) racing games, (7) dance/rhythm games, and (8) adventure games. Another distinction in video games is between “serious video games” versus “non-serious video games.” Serious video games represent games intended to fulfill a role other than (or in addition to) pure entertainment, with the typical assump-tion that they will foster some specific skill acqui-sition or broader learning (Rego et al. 2010; Susi et al. 2007). Others, however, argue that such a distinction is

learning (Rego et al. 2010; Susi et al. 2007). Others, however, argue that such a distinction is artificial, and that even games not originally intended to be “serious” can be used for serious intentions, such as education

Preface to Second Edition Eight years have now passed since the first edition of this Encyclopedia. During that time the field has continued to grow – almost exponentially in some areas! In doing this second edition of the Encyclopedia, we are mindful of the growth as well as some of the advantages for updating entries and including new ones in this much used reference work. It has been gratifying to see this resource being heavily used with around 400,000 downloads since it first appeared!

In this second edition we have added nearly 400 new entries and updates on over 450 previous entries reflecting activity in the field since the first edition. As with the first edition we have attempted to be comprehensive in scope with entries on a range of topics including not only research issues but biographies of important contributors to the field, legal and social policy issues, educational, behavioral, and medical interventions, treatments, and advances in basic sciences of behavior,

behavioral, and medical interventions, treatments, and advances in basic sciences of behavior, communication, neurobiology, genetics, epidemiology, and so forth. For this edition, we have also included a new set of entries on countries giving brief overviews of the history of autism work and the current state of the field in both developed and developing countries. This latter group of entries also reflects the growing interest in autism around the world specifically in developing countries where

reflects the growing interest in autism around the world specifically in developing countries where infrastructure for both service, teaching, and research has become increasingly important. With the addition of our new entries, we have reached nearly 1800 entries in total.

As with the first edition we hope that this work provides an invaluable resource for parents, students, educators, researchers, and professionals alike. Even though these volumes appear in hard copy, in this new second edition we continually update entries and add new ones as these are needed. For this addition, I particularly thank our supporters at Springer – Judy Jones, Tina Shelton, and Sindhu Ramachandran, at Yale my helpful assistants Lori Klein and Monica Mleczek, and at the Autism Center

Ramachandran, at Yale my helpful assistants Lori Klein and Monica Mleczek, and at the Autism Center at Southern Connecticut State University my assistant Eileen Farmer. I also particularly thank my Associate Editor Dr. Michael Powers who has assumed an important leadership role in the production of this edition. All of us hope you find this unique resource a valuable and helpful one. We are delighted to welcome you to this second edition.

New Haven, CT, USA Fred R. Volkmar September 1, 2020  Preface to First Edition Why an encyclopedia of autism? There are several answers to this question. They include the need to provide a comprehensive and current guide to the diverse knowledge now available. There has been a significant upsurge in research in autism during the past two decades. Several hundred papers were published in 1991 compared to more than 2,000 articles during 2011. The quantity of research (not even counting

1991 compared to more than 2,000 articles during 2011. The quantity of research (not even counting non-peer-reviewed publications) has increased so dramatically that it is difficult, if not impossible, for researchers and clinicians to keep up. Access to a reference work that provides an introduction to relevant information is clearly needed.

Although several excellent handbooks and textbooks have been published in recent years, these are, almost intrinsically, fated to become increasingly out of date more and more quickly. Fortunately, many of the same technological advances that have been adapted for use with individuals with autism have uses for those of us who support them. The ability to produce both a print reference work as well as an online version with additional content was a major attraction for us in undertaking this

well as an online version with additional content was a major attraction for us in undertaking this project. It also can be updated easily and will have additional content. The electronic format also provides for an extensive cross-referencing system, which is designed to facilitate rapid searching and information retrieval.

With contributions on a range of topics from leaders in the field, this reference work breaks new ground as a resource. The Encyclopedia contains several thousand entries relevant to autism and related conditions, including new research findings; entries on development and behavior; assessment methods and instruments; treatments and educational interventions; biographies of leaders in the field; and information relevant to epidemiology, social policy, and treatment planning.

Both I and the associate editors of this work hope that you will benefit from using the encyclopedia and welcome your feedback. By the time the print publication of this work appears, the online edition will already have had entries added reflecting new knowledge in various areas. We hope that this resource enhances the work of clinicians and researchers alike.

New Haven, CT, USA Fred R. Volkmar M.D. September 2012  About the Editor Fred R. Volkmar is the Irving B. Harris Professor of Child Psychiatry, Pediatrics, and Psychology at the Yale Child Study Center, Yale University School of Medicine, and the Dorothy Goodwin Family Chair of Special Education at Southern Connecticut State University. An international authority on Asperger’s disorder and autism, Dr. Volkmar was the primary author of the DSM-IV autism and pervasive developmental disorders

Dr. Volkmar was the primary author of the DSM-IV autism and pervasive developmental disorders section. He has authored several hundred scientific papers and has coedited numerous books, including Asperger Syndrome, Healthcare for Children on the Autism Spectrum: A Guide to Medical, Nutritional, and Behavioral Issues, and the recently released third edition of the Handbook of Autism and Pervasive Developmental Disorders. He serves as associate editor of the Journal of Autism, the Journal of Child

Disorders. He serves as associate editor of the Journal of Autism, the Journal of Child Psychology and Psychiatry, and the American Journal of Psychiatry. He also serves as co-chairperson of the autism/MR committee of the American Academy of Child and Adolescent Psychiatry. Since 2007 he has served editor of the Journal of Autism and more recently of the Encyclopedia of Autism.

Jan Łukasik Department of Paediatrics, The Medical University of Warsaw, Warsaw, Poland

Joyce Lum UNC TEACCH Autism Program-Charlotte, Charlotte, NC, USA The evaluation of the child should include inquiries about the child’s behavior in different settings and with different caregivers to note any differences. Formal observations of the child and parent interactions are also important. Procedures derived from developmental research, such as the Strange Situation Procedure (Ainsworth et al. 1978) or the Crowell procedure (Zeanah et al. 2000), are relatively short observations of

et al. 1978) or the Crowell procedure (Zeanah et al. 2000), are relatively short observations of child and parent interaction which help the clinician systematically to observe the interaction between the child and caregiver (Zeanah et al. 2011). During the assessment, there are several other diagnoses to consider since attachment disorders may share features of some other disorders (see Table 1 for details). For example, emotionally withdrawn/inhibited RAD may be confused with autistic

1 for details). For example, emotionally withdrawn/inhibited RAD may be confused with autistic spectrum disorders or global developmental delay. The problems with emotional regulation and impaired social reciprocity may resemble the social difficulties of a child with an autistic spectrum disorder. On the other hand, there is little reason to expect restricted interests or repetitive behaviors in children with attachment disorders. A history of adverse caregiving as well as no selective

in children with attachment disorders. A history of adverse caregiving as well as no selective impairment in language or pretend play should point toward a diagnosis of RAD in such children. Although children with RAD are likely to have cognitive delays, their impaired social responsiveness is not a symptom of intellectual disabilities alone. Children with intellectual disabilities should have social behavior and emotional expressiveness congruent with their cognitive ages. On the other hand,

behavior and emotional expressiveness congruent with their cognitive ages. On the other hand, selective reductions in social reciprocity and emotional expressiveness are more indicative of emotionally withdrawn/inhibited RAD.

An important diagnosis to consider with indiscriminately social/disinhibited RAD is attention deficit hyperactivity disorder (ADHD). In RAD, young children have social impulsivity, but this should not be confused with the broader impulsivity and hyperactivity of children with ADHD. It is important to look in detail at how the child interacts in social situations and especially with unfamiliar adults. Children with RAD lack selectivity in directing their social and sometimes attachment behaviors.

Children with RAD lack selectivity in directing their social and sometimes attachment behaviors. Children with ADHD may share these features but also demonstrate impulsivity in nonsocial situations. Children with indiscriminately social/disinhibited RAD should show more profound misreading of social cues and situations and engage in more social and physical boundary violations.

**Table 1 Differential diagnosis of attachment disorders**  | Attachment disorder | Differential diagnosis | Similarities | Differences | |:--------------------|:-----------------------|:-------------|:------------| | Emotionally withdrawn/inhibited type | 1. Autistic spectrum disorder | 1. Disturbances in emotional regulation | 1. Attachment disorder does not have selective impairment in pretend play, repetitive preoccupation, or a language abnormality |

| | | 2. Impaired or absent social and emotional reciprocity | 2. Attachment disorder has a history of seriously adverse caregiving |
| | | 3. May involve cognitive delays | | | Emotionally withdrawn/inhibited type | 1. Intellectual disability | 1. Cognitive delays | 1. Attachment disorder does not have social/emotional behaviors consistent with developmental age |
| | | | 2. Attachment disorder has evidence of deviance in social responsiveness and regulations of emotion |

| Indiscriminately social/disinhibited type | 1. Attention deficit hyperactivity disorder | Social impulsivity and attention seeking behavior | 1. Attachment disorder in males shows a lack of selectivity in relationships with caregivers and peers |

### Treatment  There is only one intentional treatment study of attachment disorders that includes pre- and post-assessments and uses random assignment (Smyke et al. in preparation). The BEIP demonstrated substantial treatment effects on reduction of signs of emotionally withdrawn/inhibited RAD and more modest treatment effects of reduction in signs of indiscriminately social/disinhibited RAD for children placed in foster care compared to those who experienced continued institutional care

for children placed in foster care compared to those who experienced continued institutional care (Smyke et al.). This study bolsters confidence in other less rigorously designed studies that all suggest that signs of emotionally withdrawn/inhibited RAD disappear rapidly when children are placed in reasonably normative caregiving environments. Similarly, the results in BEIP are compatible with studies of internationally adopted children suggesting that signs of indiscriminately

with studies of internationally adopted children suggesting that signs of indiscriminately social/disinhibited RAD are less responsive to more normative caregiving environments, and that a minority of children have persistent signs of the disorder over years (Smyke et al.). Future research needs to better determine recommendations for adoptive parents whose young children exhibit signs of RAD and how best to deal not only with the behavioral manifestation but also with the social cognitive

and how best to deal not only with the behavioral manifestation but also with the social cognitive abnormalities that presumably underlie the disorder. Further, although there is a clear tendency for signs of both types of disorders to diminish over time, questions about sequelae have not been adequately answered at this point.

### See Also  *   Feral Children *   Posttraumatic Stress Disorder *   Reactive Attachment Disorder *   Romanian Adoptive Children    The ability to orient, sustain, and shift attention on relevant stimuli, using internal and external cues, is a critical skill for learning about the world. Prioritizing stimuli in order to process pertinent, and exclude peripheral, information facilitates selective learning, a skill necessary for many child development processes, including vocabulary

selective learning, a skill necessary for many child development processes, including vocabulary development, problem solving, and later, successful classroom learning (Frick and Richards 2001; Kannass and Colombo 2007; Sillar and Sigman 2008). Children with autism often display atypical development of attention. The processes in which these abnormalities manifest, however, are yet to be determined (Ames and Fletcher-Watson 2010). Despite the high prevalence of attentional difficulties seen in

(Ames and Fletcher-Watson 2010). Despite the high prevalence of attentional difficulties seen in children with autism, these difficulties are not considered a core characteristic of the disorder as specified by the fourth version of the Diagnostic and Statistical Handbook of Mental Disorders (DSM IV 1994), but rather an associated symptom of ASD.

Behavior is acted upon using visual information from the environment. For example, safe driving is largely dependent on drivers attending to stoplights, signs, pedestrians, and other cars and ignoring distracting, irrelevant environmental stimuli. The breadth of attention literature identifies several components of domain-specific and domain-general attending. Visual attention, in particular, plays a large role in domain-specific attention, such as social attention. Social attention is the

plays a large role in domain-specific attention, such as social attention. Social attention is the preferential selection of social over nonsocial stimuli for attention and has been the subject of much research due to its high correlation with later social developmental processes, such as joint attention, theory of mind, and language development (Adamson et al. 2009; Ames and Fletcher-Watson 2010; Mundy and Newell 2007; Sodian and Thoermer 2008). Moreover, social attention is of particular

2010; Mundy and Newell 2007; Sodian and Thoermer 2008). Moreover, social attention is of particular interest to the study of autism due to its relation to social interactions and communication, two core deficits of the disorder.

Attention may be subdivided into the ability to focus, sustain, shift, and encode (Goldstein et al. 2001; Zubin 1975). Focused attention is the ability to concentrate and perform a task on a specific stimulus in the midst of distracting stimuli. Sustained attention is defined as the capacity to maintain attention on a target stimulus over a prolonged period of time. Shifting attention is the ability to effectively transfer concentration from one stimulus to another. Encoding attention is the

to effectively transfer concentration from one stimulus to another. Encoding attention is the ability to intake and interpret information from the environment (Goldstein et al. 2001). Research on these specific skills may be used to identify which aspects of attention children with autism seem to struggle with most and, conversely, which areas of attention develop typically.

A comprehensive understanding of attention must include a description of environmental stimuli that help an individual to attend. Attention cueing, that is, attention directed by environmental prompts, affects what stimuli humans attend to; these environmental prompts are identified as exogenous and endogenous factors. Exogenous cues, those that activate “bottom-up” processes, are derived from stimuli properties (e.g., size, color) and evoke involuntary attention (Corbetta and Shulman 2002).

stimuli properties (e.g., size, color) and evoke involuntary attention (Corbetta and Shulman 2002). Endogenous cues, on the other hand, often characterized as activating “top-down” processes, evoke conscious and voluntary attention control through cognitive processes, learned behavior, or past experiences (Corbetta and Shulman 2002; Hauer and MacLeod 2006). In this way, previous experiences and learned behaviors influence on what or where the child attends.

The multitude of cognitive, social, and language developmental skills learned during play make free play an important setting in which to study attention in children. Ruff and Capozzoli (2003) studied the developmental trajectory of visual attention during play and identified three types of attention. Causal attention is defined at looking at objects (e.g., toys), but not physically engaging with them; settled attention is looking at and manipulating an object; and focused attention is

with them; settled attention is looking at and manipulating an object; and focused attention is concentrating on an object intently and may include facial expressions and extraneous body movement in order to bring the object closer to the face or body. Collectively, the study of attention covers a wide array of specific topics, all of which hold importance for a comprehensive understanding of the topic and for the development of interventions aimed at healthy development.

### Historical Background  Attention has been a topic of study for decades by researchers and clinicians alike. Because of the high occurrence of attention deficits in autism, this topic has been the focus of numerous studies in autism research, in particular. The discourse of processes and causes of this apparent attention deficit has evolved over time. Early researchers hypothesized that attention difficulties in children with autism were due to hypo- or hyperarousal. That is, some researchers

difficulties in children with autism were due to hypo- or hyperarousal. That is, some researchers concluded that arousal modulation in particular, was a potential cause of low attention abilities (Hutt et al. 1964; Ornitz and Ritvo 1968). Other investigators attributed limited attention skills to over-selectivity or what some referred to as “tunnel vision,” that is, intense attention to specific details in combination with a lack of interpretation of outside environmental cues (Lovaas et al.

details in combination with a lack of interpretation of outside environmental cues (Lovaas et al. 1979; Rincover and Ducharme 1987). More recently, it has been hypothesized that attention problems may be due to difficulties in prioritizing relevant stimuli and disregarding irrelevant stimuli (Bryson et al. 1990; Burack 1994). Furthermore, Ornitz and colleagues (1988) proposed that children with autism struggle in attention shifting, in particular, because they lack an interest in people or

autism struggle in attention shifting, in particular, because they lack an interest in people or social stimuli (Ornitz 1988). Previous studies have also dichotomized attention in studying auditory and visual attention and found that children with autism differed from typical children in auditory attention (Casey et al. 1993) but not in visual attention (Pascualvaca et al. 1998). This finding, however, is inconsistent with more recent findings concerning visual attention in the literature

however, is inconsistent with more recent findings concerning visual attention in the literature (Goldstein et al. 2001; Leekam et al. 2000) and may be due to differences in measurement (Ames and Fletcher-Watson 2010). With technological advances in detection tools, so came a new wave of studies addressing biological hypotheses for attention deficits. Throughout the past two decades, researchers hypothesized that inattentive behavior may be due to neural abnormalities in areas such as the

hypothesized that inattentive behavior may be due to neural abnormalities in areas such as the parietal lobe and the frontal lobe (Courchesne et al. 1993, 1994; Ornitz 1988; Pascualvaca et al. 1998).

### Current Knowledge  Developmental studies on attention reveal that attention evolves over the course of childhood and different patterns of attention behaviors are observed over time. The duration of time infants spend looking at objects or people, which reflects differences in underlying attention processes (Kannass and Oakes 2008), increases from birth through 8 to 10 weeks, then decreases between 3 and 5 or 6 months, and remains stable or slightly increases thereafter (Colombo 2001,

between 3 and 5 or 6 months, and remains stable or slightly increases thereafter (Colombo 2001, 2002). The initial increase of look duration may be due to steady increases in arousal and alertness, whereas the decrease of look duration may be indicative of improvements in information processing. The plateau reached near the first year is likely indicative of endogenous factors or top-down processes manifesting (Corbetta and Shulman 2002; Colombo 2001, 2002).

Children with autism appear to show different patterns of attention development than their typical peers. For example, the top-down processing that develops around the first year appears to pose difficulty for children with autism as compared to typically developing children (Ames and Fletcher-Watson 2010; Ames and Jarrold 2007; Leekam et al. 2000). Goldstein et al. (2001) also found that individuals with autism were different from their typical counterparts in their abilities to focus and shift

with autism were different from their typical counterparts in their abilities to focus and shift attention, but were not different in their abilities to sustain and encode attention (Goldstein et al.). Another study found that children with autism had more circumscribed, preservative, and detail-oriented attention (Sasson 2008). The results of studies involving eye tracking and visual attention in the context of social stimuli have also found differences among individuals with autism. One study

the context of social stimuli have also found differences among individuals with autism. One study indicated that when shown images of objects and people, individuals with autism generally attended to the nonsocial aspects of the picture, that is, objects rather than faces. Further, the investigation found that when individuals with autism did attend to social images, such as a human face, they looked at noncritical social elements, such as the nose rather than the eyes (Klin et al. 2002).

looked at noncritical social elements, such as the nose rather than the eyes (Klin et al. 2002). Another study found that children with autism have difficulties processing both social and nonsocial information (Leekam et al. 2000). Collectively, the literature suggests that individuals with autism lack attention to social stimuli which undoubtedly affects social and emotional learning.

### Future Directions  Attention abilities, from infancy throughout childhood, can have several effects on social relationships, language development, and cognitive development. Future work on attention in autism should aim to examine these processes in natural settings to more appropriately capture variables that facilitate and inhibit successful attention for this population within a variety of contexts, such as their social relationships and academic settings. Moreover, there is a need for

contexts, such as their social relationships and academic settings. Moreover, there is a need for greater longitudinal work in this area in order to understand how attentional processes develop over time and the extent to which these processes impact social and cognitive outcomes for individuals with ASDs (Ames and Fletcher-Watson 2010). Finally, attention has the potential to be an invaluable early detection tool for autism diagnoses. Children with autism face early and pervasive abnormalities

detection tool for autism diagnoses. Children with autism face early and pervasive abnormalities in attention abilities (Allen and Courchesne 2001; Elsabbagh et al. 2009). The developmental course of attention in typical development has been outlined by previous investigations; future research could use such knowledge to examine attention in children at risk for autism early in infancy. Earlier screening and detection to earlier intervention which has been shown to yield improved outcomes for

screening and detection to earlier intervention which has been shown to yield improved outcomes for children with autism and other developmental delays.

### See Also  *   Joint Attention *   RJA/IJA (Initiating/Responding to Joint Attention) ## Attention Deficit/Hyperactivity Disorder  ### Synonyms  ADD; ADHD; Attention deficit disorder; Hyperkinetic disorders; Minimal brain damage; Minimal brain dysfunction; Syndrome of deficits in attention, motor control, and perception (DAMP)

### Short Description or Definition  Attention deficit/hyperactivity disorder (ADHD) is one of the most common psychiatric disorders in children and adolescents. It is characterized by inattention, impulsivity, and hyperactivity. Its rate decreases with the increase of age. ADHD usually starts in childhood and continues through adolescence into adulthood. The burden and psychosocial functioning impairment of ADHD is farther than its inattention, impulsivity, and hyperactivity symptoms. There

impairment of ADHD is farther than its inattention, impulsivity, and hyperactivity symptoms. There are many controversies and scientific debates about ADHD (Biederman and Faraone 2005; Furman 2008).

### Categorization  According to DSM-IV, there are three subtypes of ADHD called “predominantly inattentive,” “predominantly hyperactive-impulsive,” and “combined.” ICD-10 lacks this categorization.
 ### Epidemiology  The prevalence of ADHD in children is estimated to be about 8–12% (Biederman and Faraone 2005). The rate of ADHD in boys is three times more than girls, and this ratio in the clinical sample is six to nine times (Ghanizadeh et al. 2008).

### Natural History, Prognostic Factors, and Outcomes  From about two centuries ago, children with symptoms of inattention, impulsivity, and hyperactivity have been described (Crichton 2008; Lange et al. 2010). Heinrich Hoffmann described some symptoms of ADHD in the story of Fidgety Phil (Hoffmann (1948) cited by Lange et al. (2010)). Moral control defect was introduced by Sir George Frederic Still ((Still 1902) cited in Lange et al. (2010)). He reports that these children cannot internalize

((Still 1902) cited in Lange et al. (2010)). He reports that these children cannot internalize rules and limits. Then, the term of “postencephalitic behavior disorder” was introduced after the worldwide influenza epidemic (Rothenberger and Neumärker 2005) cited in Lange et al. (2010). The terms of “minimal brain damage” and “minimal brain dysfunction” were described (Hoffmann 1948). The name was changed to “hyperkinetic reaction of childhood” in the second edition of the Diagnostic and

was changed to “hyperkinetic reaction of childhood” in the second edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-II) (American Psychiatric Association (APA) (1967). Diagnostic and statistical manual for mental disorders). Overactivity, restlessness, distractibility, and short attention span were the characteristics of this disorder (APA (1967). Diagnostic and statistical manual for mental disorders). In the third edition of the Diagnostic and Statistical Manual of

manual for mental disorders). In the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III), the disorder was called “attention deficit disorder (ADD): with and without hyperactivity.” In this edition, the focus was on inattentiveness rather than hyperactivity (APA (1980). Diagnostic and statistical manual (DSM-III)). In addition, it was stressed that hyperactivity was no more a necessary criterion for diagnosis of this disorder. From 1987, revision of the third

was no more a necessary criterion for diagnosis of this disorder. From 1987, revision of the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III-R), this disorder was renamed “attention deficit/hyperactivity disorder” (ADHD) (APA (1987). Diagnostic and statistical manual (DSM-III, revised)). In the DSM-III-R, the subtype of “ADD without hyperactivity” was replaced with the category of “undifferentiated ADD” (Lange et al. 2010). From the fourth edition of the

with the category of “undifferentiated ADD” (Lange et al. 2010). From the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) (APA (1994). Diagnostic and statistical manual (DSM-IV)), the three subtypes of ADHD including “predominantly inattentive type,” “predominantly hyperactive-impulsive type,” and “combined type with symptoms of both dimensions” were presented (Lahey et al. 1994). There was no change regarding ADHD in the text revision of the fourth edition

(Lahey et al. 1994). There was no change regarding ADHD in the text revision of the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) (APA (2000). Diagnostic and statistical manual (DSM-IV, Text Rev.)). It is expected that DSM-V will be published in 2012.

Multiple comorbid disorders and parent-reported ADHD severity are associated with the poorer psychosocial quality of life (Klassen et al. 2004). The type of comorbidity is also associated with the quality of life. Lower quality of life is associated with the comorbidity of oppositional defiant disorder, conduct disorder, and learning disorder (Klassen et al. 2004). There is a positive short-term effect of medication on quality of life in children, adolescents, and adults with ADHD (Coghill

effect of medication on quality of life in children, adolescents, and adults with ADHD (Coghill 2010). Comorbidity of ODD with ADHD is associated with more severe ADHD symptoms, peer problems, and family problems (Ghanizadeh and Jafari 2010). Children and adolescents with ADHD have poorer social and communication skills leading to more peer relationship problems. More than two-thirds of them have no close friends (Wehmeier et al. 2010). So, they are more frequently rejected by others. This

have no close friends (Wehmeier et al. 2010). So, they are more frequently rejected by others. This makes them more prone to join to deviant peer groups, injuries, occupational problems, educational problems, cigarettes, and substance use disorders (Biederman and Faraone 2005). The symptoms of ADHD continue from childhood into adult. However, most of them will not meet the full diagnostic criteria in adult but they will meet the diagnosis of ADHD in partial remission (Fischer et al. 2002).

### Clinical Expression and Pathophysiology  While there are many controversies about ADHD, the improvement of some symptoms after pharmacotherapy supports that there are neurobiological causes for the heterogeneous nature of ADHD. There is a large gap in our knowledge and current literature regarding ADHD. However, it is clear that there is not any one specific brain area or genetic or neurochemical factor as the etiology of ADHD. The etiology of ADHD is complex (Steinhausen 2009). The

factor as the etiology of ADHD. The etiology of ADHD is complex (Steinhausen 2009). The heritability of ADHD is reported in twin and adoption studies. However, more molecular genetic studies are necessary to indicate the complex genetics and the interaction of gene by environment in ADHD (Biederman and Faraone 2005; Nigg et al. 2010).

There is not enough evidence supporting that ADHD is caused by foods or food additives (Biederman and Faraone 2005), while lead is reported to be associated with ADHD (Ghanizadeh 2011). Exposure to toxins such as mercury, lead, manganese, and polychlorinated biphenyls (PCBs) and pregnancy and delivery complications (such as eclampsia, maternal age, prenatal alcohol exposure, maternal smoking, fetal postmaturity, duration of labor, fetal distress, low birth weight, and hemorrhage) are other risk

postmaturity, duration of labor, fetal distress, low birth weight, and hemorrhage) are other risk factors associated with ADHD (Banerjee et al. 2007). Meanwhile, TV viewing is not a risk factor for ADHD (Banerjee et al. 2007). From the psychosocial factors, low family cohesion, exposure to parental psychopathology especially maternal psychopathology, low maternal education, low social class, and single parenthood are important risk factors for ADHD (Biederman and Faraone 2005). Brain structural

parenthood are important risk factors for ADHD (Biederman and Faraone 2005). Brain structural studies do not report consistent findings for ADHD. However, most of imaging studies delineated overall decrease in total brain size, the caudate nucleus, prefrontal cortex white matter, corpus callosum and the cerebellar vermis (Tripp and Wickens 2009). Some of these areas have a high density of dopamine receptors. Neuropsychological studies show the impairment of vigilance attention, executive

receptors. Neuropsychological studies show the impairment of vigilance attention, executive function, working memory response, and motivation in some children with AHD (Tripp and Wickens 2009). Brain maturation is delayed in ADHD (Curatolo et al. 2009). Finally, children with ADHD may have difficulties in social exchanges such as sharing and cooperation with peers. They are self-centered, impulsive, and commanding (Wehmeier et al. 2010).

### Evaluation and Differential Diagnosis  In many countries, ADHD diagnoses are generally made using Diagnostic and Statistical Manual, Fourth Edition, Text Revision (APA (2000). Diagnostic and statistical manual (DSM-IV, Text Rev.)). According to 4th Edition, Text Revision (DSM-IV-TR) criteria, there are two groups of symptoms including (a) attention deficit, (b) hyperactivity, or impulsivity. Six or more items from at least one of the groups are required for ADHD diagnosis. In addition,

Six or more items from at least one of the groups are required for ADHD diagnosis. In addition, functional impairments in at least two different settings such as at home, school, and nursery are required. In other countries, especially in Europe, International Classification of Diseases-10 (ICD-10) is used (World Health Organization (WHO) 1992). Hyperkinetic disorder is the ICD-10 equivalent of ADHD diagnosis (WHO 1992). In ICD-10, several items from attention deficit, hyperactivity, and

of ADHD diagnosis (WHO 1992). In ICD-10, several items from attention deficit, hyperactivity, and impulsivity are required to reach diagnosis. Therefore, it is expected that the rate of ADHD in countries using DSM-IV-TR criteria would be reported higher than that of those countries using ICD-10 criteria.

ADHD diagnosis is subjective using the diagnostic systems criteria. There is not any objective diagnostic test or any biomedical laboratory test for it. However, the ADHD diagnosis is reliable when well-trained raters assess and agree the presence of its symptoms (Biederman and Faraone 2005). There is a weak correlation between different informants such as parents and teachers for the rating of ADHD symptoms. In other words, they usually do not agree on their assessment of symptoms in children

symptoms. In other words, they usually do not agree on their assessment of symptoms in children with ADHD. The evaluation of children in different situations can be an explanation for this disagreement. Teachers evaluate children in school while the children are taking medication. Sometime, parents may report some symptoms that the symptoms are not reported by teachers. In clinical samples, ADHD is usually comorbid with other psychiatric disorders. The rate of at least one comorbid psychiatric

is usually comorbid with other psychiatric disorders. The rate of at least one comorbid psychiatric disorder in children with ADHD is more than 80% (Ghanizadeh et al. 2008). Other disruptive behavior disorders (oppositional defiant disorder (ODD) or conduct disorder (CD)) and anxiety disorders are the most common comorbid disorders in children with ADHD. The rate for ODD and CD is about 59.3% and 13.6% (Ghanizadeh et al. 2008). Some of the other comorbid disorders are mood disorders, tic

and 13.6% (Ghanizadeh et al. 2008). Some of the other comorbid disorders are mood disorders, tic disorder, enuresis, and encopresis. It is interesting that the parent of children with ADHD usually suffer from psychiatric disorders. The lifetime prevalence of ADHD in fathers and mothers of children with ADHD are 45.8% and 17.7%, respectively. Major depressive disorder is very frequent in the parents. The rate in father and mothers are 48.1% and 43.0%, respectively (Ghanizadeh et al. 2008).

### Co-occurrence of ADHD and Autism  ADHD DSM-IV-derived items do not overlap with autism spectrum disorder (Ghanizadeh 2010), and the comorbidity of ADHD and autism is precluded in the DSM-IV-TR. Therefore, the symptoms of inattentiveness, hyperactivity, or impulsivity in individuals with autism originate from autism, not ADHD. Meanwhile, there are many individuals who meet diagnostic criteria for both ADHD and autism. In addition, many patients with Asperger’s syndrome are screened with

for both ADHD and autism. In addition, many patients with Asperger’s syndrome are screened with concerns about ADHD (Murray 2010). The children with autism my severely attend to their interest and do not attend to other factors in their environment. It can be interpreted as inattentiveness. Also, sometimes, their stereotypic motor behavior can be interpreted as hyperactivity (Murray 2010). However, there are many published studies reported the co-occurrence of ADHD and autism. About 40–78% of

there are many published studies reported the co-occurrence of ADHD and autism. About 40–78% of individuals with autism meet diagnostic criteria for DSM-IV ADHD (Murray 2010). Eighty-seven percent of children with autism spectrum disorder have at least one of the three components of ADHD (Ames and White 2011). The rate of autistic traits in children with ADHD is from one-third to one-fifth (Grzadzinski et al. 2011).

In addition, the subtype of ADHD is associated with the severity of difficulties in autism. For example, language and social problems are more common in those with both autism and ADHD-inattentive subtype. Moreover, less symptoms of autism are reported in those with ADHD-hyperactivity subtype. While internalizing behavior problems are usually seen in autism, externalizing behavior problems are more common in those with ADHD. A combination of externalizing and internalizing behavior problems are

common in those with ADHD. A combination of externalizing and internalizing behavior problems are reported in those with both ADHD and autism (Murray 2010). Clinical profiles and outcomes of children with both ADHD and autism are different with that of those children with autism alone. They have severe social problems and poorer outcomes. Furthermore, executive function is more impaired in the individuals with both ADHD and autism than those with ADHD or autism alone. Motor coordination

the individuals with both ADHD and autism than those with ADHD or autism alone. Motor coordination abnormalities are different between ADHD and autism. While motor response inhibition is more common in ADHD, motor planning impairment is more common in autism (Murray 2010). About two-thirds of children with the syndrome of deficits in attention, motor control, and perception (DAMP) meet diagnostic criteria for autism spectrum disorders. Comorbidity with developmental coordination problems is more

for autism spectrum disorders. Comorbidity with developmental coordination problems is more likely to co-occur with autism symptoms than those with ADHD alone. Autism, ADHD, and dyslexia overlap genetically (Smalley et al. 2005). ADHD can be dissociated from autism spectrum disorders regarding executive dysfunction and response inhibition. Those with autism spectrum disorders are slow and accurate, while those with ADHD are impulsive (Johnston et al. 2011). It is expected that the comorbidity

while those with ADHD are impulsive (Johnston et al. 2011). It is expected that the comorbidity of ADHD and autism spectrum disorders will be allowed in DSM-V. Then, autism will not be an exclusive criterion for ADHD diagnosis.

### Treatment  The educating and counseling of parents (Ghanizadeh 2007), teachers (Ghanizadeh et al. 2006), and general physicians (Ghanizadeh and Zarei 2010) about ADHD is highly necessary and recommended. Many of parents, teachers, and medical service providers have not enough and updated knowledge towards ADHD symptoms and its management. Behavioral parent training is encouraged (van den Hoofdakker et al. 2007). Drug therapy with stimulant drugs (Cornforth et al. 2010) and atomoxetine

Hoofdakker et al. 2007). Drug therapy with stimulant drugs (Cornforth et al. 2010) and atomoxetine (Vaughan et al. 2009) is better than no drug therapy. However, there is not enough evidence indicating any difference between these medications regarding their efficacy or side effects (King et al. 2006).

The precise mechanism of stimulants in ADHD is not known. Noradrenaline and dopamine neurotransmitter systems are involved in ADHD. Methylphenidate and dextroamphetamine are stimulant medications which are effective in the management of ADHD. Atomoxetine is a nonstimulant catecholaminergic medication. They improve ADHD symptoms through increasing activation in cortical and subcortical regions involved in attention and executive functions (Curatolo et al. 2009). Meanwhile, there is a concern

involved in attention and executive functions (Curatolo et al. 2009). Meanwhile, there is a concern about the possible association of atomoxetine and increased suicidal behavior (Garnock-Jones and Keating 2009). There are concerns about the higher rate of side effects of stimulants in individuals with both autism and ADHD than those with ADHD alone. In addition, methylphenidate efficacy in autism is less than ADHD (Stigler et al. 2004). While the response rate is limited up to 25%, the rate of

is less than ADHD (Stigler et al. 2004). While the response rate is limited up to 25%, the rate of side effects reaches to 60% (Stigler et al. 2004). Dexamphetamine may worsen the symptoms (Handen et al. 2000). Clonidine and guanfacine are α-2 agonists with promising efficacy on hyperactivity, impulsivity, irritability, explosive behaviors, stereotypies, and social interaction (Scahill et al. 2006). Atomoxetine selectively inhibits the presynaptic norepinephrine transporter. There are

al. 2006). Atomoxetine selectively inhibits the presynaptic norepinephrine transporter. There are contradictory reports about the efficacy of atomoxetine on ADHD symptoms in autism. While an open-label study supported its efficacy (Posey et al. 2006), others did not report a significant effect (Charnsil 2011). Donepezil as a anticholinesterase inhibitor may decrease some symptoms of ADHD in children with autism (Yoo et al. 2007). Further controlled trials are required to detect the significant

with autism (Yoo et al. 2007). Further controlled trials are required to detect the significant gains of these medications on autism. There are open-label studies promising the efficacy of atypical antipsychotics, such as risperidone, quetiapine, and aripiprazole, on hyperactivity symptom in autism (Murray 2010).

### See Also  *   Affective Disorders (Includes Mood and Anxiety Disorders) *   Antipsychotics: Drugs *   Aripiprazole *   Asperger Syndrome *   Atomoxetine *   Attention *   Atypical Antipsychotics *   Autism *   Autistic Disorder *   Behavior *   Behavior Modification *   Behavior Rating Scale (BRS) *   Cerebral Cortex *   Clonidine *   Communication Disorder/Communication Impairment *   Comorbidity *   Conduct Disorder *   Developmental Milestones *   Dextroamphetamine *   DSM-III *

Comorbidity *   Conduct Disorder *   Developmental Milestones *   Dextroamphetamine *   DSM-III *   DSM-III-R *   DSM-IV *   Dyslexia *   Education *   Educational Therapy *   Encopresis *   Enuresis *   Epidemiology *   Executive Function (EF) *   Expressive Language Disorder *   Guanfacine *   ICD 10 Research Diagnostic Guidelines *   Methylphenidate *   Mood Disorders *   Motivation *   Motor Planning *   Neurotransmitter *   Norepinephrine *   Pervasive Developmental Disorder *   Repetitive

*   Neurotransmitter *   Norepinephrine *   Pervasive Developmental Disorder *   Repetitive Behavior *   Risperidone *   Stereotypic Behavior *   Stimulant Medications *   Tics *   Treatment Integrity  ## Attention Network Tests in ASD  ### Definition  Attention has been conceptualized as a multi-component system comprised of three isolable but interacting networks: alerting, orienting, and executive control (Posner and Petersen 1990). Alerting refers to the achievement and maintenance of a

control (Posner and Petersen 1990). Alerting refers to the achievement and maintenance of a state of readiness to respond, orienting refers to the selection of an input pathway for further processing, and executive control refers to resolution of conflict between competing inputs and responses. The Attention Network Test (ANT), first described by Fan et al. (2002), was developed as a computerized tool for assessing the efficacy of each network.

In the ANT, participants are asked to fixate on a central cross responding to target arrows, which appear either above or below fixation. Targets are sometimes preceded by asterisks appearing at the center of the screen (center cue), above and below fixation simultaneously (double cue), or at the location of a subsequent target (spatial cue). In other words, cues may predict the onset (alerting cues) and/or location (orienting cues) of the target arrow. Finally, target arrows are flanked by arrows

and/or location (orienting cues) of the target arrow. Finally, target arrows are flanked by arrows pointing in the same direction, arrows pointing in the opposite direction, or neutral bars. Network scores are typically calculated as differences in mean reaction time (RT) in opposing conditions. The orienting effect is the RT difference between center cue and spatial cue conditions, the alerting effect is the RT difference between no-cue and double-cue conditions, and the executive control

effect is the RT difference between no-cue and double-cue conditions, and the executive control effect is the RT difference between congruent and flanker conditions.

### Historical Background  Since the ANT was first introduced by Fan et al. (2002), substantial evidence has emerged supporting the biological validity of the three-network model. Unique neural patterns associated with each network have been identified using both electroencephalography (Fan et al. 2007) and functional magnetic resonance imaging (Fan et al. 2005). Furthermore, genetic studies suggest that there are heritable factors for executive control, as measured by the ANT (Fan et al. 2001).

Although the three attention networks are biologically and functionally distinct, and network scores are reliable across sessions (Ishigami and Klein 2010), frequently reported interaction effects between cue and flanker type suggest that these networks are not entirely independent (Fan et al. 2002; Ishigami and Klein 2010; Rueda et al. 2004). True independence is theoretically unlikely, assuming there is constant communication among functionally distinct brain regions and networks. Indeed,

there is constant communication among functionally distinct brain regions and networks. Indeed, variations of the ANT have provided compelling evidence that the processes of orienting, alerting, and executive control do, in fact, modulate one another (e.g., Callejas et al. 2005; Fan et al. 2009; Fuentes and Campoy 2008)

Variants of the ANT have been developed to suit a range of purposes. For example, the child-ANT (ANT-C) features colorful, fish-shaped stimuli, which are meant to be more engaging for younger participants (Rueda et al. 2004). A lateralized version of the ANT (Greene et al. 2008) has been used to effectively isolate attentional processes in the left and right hemispheres. To better detect network differences, a revised version of the original ANT (ANT-R; Fan et al. 2009) modified a number of

differences, a revised version of the original ANT (ANT-R; Fan et al. 2009) modified a number of parameters, such as visual angle, cue-to-target interval, target duration, and target placement. The ANT-R also included orienting cues presented at locations other than that of the target, known as “invalid” cues. In another version known as the ANT-interaction (ANT-I; Callejas et al. 2004), 50% of all spatial cues are invalid (i.e., they are “uninformative”). This version of the task additionally

spatial cues are invalid (i.e., they are “uninformative”). This version of the task additionally introduced auditory alerting tones to facilitate exploring the interaction between alerting and orienting networks. Recently, the ANT has been adapted into a game-like format in an effort to improve engagement relative to previous versions of the test. In the AttentionTrip (Klein et al. 2017), the participant uses a wheel to steer a spaceship through a wormhole while “shooting” target stimuli as

participant uses a wheel to steer a spaceship through a wormhole while “shooting” target stimuli as they appear on the screen. This version of the task has been used with high-functioning adults on the autism spectrum (Mash et al. 2018) and may also demonstrate utility in research settings with young or lower-functioning individuals.

### Current Knowledge  To date, there is a relatively small but growing body of literature reporting attention network scores in individuals with ASD. These studies have inconsistently reported significant differences between ASD and typically developing (TD) groups in all three major networks. Furthermore, these experiments vary considerably with respect to method (i.e., version of the ANT used), outcome variables reported (accuracy, reaction time), sample size, and age of the sample. In

used), outcome variables reported (accuracy, reaction time), sample size, and age of the sample. In several studies, the sample sizes are quite small (e.g., N ¼ 12) and therefore have limited power to detect negative results. However, several general themes have emerged from the extant literature that may guide future research.

#### Orienting  Problems with attention orienting and disengagement have been well-documented in individuals with ASD across the life span (Sacrey et al. 2014). Reduced orienting efficiency has been corroborated by several studies using versions of the ANT. In a sample of children and adolescents with and without ASD (ages 8–19), Keehn et al. (2010) found smaller orienting network scores on the original ANT in the ASD group, likely reflecting reduced benefit of an orienting cue compared to the TD

ANT in the ASD group, likely reflecting reduced benefit of an orienting cue compared to the TD group. Less efficient orienting was similarly reported by Mutreja et al. (2016) in younger children with ASD (5–11 years) using the ANT-C. In a very small sample of older adolescents (six ASD and six TD, ages 16–17), Hames et al. (2016) did not find any significant group differences on the ANT-C with respect to orienting reaction time. However, they reported that the ASD group was more error-prone on

to orienting reaction time. However, they reported that the ASD group was more error-prone on orienting trials and that they tended to over-recruit brain regions typically associated with executive control during the orienting task. Although the above studies appear to implicate atypical orienting in younger individuals with ASD, other work has found relatively typical orienting on the ANT in both children (Ip et al. 2017; Samyn et al. 2017) and young adults (Fan et al. 2012; Mash et al. 2018)

children (Ip et al. 2017; Samyn et al. 2017) and young adults (Fan et al. 2012; Mash et al. 2018) on the autism spectrum. Considering the critical role of attention orienting in early social development (Keehn et al. 2013), this is an important area of clarification for future research.

#### Alerting  Alerting network scores may reflect changes in both tonic and phasic alertness. Tonic alertness refers to intrinsic arousal, whereas phasic alertness is associated with rapid changes induced by a stimulus. Atypically large network scores may suggest reduced tonic alertness, resulting in slower reaction times in the absence of an alerting cue. Very small network scores, on the other hand, may be interpreted as reduced phasic alertness, resulting in only marginal improvements in

hand, may be interpreted as reduced phasic alertness, resulting in only marginal improvements in reaction time in the presence of an alerting cue. In a study comparing typically developing children to those with ASD and attention-deficit/hyperactivity disorder (ADHD), alerting network scores on the ANT-I were significantly larger in the ADHD group, but were comparable in the ASD and TD groups (Samyn et al. 2017). A study using the original ANT reported no significant group differences in alerting

et al. 2017). A study using the original ANT reported no significant group differences in alerting between ASD and TD children and adolescents, but alerting network score size was associated with symptom severity in the ASD group. In contrast, Mash et al. (2018) reported reduced alerting network scores in young adults using the original ANT, but not the AttentionTrip. In another sample of young adults tested on the ANT-R, Fan et al. (2012) reported that the ASD group made more errors in the

adults tested on the ANT-R, Fan et al. (2012) reported that the ASD group made more errors in the absence of a cue, suggesting potentially poorer tonic alertness. Furthermore, using fMRI, they found that alerting errors were associated with reduced brain activity in the medial frontal gyri and caudate. As with orienting network scores, some research reported no significant group differences in alerting networks in ASD (Ip et al. 2017; Mutreja et al. 2016; Ridderinkhof et al. 2018; Samyn et al.

networks in ASD (Ip et al. 2017; Mutreja et al. 2016; Ridderinkhof et al. 2018; Samyn et al. 2017).

#### Executive Control  In general, studies of both children and adults measuring reaction time differences between congruent and incongruent flanker conditions on various versions of the ANT have found similar executive control networks in typical development and ASD (Fan et al. 2012; Hames et al. 2016; Ip et al. 2017; Keehn et al. 2010; Mash et al. 2018; Mutreja et al. 2016; Ridderinkhof et al. 2018; Samyn et al. 2017). One of these studies described an inverse relationship between IQ and the

2018; Samyn et al. 2017). One of these studies described an inverse relationship between IQ and the size of the executive control network in children and adolescents with ASD (Keehn et al. 2010), suggesting that inefficient executive processes (i.e., slower reaction time on incongruent trials) may be directly related to general cognitive ability. Supporting this possibility, they did not find any relationship between executive control and ASD symptoms. This study additionally reported that the

relationship between executive control and ASD symptoms. This study additionally reported that the alerting and executive control networks demonstrated unusually high interdependence in ASD individuals. The authors speculated that this might reflect compensatory executive strategies to control alertness in individuals with poorer intrinsic regulation of arousal. Although reaction times tend to be similar in ASD and TD individuals, there is some evidence that ASD individuals show significantly

be similar in ASD and TD individuals, there is some evidence that ASD individuals show significantly reduced accuracy on incongruent trials relative to congruent trials, resulting in larger accuracy difference scores. Mutreja et al. (2016) reported this effect in children (ages 5–11) using the ANT-C; a similar finding that did not reach statistical significance was reported in a larger sample of slightly older group of individuals aged 8–23 (Ridderinkhof et al. 2018). Using the ANT-R, Fan et al.

older group of individuals aged 8–23 (Ridderinkhof et al. 2018). Using the ANT-R, Fan et al. (2012) demonstrated poorer executive control accuracy in adults with ASD; further, they found that less accurate performance on the flanker component of the task was associated with reduced activation in the anterior cingulate cortex and more severe language and communication symptoms in the ASD group. Therefore, although individuals with ASD do not appear to respond more slowly to incongruent flankers,

although individuals with ASD do not appear to respond more slowly to incongruent flankers, error analysis suggests that they may trade speed for accuracy on this task. Furthermore, it appears that accuracy, but not reaction time, may relate to behavioral and brain markers of ASD.

### Future Directions  Studies examining attention using ANT-like tasks have provided some insight into attention network function in individuals with ASD. For example, participants on the autism spectrum generally tend to demonstrate reduced orienting efficiency, as well as poorer task accuracy when resolving conflict. However, even these relatively well-established findings have not been consistent across studies. Although ANT tasks are increasingly used and reported in ASD research, this body

across studies. Although ANT tasks are increasingly used and reported in ASD research, this body of literature remains fairly small and heterogeneous. There is great deal of variability with respect to participant age, sample size, ANT version, and outcome measures reported, which complicates direct comparison of findings. However, further study with adequate sample sizes may help to clarify the details of some of the emerging themes in this field.

A main disadvantage of the ANT is its length and repetitive nature. This may pose a challenge for populations that may have difficulty with sustained attention. Often, such individuals are of greatest interest to researchers studying attention. However, insufficient or variable effort throughout the entire task may preclude accurate interpretation of the resulting data. A recently developed, game-like version of the ANT (the AttentionTrip; Klein et al. 2017) may help to mitigate problems with

version of the ANT (the AttentionTrip; Klein et al. 2017) may help to mitigate problems with engagement in younger or cognitively impaired groups. The AttentionTrip has been used successfully in high-functioning adults on the autism spectrum (Mash et al. 2018), but future work may establish whether it can improve engagement in children or lower-functioning participants with ASD.

### See Also  *   Arousal *   Attention *   Cognitive Skills *   Executive Function (EF) *   Orienting Response   The Attention Process Training (APT and APT-II) program is a cognitive rehabilitation intervention that targets focused, sustained, selective, alternating, and divided attention (Sohlberg and Mateer 1987; Sohlberg et al. 2001). APT developers define focused attention as the ability to respond to specific stimuli. Sustained attention refers to the ability to consistently respond

to respond to specific stimuli. Sustained attention refers to the ability to consistently respond during a continuous or repetitive activity. Selective attention is the ability to activate and inhibit responses based on discrimination of stimuli. Alternating attention refers to aptitude for mental flexibility, and divided attention has been defined as the ability to engage in multiple tasks simultaneously.

In general, process training involves implementing a structured treatment program to improve attention skills in a variety of areas (Sohlberg et al. 2001). The APT materials consist of tasks that are hierarchically organized to target sustained, selective, alternating, and divided attention (Sohlberg et al. 2001). The hierarchical structure is intended to allow for basic skills to be constantly utilized while developing and practicing more complex skills (Palmese and Raskin 2000). Auditory

utilized while developing and practicing more complex skills (Palmese and Raskin 2000). Auditory attention tapes and visual activities are used for some of the tasks. APT also includes exercises to facilitate generalization of skills to daily life (Palmese & Raskin). The APT approach has been referred to as process-specific cognitive rehabilitation because it is intended to improve particular types of attention skills and does not lead to improvements in overall cognitive functioning (Sohlberg

of attention skills and does not lead to improvements in overall cognitive functioning (Sohlberg and Mateer 1987).

### Historical Background  APT was developed by Sohlberg and Mateer (1987) based on experimental attention literature, clinical observation, and patients’ subjective reports of symptoms. It frames attention as a multidimensional cognitive capacity (Sohlberg & Mateer). The APT-II is an extension of the original APT and is designed to target more complex attention impairments (Murray et al. 2006).

### Rationale or Underlying Theory  APT follows a process-specific approach to cognitive rehabilitation in that it is intended to improve functioning in distinct cognitive areas (Sohlberg and Mateer 1987). The rationale underlying APT is that learning specific skills may help improve some of the cognitive problems that result from acquired brain damage (Park et al. 1999). A process-specific approach can be contrasted with the functional adaptation and the general stimulation perspectives. The

can be contrasted with the functional adaptation and the general stimulation perspectives. The functional adaptation approach utilizes task analysis and changes in the environment to assist with the challenges associated with cognitive impairments. The general stimulation approach utilizes tasks that facilitate any type of cognitive processing. These prior approaches to cognitive rehabilitation have been criticized as leading to poor generalizability and lacking a theoretical orientation,

have been criticized as leading to poor generalizability and lacking a theoretical orientation, respectively (Sohlberg and Mateer 1987; Sohlberg et al. 2001).

### Goals and Objectives  The objectives of APTare to improve individuals’ focused attention, sustained attention, selective attention, alternating attention, and divided attention skills following an acquired brain injury, although the program has also been used with other populations. Individualized treatment goals are created based on the needs of the client in each of these areas of attention.

### Treatment Participants  Although APT was designed for use with individuals who have acquired brain injury and most published research on the APT has been based on this population, some researchers have examined the efficacy of APT for individuals with schizophrenia and aphasia. Little is known about the efficacy of the program with other populations. Some have suggested that APT could be beneficial for individuals with autism spectrum disorders (Ozonoff et al. 2005), although published

beneficial for individuals with autism spectrum disorders (Ozonoff et al. 2005), although published efficacy research to date has not been conducted with this population.

### Treatment Procedures  The APT program is comprised of a set of activities that have a common structure and that range in complexity and processing speed requirements (Sohlberg and Mateer 1987). Treatment goals are individualized based on the client’s impairments in each of the attention areas targeted (i.e., sustained, selective, alternating, and divided). Each task is designed to offer practice in one or more levels of attention. The tasks are either client-paced or therapist-paced

practice in one or more levels of attention. The tasks are either client-paced or therapist-paced depending on the nature of the exercise (Park et al. 1999).

The APT-II includes general exercises, each requiring approximately 5 min to complete, for each of the specific areas of attention emphasized in the program (Palmese and Raskin 2000). Four types of activities are incorporated into APT: visual cancelation, auditory cancelation, mental control, and daily life attentional activities (López-Luengo and Vázquez 2003). Within each exercise, there are tasks that increase in speed and difficulty. When the client completes the final activity for a

are tasks that increase in speed and difficulty. When the client completes the final activity for a particular sequence, he or she can advance to the next level. Each exercise is repeated until it is completed successfully according to specified criteria. Some researchers have noted that the linguistic demands of APT tasks need to be taken into account for treatment planning with patients who have language impairments (Murray et al. 2006). In the area of sustained attention, examples of visual

language impairments (Murray et al. 2006). In the area of sustained attention, examples of visual activities include cancelation tasks (e.g., crossing out all the Ps and Cs in a long series of letters) where the client is scored on completion time, omissions, and errors. Audio activities include tasks such as having the client press a button when he or she hears a target stimulus among a set of distracters (e.g., identifying items that are round from a list of words) and is scored for accuracy

(e.g., identifying items that are round from a list of words) and is scored for accuracy (Pero et al. 2006). For selective attention, tasks from sustained attention are included but with more irrelevant and distracting stimuli added (e.g., auditory stimuli recorded over a noisy background). Similar tasks are also incorporated into the alternating attention activities but with instructions to change the target stimuli every 15 seconds. The divided attention activities include completing the

change the target stimuli every 15 seconds. The divided attention activities include completing the visual and auditory cancelation tasks simultaneously, as well as card sorting and Stroop tasks (Pero et al.). Solving math problems and identifying main ideas from paragraphs are also examples of APT tasks (Palmese and Raskin 2000). The program does not specify a particular number of sessions but recommends that response time should be decreased by 35% before moving on to the next task and that

recommends that response time should be decreased by 35% before moving on to the next task and that the client achieve 85% accuracy on each task (Pero et al. 2006). Researchers examining the efficacy of the APT program have generally implemented the intervention for a range of 4–10 weeks at a frequency of one to nine sessions per week (e.g., Coelho 2005; Palmese and Raskin 2000; Sohlberg and Mateer 1987; Sohlberg et al. 2000).

### Efficacy Information  There is some evidence that APT may lead to improvements in specific attentional skills but not in general cognitive functioning. Most of the efficacy research for APT has been based on single-case designs with small sample sizes (e.g., Coelho 2005; Murray et al. 2006; Palmese and Raskin 2000; Pero et al. 2006; Sohlberg and Mateer 1987), although a few studies have incorporated between-group designs with random assignment (e.g., López-Luengo and Vázquez 2003; Sohlberg

between-group designs with random assignment (e.g., López-Luengo and Vázquez 2003; Sohlberg et al. 2000). In general, researchers have found some support for improvement on sustained, selective, and divided attention tasks, as well as reading comprehension, in certain situations (Boman et al. 2004; Coelho 2005; Kurtz et al. 2001; Murray et al. 2006; Palmese and Raskin 2000; Pero et al. 2006; Sohlberg et al. 2000; Sohlberg and Mateer 1987). However, studies have not consistently found evidence

et al. 2000; Sohlberg and Mateer 1987). However, studies have not consistently found evidence of improvement in attention skills resulting from APT (e.g., López-Luengo and Vázquez 2003; Silverstein et al. 2005).

For example, individuals with brain injury who have completed the APT program have shown improvement on the paced auditory serial addition task (PASAT; Gronwall 1977), a measure of sustained attention and information processing speed (Park et al. 1999). However, control subjects who did not receive APT also showed improvement on this task over time (Park et al.). Compared to individuals receiving brain injury education, those who received APT in another study made greater gains on the PASAT

brain injury education, those who received APT in another study made greater gains on the PASAT (Sohlberg et al. 2000). Another task on which individuals with brain injury who have completed APT have shown improvement is the consonant trigrams activity (Park et al. 1999), which involves recalling three consonants heard after counting backward by threes. It is intended to measure memory under conditions of distraction.

### Outcome Measurement  Avariety of outcome measures including attention tasks, questionnaires, and participant interviews have been used in APT efficacy research. However the most commonly used outcome measures appear to be the paced auditory serial addition task (PASAT; Gronwall 1977), consonant trigrams (Peterson and Peterson 1959), Trails B, and variations of the Stroop task (Stroop 1935).

#### Paced Auditory Serial Addition Task  The PASAT measures rate of information processing and was designed to assess the rate and degree of progress for clients recovering from concussion (Gronwall 1977). It is comprised of a randomized presentation of an auditory digit sequence, and the participant is expected to add each new digit to the preceding one (Sohlberg et al. 2000). Subsequent trials are presented at increasingly faster rates. Scores can be calculated as the correct number of

are presented at increasingly faster rates. Scores can be calculated as the correct number of responses at each trial pace or average time per correct response (Gronwall 1977). The PASAT is considered to require two types of attention: sustained attention and the ability to identify and correct errors during the activity (Park et al. 1999). Some have questioned whether improvement on this task following APT is due to the intervention or is an effect of repeated testing (Pero et al. 2006).

#### Consonant Trigrams/Brown-Peterson Task  This task measures memory skills under conditions of distraction (Park et al. 1999). Individuals participating in this task hear three consonants followed by a number. They are then asked to count backward by threes for a predetermined number of seconds (e.g., 3, 9, 18). After the set time has elapsed, the participant is expected to recall the three consonants heard at the beginning of the trial. Delays of varying lengths between the end of the

consonants heard at the beginning of the trial. Delays of varying lengths between the end of the counting backward and the instruction to recall the consonants are also incorporated into the assessment (Park et al.).

#### Trails B  Trails B was originally part of the Army Individual Test Battery and is a task that measures visual scanning, mental flexibility, planning abilities, and working memory (Corrigan and Hinkeldey 1987; Sohlberg et al. 2000). Participants are asked to draw lines connecting consecutively numbered and lettered circles and alternate between the two (e.g., in the order 1-A-2-B-3-C-4-D. . .). Trails B can be scored as number of seconds required to complete the task (Corrigan and Hinkeldey

Trails B can be scored as number of seconds required to complete the task (Corrigan and Hinkeldey 1987).

#### The Stroop Task  The Stroop task measures the interference effects of conflicting stimuli (Stroop 1935). Participants are shown a list of color words and asked to name the colors in which the words are printed (e.g., red, yellow) and ignore the words themselves (e.g., naming “yellow” for the word “red” printed in yellow ink). The task can also be completed by having participants read the list of color words while ignoring the ink color in which they are printed. Many variations of this

list of color words while ignoring the ink color in which they are printed. Many variations of this original task have been developed that utilize different types of conflicting stimuli (MacLeod 1991).

### Qualifications of Treatment Providers  Psychologists, speech-language pathologists, occupational therapists, special education staff, and related professionals with appropriate training in cognitive rehabilitation would generally be considered qualified to implement APT.

### See Also  *   Attention *   Auditory Discrimination *   Auditory Processing *   Executive Function (EF) *   Information Processing Speed *   Memory *   Reaction Time *   Short-Term Memory *   Visual Processing *   Visual Scanning   ### Definition  The first of the three subfunctions necessary for visual-spatial orienting (disengage, shift, and engage); the removal of attention from and/or ocular engagement with a stimulus that enables a shift of attention from one location to another.

### Historical Background  Attention and autism spectrum disorder. Although autism spectrum disorder (ASD) is diagnosed on the basis of impairments in social interaction and communication as well as the presence of repetitive and stereotyped interests and behaviors (APA 2013), differences in attention have been noted as secondary or associated features since the disorder was first described (Asperger 1944; Kanner 1943). For example, in his original account, Asperger (1944) observed that:

We regularly find a disturbance of active attention in autistic children. Here we are not [. . .] talking about the common-or-garden problems of concentration. These are problems that we find in many [children with other developmental disabilities] who are constantly distracted from work by external stimuli [. . .]. Autistic children on the other hand are, from the start, not interested in directing their attention to outside stimuli [. . .]. They follow their own ideas, which are mostly far

their attention to outside stimuli [. . .]. They follow their own ideas, which are mostly far removed from ordinary concerns, and do not like to be distracted from their thoughts.

Likewise, for one of his original 11 cases, Kanner (1943) remarked that, “to get his attention almost requires one to break down a mental barrier between his inner consciousness and the outside world” (p. 218). However, it was not until the 1960s and 1970s that research focused on the attentional differences in individuals with ASD began in earnest with the work of Hutt et al. (1964), Hermelin and O’Connor (1964), as well as Lovaas et al. (1971). Later, pioneering research led by Michael Posner

O’Connor (1964), as well as Lovaas et al. (1971). Later, pioneering research led by Michael Posner (1980) investigating visual-spatial orienting in neurotypical individuals as well as those with cortical and subcortical lesions (Posner et al. 1982) illuminated this basic cognitive process and its associated brain network. Based on this work, Posner et al. (1984) later outlined the subcomponents of visual-spatial orienting: disengaging, shifting, and reengaging attention. Attentional

of visual-spatial orienting: disengaging, shifting, and reengaging attention. Attentional disengagement thus reflects the initial step of the orienting process and is a prerequisite for shifting and then engaging a new object, person, or location within one’s environment. Subsequent research using Posner’s cuing paradigm in ASD provided the first evidence of impaired nonsocial visual-spatial orienting and in particular showed deficits in disengaging attention (Casey et al. 1993; Townsend et al.

and in particular showed deficits in disengaging attention (Casey et al. 1993; Townsend et al. 1996; Wainwright-Sharp and Bryson 1993).

### Current Knowledge  How do we measure disengagement? In addition to the Posner cuing paradigm, attentional disengagement in ASD has primarily been measured using gap-overlap tasks, which examine differences in the latency of eye movements to peripheral targets appearing with, and without, a central stimulus (Saslow 1967). The time required to execute saccadic eye movements (also referred to as saccadic reaction time; SRT) is reduced when a fixated central stimulus is removed prior to (i.e.,

saccadic reaction time; SRT) is reduced when a fixated central stimulus is removed prior to (i.e., gap condition) or simultaneously with (i.e., baseline or step condition) the onset of a peripheral target compared to when the central stimulus remains on screen when the peripheral target appears (i.e., overlap condition). Attentional disengagement, as measured by the gap effect (i.e., overlap SRT – gap SRT), is associated with both attentional and oculomotor components, and arises from two

SRT – gap SRT), is associated with both attentional and oculomotor components, and arises from two distinct sources: (1) a generalized alerting effect as a consequence of the fixation offset, which cues participants about the impending peripheral target and (2) the release of ocular inhibition due to (a) removal of the foveal stimulus and (b) top-down preparation of a saccade (e.g., Kingstone and Klein 1993). Disengagement abilities have been measured using modified gap-overlap paradigms across

Klein 1993). Disengagement abilities have been measured using modified gap-overlap paradigms across the lifespan from infants at risk for ASD (because they have an older sibling diagnosed with the disorder) to adults diagnosed with ASD (see Sacrey et al. 2014, for review).

Attentional disengagement in ASD. Results of studies employing gap-overlap paradigms in ASD are mixed with evidence of equivalent (e.g., Fischer et al. 2016; Schmitt et al. 2014; Zalla et al. 2018), slower (Elison et al. 2013; Elsabbagh et al. 2013; Kawakubo et al. 2007; Kleberg et al. 2017; Landry and Bryson 2004; Sabatos-DeVito et al. 2016), and faster (van der Geest et al. 2001) disengagement. Evidence of impaired disengagement in ASD has received the most support from studies of high-risk

Evidence of impaired disengagement in ASD has received the most support from studies of high-risk infant siblings of children with ASD and has now been replicated by three separate research groups using unique cohorts of infants (Bryson et al. 2018; Elison et al. 2013; Elsabbagh et al. 2013). This deficit in attentional disengagement emerges around the end of the first year of life and has been shown to persist in children (Kleberg et al. 2017; Landry and Bryson 2004; Sabatos-DeVito et al. 2016)

to persist in children (Kleberg et al. 2017; Landry and Bryson 2004; Sabatos-DeVito et al. 2016) and adults (Kawakubo et al. 2007). Further, while these studies examining attentional disengagement in ASD have almost exclusively used visual stimuli, Keehn et al. (2019) recently showed reduced disengagement efficiency in children with ASD in the auditory domain, suggesting that disengagement impairments in ASD are not specific to the visual modality. Interestingly, this impairment in attentional

in ASD are not specific to the visual modality. Interestingly, this impairment in attentional disengagement is essentially in accord with the early anecdotal accounts by Kanner (1943) and Asperger (1944). That is, difficulties disengaging attention may manifest themselves in becoming “stuck” and subsequently failing to “direct their attention to outside stimuli.” However, as referenced above, not all investigations have reported impairments in attentional disengagement in ASD. Inconsistent

not all investigations have reported impairments in attentional disengagement in ASD. Inconsistent findings may arise from a variety of sources including the heterogeneous nature of ASD, the ages investigated, and differences in task design. Regarding the latter point, Keehn et al. (2019) noted two methodological factors that may contribute to the presence or absence of disengagement differences in ASD: (1) the type of fixation stimulus (e.g., dynamic or static images) and (2) predictability in

in ASD: (1) the type of fixation stimulus (e.g., dynamic or static images) and (2) predictability in the sequence of stimuli. For example, disengagement impairments are more commonly reported in studies of infants and young children, which primarily employ dynamic stimuli to maintain engagement of these younger participants, whereas studies of older children, adolescents, and adults with ASD tend to use more basic stimuli (e.g., fixation cross, LEDs). Second, at least two key aspects of

ASD tend to use more basic stimuli (e.g., fixation cross, LEDs). Second, at least two key aspects of gap-overlap tasks can be varied to decrease/increase the predictability of the target onset: (1) whether the central stimulus has a fixed or a variable duration and (2) whether trial types are blocked or randomized. In both cases, studies with more predicable stimulus sequences – central stimulus present for fixed duration and blocked trial type (e.g., all overlap trials presented together) –

present for fixed duration and blocked trial type (e.g., all overlap trials presented together) – commonly report no group differences in disengagement, whereas evidence of impaired disengagement is more consistently found with unpredictable tasks. Furthermore, gap trials provide a predictable sequence of events: (1) fixation cross appears, (2) fixation cross is removed (fixed duration; e.g., 200 ms), and (3) peripheral target onset. Thus, disappearance of the central fixation in gap trials,

200 ms), and (3) peripheral target onset. Thus, disappearance of the central fixation in gap trials, regardless of study paradigm, always provides a fixed cue associated with the appearance of the target. Group differences in SRT are almost never present in the gap condition; rather, significantly larger gap effect scores in ASD (which are indicative of slower, less efficient disengagement) are the result of longer latencies to shift in overlap trials.

Neural substrates of attentional disengagement. The network of brain regions responsible for orienting attention include the superior parietal lobes, intraparietal sulci, temporal-parietal junction (TPJ), and the frontal eye fields (FEF), as well as the thalamus and superior colliculus (SC) (Corbetta et al. 2008; Petersen and Posner 2012). In particular, the right TPJ may be a critical hub connecting both cortical (i.e., FEF) and subcortical (i.e., SC) brain regions (Bogadhi et al. 2019) and is

both cortical (i.e., FEF) and subcortical (i.e., SC) brain regions (Bogadhi et al. 2019) and is thought to play a key role in disengaging and reorienting attention. Bryson et al. (1990) previously hypothesized that ASD could be characterized as a developmental spatial neglect syndrome (with acquired spatial neglect in adults generally associated with posterior right hemisphere brain lesions). More recently, these authors have shown asymmetrical disengagement deficits in high-risk infants. That

recently, these authors have shown asymmetrical disengagement deficits in high-risk infants. That is, consistent with their prediction of neglect-like patterns of behavior, infants later diagnosed with ASD showed atypically slowed left-directed SRT when the fixation stimulus remained on screen (i.e., overlap trials). This theory and associated empirical results are consistent with electrophysiological (e.g., Orekhova et al. 2009) and neuroimaging findings (e.g., Keehn et al. 2016) of atypical

(e.g., Orekhova et al. 2009) and neuroimaging findings (e.g., Keehn et al. 2016) of atypical right hemisphere activation in individuals with ASD. However, the particular neural mechanism(s) underlying disengagement deficits in ASD remains unknown.

Clinical significance. Early adaptive allocation of attention to one’s environment requires efficient attentional disengagement and shifting. Failure to respond to a caregiver’s name call or touch or the appearance of a novel object may result in fewer learning opportunities and affect the development of higher-level cognitive and social communication abilities. High-risk infants later diagnosed with ASD exhibit impairments in attentional disengagement compared both high- and low-risk infants

with ASD exhibit impairments in attentional disengagement compared both high- and low-risk infants that do not develop ASD. The presence of these early deficits in attentional disengagement has led some authors to hypothesize that they may be one of many factors that contribute to the emergence of the heterogeneous ASD phenotype (Keehn et al. 2013). Findings from prior research has demonstrated that disengagement efficiency in ASD is associated joint attention abilities (Schietecatte et al.

that disengagement efficiency in ASD is associated joint attention abilities (Schietecatte et al. 2011), recognition of spoken words (Venker 2017), and emotional distress (Bryson et al. 2018). For example, if infants and toddlers are unable to disengage and shift their attention during early dyadic interactions, then they may not follow a caregiver’s point (i.e., respond to joint attention bid) or direct their caregiver’s attention to a new item in their environment (i.e., to initiate joint

or direct their caregiver’s attention to a new item in their environment (i.e., to initiate joint attention). Thus, basic nonsocial attentional processes, such as attentional disengagement, may play a role in the development of core sociocommunicative impairments in ASD. These subsequent impairments (e.g., with joint attention) may have downstream consequences with word learning and language development and thus may alter developmental trajectories across a variety of domains.

### Future Directions  Identifying underlying mechanisms of impaired disengagement. Although strong evidence now exists for slower attentional disengagement in ASD, the mechanisms underlying these differences remain unclear. Elucidating the neurofunctional underpinnings associated with early disengagement impairments in ASD is a necessary next step to understand why this deficit emerges, how it may be used to accurately identify infants at risk, and how to more effectively target this skill in

be used to accurately identify infants at risk, and how to more effectively target this skill in early intervention.

Leveraging attentional disengagement for early diagnosis and intervention. If disengagement impairments are present early (within first year of life) and play a critical role in the development of ASD, then (1) disengagement deficits may be used as an early biobehavioral marker to identify infants at risk for ASD and (2) the development of attention-targeted early interventions may augment early disengagement skills and improve outcomes in children with ASD. Eye-tracking biomarkers for ASD risk

skills and improve outcomes in children with ASD. Eye-tracking biomarkers for ASD risk that focus on preference for social compared to nonsocial stimuli have shown excellent specificity but poor sensitivity (Pierce et al. 2016). Similar research examining the utility of nonsocial attentional disengagement metrics for classifying ASD risk has not yet been published. Such research – especially in community-based high-risk samples – will assist the field in identifying whether attentional

in community-based high-risk samples – will assist the field in identifying whether attentional disengagement may be used a biobehavioral marker for ASD risk. Further, research examining the role of atypical attentional disengagement on the development of ASD symptoms will advance our understanding regarding the utility of early attention-targeted interventions. For example, if early disengagement difficulties result in delayed or impaired joint attention in ASD, then targeting these early

difficulties result in delayed or impaired joint attention in ASD, then targeting these early attention skills may facilitate the acquisition of this pivotal skill (Forssman and Wass 2018) and potentially result in improved outcomes for children with ASD.

### See Also  *   Attention *   Joint Attention *   Selective Attention *   Orienting Response   Attribution is a concept in psychology referring to people’s tendency to attribute traits and causes to help explain what they observe. First- and second-order attributions refer more specifically to the attribution of mental states to self or others to explain and predict observable behavior (see ▶“Theory of Mind”). Attribution of mental states, such as beliefs and desires, has been widely studied

of Mind”). Attribution of mental states, such as beliefs and desires, has been widely studied in false belief paradigms (Frith and Frith 2010). First-order mental state attribution tasks require the participant to represent another person’s thoughts about the world, e.g., Sally thinks the ball is in the basket. Second-order tasks require representation of one person’s belief about another person’s mental state, e.g., Sally thinks Ann knows the ball is in the box. An everyday life example of

mental state, e.g., Sally thinks Ann knows the ball is in the box. An everyday life example of attribution of mental states would be when we understand whether someone is telling a joke or telling a lie: we attribute to the liar, but not to the joker, the intension to make us believe what he or she says. Several tests exist for assessing the ability to attribute mental states (e.g., Happé 1994; White et al. 2009).

A large body of research has demonstrated that most children and many adults with ASD find it difficult to make mental state attributions, especially attributing to another person a state of knowledge that is different from their own or from reality (Baron-Cohen et al. 2000). This may underlie a range of social and communicative symptoms in ASD, such as overliteral language use/understanding, difficulty adapting conversation to listeners’ interests/knowledge, and difficulty understanding deception.

adapting conversation to listeners’ interests/knowledge, and difficulty understanding deception. An interesting question in recent research (e.g., Williams and Happé 2009) is whether some people with ASD may have difficulty attributing mental states to self, with implications for self-awareness and the ability to reflect upon one’s own thoughts and feelings. Attribution of mental states has become a key task for use during functional neuroimaging investigations of brain differences in ASD. A range

key task for use during functional neuroimaging investigations of brain differences in ASD. A range of different tasks suggest key regions including the medial prefrontal cortex are less activated in people with ASD compared to controls when attributing thoughts (in response to, e.g., animated shapes, story vignettes; Frith and Frith 2010).

Schizophrenia in adults and pediatric patients (age 13–17 years); Acute manic or mixed episodes of bipolar I disorder in adults and pediatric patients (age 10–17 years), alone or as an adjunct to lithium or valproate; Major depressive disorder in adults (adjunctive treatment); Agitation associated with schizophrenia or manic or mixed episodes of bipolar I disorder (adults).

#### Clozapine (Clozaril)  Acute schizophrenia; Acute schizoaffective disorder; Treatment-refractory schizophrenia; Maintenance therapy in schizophrenia; Manic episodes of bipolar disorder; Depression with psychotic features.

#### Olanzapine (Zyprexa)  Schizophrenia in adults and pediatric patients (age 13–17 years); Acute manic or mixed episodes of bipolar I disorder in adults and pediatric patients (age 13–17 years), alone or as an adjunct to lithium or valproate; Acute agitation in schizophrenia and mania in bipolar I disorder; in combination with fluoxetine for depressive episodes associated with bipolar I disorder in adults; in combination with fluoxetine for treatment-resistant depression (adults).

#### Olanzapine and Fluoxetine Hydrochloride (Symbyax)  Acute depressive episodes of bipolar I disorder in adults; Treatment-resistant depression in adults.
 #### Paliperidone (Invega)  Schizophrenia; Acute treatment of schizoaffective disorder, alone or as an adjunct to mood stabilizers and/or antidepressants.

#### Quetiapine (Seroquel)  Schizophrenia, including global symptoms, positive symptoms, negative symptoms, cognition, and aggression; Bipolar disorder (adults); Major depressive disorder in adults (adjunctive treatment).

#### Risperidone (Risperdal)  Schizophrenia in adults and pediatric patients (age 13–17 years); Acute manic or mixed episodes of bipolar I disorder in adults, alone or as an adjunct to lithium or valproate; Acute manic or mixed episodes of bipolar I disorder in pediatric patients (age 10–17 years); Irritability associated with autistic disorder in pediatric patients (age 5–16 years).

#### Ziprasidone Hydrochloride (Geodon) and Ziprasidone Mesylate (Geodon)  Schizophrenia in adults; Acute manic or mixed episodes of bipolar I disorder in adults, alone or as an adjunct to lithium or valproate; Acute agitation of schizophrenia in adults

### Mechanisms of Action  When considering mechanisms of action of antipsychotics, it is important to note that the pathophysiologies of psychiatric conditions treated by these drugs (i.e., schizophrenia, bipolar disorder, and autism) are unknown; therefore, the precise mechanisms of action of the atypical antipsychotics are unknown.

#### Aripiprazole  Aripiprazole is a dopamine type 2 (D2) receptor partial agonist, not a full antagonist like the other atypical antipsychotics. This drug acts as a D2 receptor antagonist when coadministered with a dopamine (DA) agonist but acts as a D2 receptor agonist when administered without another DA agonist. Aripiprazole acts as an antagonist in overactive DA pathways and an agonist in underactive DA pathways. This drug’s antagonist activity at serotonin type 2A (5-HT2A) receptors may

DA pathways. This drug’s antagonist activity at serotonin type 2A (5-HT2A) receptors may cause reductions in extrapyramidal symptoms (EPS) and improve the negative symptoms of schizophrenia, and its partial agonist activity at serotonin type 1A (5-HT1A) may cause improvement in the negative and cognitive symptoms of schizophrenia, depression, and anxiety.

#### Clozapine  Clozapine exhibits low affinity for and quick dissociation from dopamine type 2 (D2) receptors and high affinity for the serotonin type 2A (5-HT2A) and serotonin type 1C (5-HT1C) receptors, adrenergic receptors, cholinergic receptors, and dopamine type 4 (D4) receptors, mainly in the extrastriatal cortex as compared to the striatal cortex. This drug also increases the release of dopamine (DA) in the prefrontal cortex. This effect of the drug may alleviate the negative symptoms

dopamine (DA) in the prefrontal cortex. This effect of the drug may alleviate the negative symptoms and cognitive deficits of schizophrenia since these two aspects of the disorder may result from dopaminergic hypoactivity in the prefrontal cortex.

#### Olanzapine  Olanzapine has high relative serotonin type 2A (5-HT2A) receptor blocking activity compared to that of dopaminergic (DA) receptors. This drug increases expression of c-fos in the caudate nucleus and increases serum glutamate levels. Also, olanzapine increases brain glutamate levels in patients who exhibit improvement in the negative symptoms of schizophrenia.

#### Paliperidone  Paliperidone is a dopamine type 2 (D2), serotonin type 2A (5-HT2A), α1- and α2-adrenergic, and histaminergic 1 (H1) receptor antagonist. This drug is expected to have a mechanism very similar to that of risperidone since it is the major active metabolite of that drug, although patients have been reported to have responded positively to paliperidone after failing to respond to an adequate trial of risperidone.

#### Quetiapine  Quetiapine exhibits a high relative blockade of serotonin type 2A (5-HT2A), serotonin type 2B (5-HT2B), and serotonin type 2C (5-HT2C) receptors compared to that of dopamine (DA) receptors. This drug exhibits a greater degree of binding in the extrastriatal cortex than in the striatal cortex. Quetiapine has partial agonist activity at 5-HT2A which causes an increased DA level in the mesocortical DA pathway in individuals in which this pathway is hypoactive, thereby causing

in the mesocortical DA pathway in individuals in which this pathway is hypoactive, thereby causing improvement in the negative and cognitive symptoms of schizophrenia. Also, this compound exhibits brief, high occupancy of dopamine type 2 (D2) receptors for 2–3 h after dose administration in patients who exhibit improvement in psychosis, extrapyramidal symptoms (EPS), and prolactin. Imaging studies show that this drug has means of 74% 5-HT2A receptor binding and 30% D2 receptor binding for 450

show that this drug has means of 74% 5-HT2A receptor binding and 30% D2 receptor binding for 450 mg/day dosing and means of 76% 5-HT2A receptor binding and 41% D2 receptor binding for 750 mg/day dosing.

#### Risperidone  Risperidone acts as an antagonist at the serotonin type 2A (5-HT2A), dopamine type 2 (D2), α1- and α2-adrenergic, and histaminergic 1 (H1) receptors. Selective 5-HT2A antagonists block amphetamine- and phencyclidine-induced locomotor activity and thereby may improve symptoms of psychosis. Also, the dizocilpine-induced disruption of prepulse inhibition of 5-HT2A antagonists may improve sensory gating deficits in schizophrenia which may be caused by glutamatergic dysregulation.

improve sensory gating deficits in schizophrenia which may be caused by glutamatergic dysregulation. The α-adrenergic antagonist activity may cause an increase in dopamine (DA) levels in the medial prefrontal cortex which may improve negative symptoms and cognition in schizophrenia. Dopaminergic hypoactivity in the prefrontal cortex is a potential cause of negative symptoms and cognitive deficits in schizophrenia. The α-adrenergic antagonist activity of this drug also may reduce the risk for the

schizophrenia. The α-adrenergic antagonist activity of this drug also may reduce the risk for the development of extrapyramidal symptoms (EPS) and improve cognition in individuals with frontal dementias. When taken with haloperidol, the selective serotonin type 2 (5-HT2) antagonism reduces neuroleptic-induced parkinsonism and akathisia by increasing DA metabolism in the striatum and preventing an increase in D2 receptor density which causes a decrease in the effects of D2 receptor blockade and

increase in D2 receptor density which causes a decrease in the effects of D2 receptor blockade and DA supersensitivity.

#### Ziprasidone  The antipsychotic effects of ziprasidone may be due to the affinity of this drug for dopamine type 2 (D2) receptors in the striatum and its strong antagonism for serotonin type 2A (5-HT2A) receptors. The 5-HT2A receptor antagonism of this drug and its strong serotonin type 1A (5-HT1A) receptor agonism may improve the negative and cognitive symptoms of schizophrenia by facilitating the release of dopamine (DA) in the prefrontal cortex.

### Specific Compounds and Properties  The specific compounds currently marketed in the United States that act as atypical antipsychotics are aripiprazole, clozapine, olanzapine, paliperidone, risperidone, ziprasidone, and quetiapine. The unique chemical structure of each atypical antipsychotic accounts for its binding activity as detailed in the “Mechanisms of Action” section of this entry. The chemical structures of these compounds are pictured in Figs. 1, 2, 3, 4, 5, 6, and 7 (Note: image

chemical structures of these compounds are pictured in Figs. 1, 2, 3, 4, 5, 6, and 7 (Note: image figures are not provided in the input, so they cannot be reproduced).

### Clinical Use (Including Side Effects)  #### Aripiprazole  Aripiprazole is used in autistic disorder to improve symptoms of aggression, irritability, and self-injurious behavior. Doses used in studies range from 2.5 to 15 milligrams per day (mg/day). Side effects of aripiprazole include nausea, weight gain, akathisia, headache, insomnia, agitation, anxiety, and mild transient somnolence.

#### Clozapine  Clozapine is used in autism spectrum disorders (ASDs) to improve symptoms of aggression. Doses of 276 mg/day in an adolescent and 283.33 mg/day in children have been used to treat ASDs. Side effects of clozapine include a very high risk of sedation; a high risk of anticholinergic effects, sialorrhea, orthostasis, and weight gain; a moderate risk of seizures and hematologic effects; a low risk of increased liver enzyme levels; and a very low risk of extrapyramidal symptoms (EPS)

a low risk of increased liver enzyme levels; and a very low risk of extrapyramidal symptoms (EPS) and neuroleptic malignant syndrome (NMS).

#### Olanzapine  Olanzapine is used in autism spectrum disorders for global improvement of severe behavioral symptoms, overall symptoms of autism, motor restlessness/hyperactivity, social relatedness, affectual relations, sensory responses, language use, self-injurious behaviors, aggression, irritability, anxiety, and depression. The dose for this drug may be between 5 and 20 mg/day and is used in children, adolescents, and adults. Side effects of olanzapine include sedation and weight gain.

in children, adolescents, and adults. Side effects of olanzapine include sedation and weight gain. Also, this drug has a moderate risk of orthostasis and anticholinergic effects; a low, dose-dependent risk of EPS; a low risk of increased liver enzyme levels; and a very low risk of TD, seizures, and hematologic effects.

#### Paliperidone  Paliperidone has been used in autism spectrum disorders to improve symptoms of irritability, including aggression, self-injurious behaviors, and tantrums. Doses of 6–12 mg/day have been used in adolescents with autism. Side effects of paliperidone include orthostatic hypotension, weight gain, weight loss, and sedation.

#### Quetiapine  Quetiapine is used in autism spectrums disorders (ASDs) to improve symptoms of aggression, hyperactivity, and inattention. Doses used in studies of quetiapine for use in the treatment of ASDs include means of 225 mg/day and 477 mg/day in children and adolescents; a mean of 292 mg/day in adolescents; and a mean of 249 mg/day in a group of children, adolescents, and adults. Side effects of quetiapine include agitation, sedation, weight gain, aggression, and sialorrhea. Also,

effects of quetiapine include agitation, sedation, weight gain, aggression, and sialorrhea. Also, this drug has a low risk of anticholinergic effects, orthostasis, and increased liver enzyme levels and a very low risk of EPS, NMS, seizures, and hematologic effects.

#### Risperidone  Risperidone is used in autistic disorder to improve symptoms of aggression, irritability, repetitive behavior and language, hyperactivity, social withdrawal, nonverbal communication, and social responsiveness. An effective dose for children with pervasive developmental disorder (PDD) may range from 1 to 1.2 mg/day, whereas an effective dose for children with autism may be 1.8 mg/day. An effective dose for adults with autism may be 2.9 mg/day. Side effects of risperidone

1.8 mg/day. An effective dose for adults with autism may be 2.9 mg/day. Side effects of risperidone include sedation, increased prolactin, weight gain, and hypersalivation. Also, this drug has a high risk for orthostasis; a moderate, dose-dependent risk of EPS; and a very low risk of tardive dyskinesia (TD), NMS, anticholinergic effects, seizures, hematologic effects, and elevated liver enzyme levels.

#### Ziprasidone  Ziprasidone is used in autism spectrum disorders to improve symptoms of aggression, irritability, and agitation. A dose used in studies of ziprasidone for use in the treatment of ASDs includes a mean of 59 mg/day in children and adolescents. Side effects of ziprasidone include sedation and mild weight gain. Also, this drug has a low risk of orthostasis and increased liver enzyme levels and a very low risk of EPS, anticholinergic effects, seizures, and hematologic effects.

## Atypical Autism  ### Short Description or Definition  Atypical autism is often described as a subthreshold diagnosis, presenting with some symptoms of autism but insufficient to meet criteria for a diagnosis of childhood autism (or autistic disorder). Alternatively, atypical autism can be diagnosed when there is a late onset of symptomatology. Atypical autism (as defined by ICD-10) is seen as being equivalent to the DSM-IV-TR diagnostic category of pervasive developmental disorder not

as being equivalent to the DSM-IV-TR diagnostic category of pervasive developmental disorder not otherwise specified (PDD NOS). DSM-5 does not have a separate diagnostic category for PDD NOS.

Like PDD NOS, atypical autism is poorly defined, resulting in a research literature that can be difficult to interpret and conclusions difficult to reach. Atypical autism, as defined by the ICD, lacks operationalized diagnostic criteria, resulting in inconsistencies and variability in the way in which the diagnosis is applied. Although it now appears to be more common than autistic disorder, in general it remains poorly understood. This is likely due, in no small part, to the lack of a clear

general it remains poorly understood. This is likely due, in no small part, to the lack of a clear definition. Although it is often assumed that findings relating to autism apply to atypical autism, the lack of operationalized diagnostic criteria has undoubtedly hampered specific research into this diagnostic category and contributed to inconsistent findings across studies. Studies often fail to describe how they operationalized or defined their samples of atypical autism or PDD NOS. The ICD-10

describe how they operationalized or defined their samples of atypical autism or PDD NOS. The ICD-10 provides specifiers to further define the diagnosis of atypical autism (see section “Categorization”); however, studies generally do not use these specifiers. Difficulties therefore remain in interpreting and comparing findings across studies. The broadening of the PDD NOS category in DSM-IV (Volkmar et al. 2000) has also contributed to difficulties in interpretability of results across studies,

et al. 2000) has also contributed to difficulties in interpretability of results across studies, although with DSM-IV-TR (American Psychiatric Association 2000) this was remedied. Further definition of atypical autism or PDD NOS in research (see, e.g., Mandy et al. (2011)) would assist with furthering knowledge in this area. This entry will focus on research studies involving individuals with atypical autism. Where necessary, this is supplemented with research findings from samples with PDD NOS.

### Categorization  The category of pervasive developmental disorder (PDD) was introduced in DSM-III (American Psychiatric Association 1980) and included the subthreshold diagnosis of atypical PDD, which subsequently became pervasive developmental not otherwise specified (PDD NOS) in DSM-III-R (American Psychiatric Association 1987). Reflecting thinking at the time, ICD-9 categorized autism (299.0 Infantile Autism) under the category of childhood psychoses and included a code for other specified

Infantile Autism) under the category of childhood psychoses and included a code for other specified early childhood psychoses, including atypical childhood psychosis (299.8) (World Health Organisation 1978). With the revision of these classification systems to the DSM-IV (American Psychiatric Association 2000) and ICD-10 (World Health Organisation 1992), the systems shared a common approach to coding and were seen as conceptually the same (Volkmar 1998).

The ICD-10 (World Health Organisation 1992) provides diagnostic criteria for atypical autism (F84.1) under the category of pervasive developmental disorders. The diagnosis is for cases where age of onset is after the age of three (criteria the same for childhood autism except for age of onset), or all three sets of criteria for childhood autism are not met (subthreshold). Criteria in the domains of abnormalities in reciprocal social interaction, or communication, or restricted, repetitive, and

of abnormalities in reciprocal social interaction, or communication, or restricted, repetitive, and stereotyped patterns of behavior, interests, and activities are the same as for childhood autism except that it is not necessary to meet the criteria for number of areas of abnormality. Specifiers can then be used to indicate atypicality in age of onset (F84.10), atypicality in symptomatology (F84.11), or atypicality in both age of onset and symptomatology (F84.12). The DSM-IV (American

(F84.11), or atypicality in both age of onset and symptomatology (F84.12). The DSM-IV (American Psychiatric Association 2000) defines PDD NOS as including atypical autism. The ICD-10 also has two additional diagnoses, namely, other pervasive developmental disorder (F84.8, with no diagnostic criteria specified) and pervasive developmental disorder, unspecified (F84.9). The latter disorder is defined as a residual category for cases where there is a lack of information or contradictory findings, but

as a residual category for cases where there is a lack of information or contradictory findings, but where symptomatology fits the general description for a pervasive developmental disorder. The ICD-10 diagnoses of atypical autism, other pervasive developmental disorder, and pervasive developmental disorder, unspecified are considered to be broadly equivalent to the DSM-IV-TR (American Psychiatric Association 2000) diagnosis of PDD NOS.

In the current DSM (DSM-5; American Psychiatric Association 2013), the category of PDD NOS has been subsumed under autistic spectrum disorder, with the instruction to give the DSM-5 diagnosis of autism spectrum disorder to those with a well-established diagnosis of PDD NOS. Concerns have been raised regarding whether children and adolescents with DSM-IV diagnoses of PDD NOS or ICD-10 diagnoses of atypical autism would meet the DSM-5 diagnostic criteria for autism spectrum disorder. Using draft

atypical autism would meet the DSM-5 diagnostic criteria for autism spectrum disorder. Using draft criteria, a number of studies reported concerningly low rates (3–28.3%) of cases of PDD NOS/atypical autism meeting the DSM-5 criteria for autism spectrum disorder (Barton et al. 2013; Mandy et al. 2011; Mayes et al. 2013; McPartland et al. 2012). Kim et al. (2014) reported a higher rate (63%) and Huerta and colleagues found that the DSM-5 diagnostic criteria resulted in improved specificity

and Huerta and colleagues found that the DSM-5 diagnostic criteria resulted in improved specificity compared to the DSM-IV criteria for PDD NOS (Huerta et al. 2012). It has been speculated that children without repetitive, restricted, or stereotyped behaviors previously diagnosed with PDD NOS may meet the diagnostic criteria for the new DSM-5 Social Communication Disorder category (Ozonoff 2012; Skuse 2012). Prospective research studies using the DSM-5 diagnostic criteria are needed to explore

Skuse 2012). Prospective research studies using the DSM-5 diagnostic criteria are needed to explore these issues. Draft guidelines for ICD-11 (due for release in 2018), mirror the DSM-5, subsuming atypical autism into the single diagnostic category of autism spectrum disorder (WHO, GCP Network 2017).

### Epidemiology  Atypical autism is rarely the focus of prevalence studies, and differing labels and combining of groups other than autistic disorder can make the extraction and interpretation of prevalence figures difficult. A number of population and birth cohort studies have included figures on the prevalence of atypical autism. The UK-based studies in children have reported differing prevalence figures of 10.5/10,000 (Lingam et al. 2003), 10.9/10,000 (Williams et al. 2008), and 27/10,000

figures of 10.5/10,000 (Lingam et al. 2003), 10.9/10,000 (Williams et al. 2008), and 27/10,000 (Baird et al. 2000), while a birth cohort study (6-year-olds) in Stockholm reported a prevalence of 22/10,000 (Fernell and Gillberg 2010). A study in the Faroe Islands (considered a genetic isolate) reported a population prevalence of atypical autism of 0.12%, while acknowledging that this is possibly an underestimate particularly in terms of higher functioning children (Ellefsen et al. 2007). A Danish

underestimate particularly in terms of higher functioning children (Ellefsen et al. 2007). A Danish population study reported separate prevalence rates for atypical autism (3.3/10,000) and PDD NOS (14.6/10,000), which when taken together are similar to those rates reported by Fernell and Gillberg (2010) and Baird et al. (2000). A South Korean study provided a prevalence estimate of 1% for PDD NOS (Kim et al. 2011). Using data from the national Danish register, reported rates of Gender ratios

(Kim et al. 2011). Using data from the national Danish register, reported rates of Gender ratios have been reported by a very small number of studies, with a higher proportion of males with autistic disorder compared to atypical autism, 6.5:1 compared to 3.8:1 in Stockholm (Fernell and Gillberg 2010), and no reported gender differences between PDD NOS (85.3% male) and autistic disorder (85.9% male) in a birth cohort of 4–6-year-olds in Stafford in the UK (Chakrabarti and Fombonne 2005).

A series of review studies by Fombonne, most recently in 2009, reviewed 43 prevalence surveys, 17 of which provided separate estimates of the prevalence of atypical autistic syndromes (PDD NOS and atypical autism) (Fombonne 2009). Fourteen of these studies reported a higher prevalence of atypical autism syndromes compared to autistic disorder, 37.1/10,000 and 20.6/10,000 respectively. Like the prevalence of autism, the reported prevalence of atypical autism has increased over time. Similarly,

of autism, the reported prevalence of atypical autism has increased over time. Similarly, this increase is typically discussed in relation to changes in diagnostic criteria, increased awareness, diagnostic substitution, changes in special education policies, and increases in the availability of services. What is, however, clear from these studies is that there is a significantly large population of children with atypical autism who have treatment needs similar to those of children with autism.

### Natural History, Prognostic Factors, and Outcomes  A small number of studies have investigated the early signs and symptoms in children later diagnosed with atypical autism, with mixed results. One study looked at first symptoms and diagnosis in children with atypical autism, comparing the parent-reported onset of symptomatology to that of children diagnosed with childhood autism (Oslejskova et al. 2007). Significant group differences were found in age of first symptoms, with parents of

et al. 2007). Significant group differences were found in age of first symptoms, with parents of children with atypical autism reporting first symptoms at an average of 36.7 months (compared to 23.5 months for children with childhood autism). There were however no significant group differences in age at diagnosis. In contrast, Walker et al. reported no difference between autism and PDD NOS in terms of age at which abnormalities were first identified by parents (2004). Two epidemiological studies

of age at which abnormalities were first identified by parents (2004). Two epidemiological studies found that atypical autism was diagnosed later than childhood autism, with atypical autism generally diagnosed at 5–6 years of age and childhood autism at 3–4 years (Fernell and Gillberg 2010; Lingam et al. 2003).

Research has demonstrated that outcome in autism and other pervasive developmental disorders is associated with the acquisition of expressive language skills by the age of 5–6 years, cognitive ability, and early social-communicative skills (Gillberg and Steffenburg 1987; Kobayashi et al. 1992; Mundy et al. 1990; Nordin and Gillberg 1998; Sigman and Ruskin 1999). Longitudinal studies have reported that initial diagnosis (i.e., atypical autism or PDD NOS compared to autistic disorder) is not

that initial diagnosis (i.e., atypical autism or PDD NOS compared to autistic disorder) is not related to outcomes (Baghdadli et al. 2007; Turner et al. 2006) and therefore has limited use in predicting developmental outcomes. However, Moulton et al. (2016) reported that a diagnosis of PDD NOS at age 2 was associated with better outcomes at age 4 relative to those children with a diagnosis of autistic disorder, likely due to lower rates of autism symptomatology, particularly restricted and

autistic disorder, likely due to lower rates of autism symptomatology, particularly restricted and repetitive behaviors.

### Clinical Expression and Pathophysiology  The reliability and stability of the diagnoses of atypical autism and PDD NOS has been questioned. In a study of subtypes of pervasive developmental disorders in children, Mahoney et al. (1998) reported interrater agreement for diagnoses of Asperger’s disorder, autism, and atypical autism across three raters. Kappa values revealed good agreement for the diagnosis of autism (0.55), Asperger’s disorder (0.56), and non-PDD (0.67), but poor agreement in

diagnosis of autism (0.55), Asperger’s disorder (0.56), and non-PDD (0.67), but poor agreement in the case of atypical autism (0.18). Consistent with the results of studies in children with atypical autism, research in toddlers with autism and PDD NOS has reported good agreement between clinicians on the diagnosis of autism, but low rates of agreement for PDD NOS (Chawarska et al. 2007; Stone et al. 1999).

In relation to diagnostic stability, research has focused on individuals with PDD NOS. While diagnoses of autistic disorder have been shown to be relatively stable in toddlers, the same is not true of PDD NOS (Chawarska et al. 2007; Stone et al. 1999; Turner et al. 2006; van Daalen et al. 2009). A meta-analysis of the diagnostic stability of PDD NOS reviewed eight studies, reporting higher rates of stability for a diagnosis of autistic disorder compared to PDD NOS (Rondeau et al. 2010). It was

of stability for a diagnosis of autistic disorder compared to PDD NOS (Rondeau et al. 2010). It was concluded that a diagnosis of PDD NOS prior to 36 months was unstable (35% stability) over time, highlighting the need for reassessment. It has been suggested that low diagnostic stability may be attributable to the later emergence of stereotyped and repetitive behaviors in young children (Kleinman et al. 2008; Sutera et al. 2007).

The lack of operationalized diagnostic criteria for atypical autism and the variability in which the diagnosis is applied have possibly resulted in a significant amount of heterogeneity in the presentation of individuals; as such, there is as yet no consensus regarding the symptom profile for atypical autism or PDD NOS (Mandy et al. 2011). Two studies have examined symptom profiles in children with atypical autism, focusing on high-functioning children with atypical autism, Asperger’s disorder,

atypical autism, focusing on high-functioning children with atypical autism, Asperger’s disorder, and childhood autism (Kanai et al. 2004; Kurita 1997). In a comparison of children with high-functioning atypical autism and childhood autism, symptom patterns were examined using the Childhood Autism Rating Scale (CARS) (Kurita et al. 1989), rated by clinicians blind to the child’s diagnosis. The children with atypical autism scored significantly lower on the CARS total score. There were no

The children with atypical autism scored significantly lower on the CARS total score. There were no significant group differences on 11 of the 15 CARS items. After controlling for IQ and total CARS score, the children with atypical autism were found to be significantly less impaired on two items of the CARS (relationships with people and general impressions) and were more impaired in anxiety reaction compared to the children with childhood autism. In a comparison of high- functioning atypical

compared to the children with childhood autism. In a comparison of high- functioning atypical autism and Asperger’s disorder, the Asperger’s disorder group was significantly less impaired than the atypical autism group on total CARS score, imitation, visual responsiveness, auditory responsiveness, and nonverbal communication (Kurita 1997). Overall, these findings are consistent with the idea of atypical autism being a subthreshold diagnosis for children with a significant degree of impairment, but

autism being a subthreshold diagnosis for children with a significant degree of impairment, but not to the degree that criteria for childhood autism are met.

Further information on symptom presentation comes from studies with children with a diagnosis of PDD NOS. Consistent with the results of the studies with children with atypical autism, a number have reported generally finding children with PDD NOS to have significantly less impairment in the social, communication, and restricted and repetitive symptom domains compared to children with autistic disorder (Fodstad et al. 2009; Walker et al. 2004). de Bruin et al. (2006) reported that children with

(Fodstad et al. 2009; Walker et al. 2004). de Bruin et al. (2006) reported that children with PDD NOS have similar cognitive profiles as children with autism, although in contrast Walker et al. (2004) found that children with PDD NOS scored better than children with autism on measures of adaptive behavior and nonverbal reasoning and problem-solving skills. An investigation of communication impairments using the Children’s Communication Checklist (Bishop 1998) with children with high-functioning

using the Children’s Communication Checklist (Bishop 1998) with children with high-functioning autism, Asperger’s disorder, and PDD NOS found that while all groups demonstrated significantly more impairment than the typically developing control group, there was little difference across the autism subtypes. In a comprehensive study, Mandy et al. (2011) operationalized the definition of PDD NOS and compared the symptom profiles of children with autistic disorder, Asperger’s disorder, and PDD NOS on

the symptom profiles of children with autistic disorder, Asperger’s disorder, and PDD NOS on independent measures of symptomatology. They found that the overwhelming majority (97%) of children with PDD NOS presented with a symptom profile characterized by significant impairment in social interaction and communication skills without repetitive stereotyped behavior. The remaining children presented with a symptom pattern of significant social impairment and repetitive stereotyped behavior without

with a symptom pattern of significant social impairment and repetitive stereotyped behavior without communication impairment. These results are inconsistent with the view of PDD NOS being a condition with marked heterogeneity. The children with PDD NOS demonstrated significantly less routinized and repetitive behaviors, sensory difficulties, feeding, and visuospatial problems compared to the children with autistic disorder and Asperger’s disorder. With PDD NOS now subsumed under the DSM-5

children with autistic disorder and Asperger’s disorder. With PDD NOS now subsumed under the DSM-5 diagnostic category of autism spectrum disorder (ASD), it may be that individuals presenting with marked impairments in social interaction and communication, without repetitive stereotyped behavior, will not meet the DSM-5 diagnostic criteria for ASD.

High rates of comorbid mental health problems have been reported in atypical autism and PDD NOS.ADanishstudycomparedasampleof89individuals diagnosed as children with atypical autism to a matched control sample from the general population (Mouridsen et al. 2008). Using the Danish Psychiatric Register, they demonstrated that over a 36-year follow-up period, elevated rates of co-occurring psychiatric diagnoses were found in those with atypical autism. The most prevalent of these was schizophrenia

diagnoses were found in those with atypical autism. The most prevalent of these was schizophrenia spectrum disorder. High levels of depression, anxiety, and disruptive behavior disorder have been reported in children with PDD NOS (de Bruin et al. 2007; Pearson et al. 2006), highlighting the importance of considering comorbid mental health problems when conducting diagnostic assessments for atypical autism. It has been reported that while comorbid medical conditions in autism are associated with

autism. It has been reported that while comorbid medical conditions in autism are associated with degree of intellectual disability, they may be more frequent in individuals with atypical autism, although results are mixed across studies (Gillberg and Coleman 1996; Juul-Dam et al. 2001; Rutter et al. 1994). A study by Hara (2007) found no differences between individuals with autism and atypical autism in terms of epilepsy. Biological research on atypical autism and PDD NOS, including

atypical autism in terms of epilepsy. Biological research on atypical autism and PDD NOS, including neuroimaging and genetic studies, has overall found no evidence for differences between these conditions and autistic disorder (Towbin 2005).

### Evaluation and Differential Diagnosis  The assessment process for atypical autism is the same as that recommended for autism and other pervasive developmental disorders. In making a differential diagnosis, whether the criteria are met for a diagnosis of autism or Asperger’s disorder needs to be considered, and degree of intellectual disability needs to be taken into account. Differentiating atypical autism from language disorder is also important. It has been demonstrated that children

atypical autism from language disorder is also important. It has been demonstrated that children with PDD NOS can be differentiated from children with language disorders on the basis of more severe social impairment and a greater need for routines and order (Mayes et al. 1993). Research with children with a significant degree of disruptive behavior has also highlighted the need to consider a diagnosis of atypical autism. In a cohort of primary school-aged children, significant impairments in

of atypical autism. In a cohort of primary school-aged children, significant impairments in social and communication domains were identified in children with significant disruptive behavior, with 28% meeting criteria for a diagnosis of atypical autism (Donno et al. 2010).

Differentiating ADHD and atypical autism in young children can be problematic, with children often first diagnosed with ADHD (Jensen et al. 1997). In a retrospective study, parents of children with PDD NOS or ADHD reported on the symptoms of their children in their first 4 years (Roeyers et al. 1998). Early differences were infrequent, although children with ADHD showed more hyperactive behaviors during the 7–12-month period; this difference was not maintained as the PDD NOS children became

during the 7–12-month period; this difference was not maintained as the PDD NOS children became active with age. As children aged, the difference became more apparent, with children with PDD NOS demonstrating more pronounced social difficulties, withdrawal, anxiety, stereotyped motor behaviors, unusual behaviors, and better scores on cognitive assessments compared to children with ADHD (Jensen et al. 1997; Luteijn et al. 2000; Roeyers et al. 1998; Scheirs and Timmers 2009).

### Treatment  As for autism, treatment for individuals with atypical autism needs to include a range of services and approaches. Behavioral, educational, and developmental approaches to the treatment of communication deficits, social difficulties, and behavior problems have been demonstrated to result in improvements for individuals with autism and are likely to be helpful for individuals with atypical autism. Although there are no drugs that specifically treat autism, medication and medication

autism. Although there are no drugs that specifically treat autism, medication and medication in combination with parent training approaches have been shown to reduce severe behavior problems such as aggression, self-injurious behavior, severe tantrums, and irritability (King 2000; Research Units on Pediatric Psychopharmacology (RUPP) Autism Network 2005a, b, 2009).

Early intervention has been highlighted as a specific area of importance in the treatment of children with autism. Treatment gains have been demonstrated in adaptive functioning, developmental skills, symptom severity, and behavior problems (Dawson et al. 1998; Howlin et al. 2009; Rogers and Vismara 2008). Training parents to implement early intervention programs has also demonstrated gains in communicative behavior, knowledge of autism, parent communication style, parent-child interaction,

communicative behavior, knowledge of autism, parent communication style, parent-child interaction, child behavior problems, and a reduction in parent stress and mental health problems (McConachie and Diggle 2005; Tonge et al. 2006; Whittingham et al. 2009). Improvements can also be made in teaching joint attention, symbolic play, and imitation skills to very young children (Drew et al. 2002; Kasari et al. 2001, 2006). Although important gains have been made in the development of evidence-based

et al. 2001, 2006). Although important gains have been made in the development of evidence-based early interventions, less is known about the role played by mediating or moderating variables in treatment outcomes. Importantly, the impact that early childhood intervention may or may not have on adult outcomes remains unknown. Research on treatment approaches specifically for individuals with atypical autism is lacking; it is assumed that treatment needs and approaches are similar to those for

autism is lacking; it is assumed that treatment needs and approaches are similar to those for individuals with autism. Whether existing evidence-based treatments produce greater effects in individuals with atypical autism remains an area for further research. As is the case for autism, it has been concluded that no single treatment approach or method has been shown to be effective for PDD NOS (Towbin 2005), with treatment approaches needing to take into account the specific strengths,

NOS (Towbin 2005), with treatment approaches needing to take into account the specific strengths, impairments, and needs of each individual.

Children with autism spectrum disorder (ASD) spend more time with screen media than any other leisure activity (Shane and Albert 2008). Evidence indicates that children with ASD spend most of their screen time with nonsocial media (i.e., television, video games) and less time with social media. Compared with other disability groups, among ASD youth, rates of nonsocial media use are higher, and that of social media use are lower (Mazurek 2013b). Similarly, children with ASD report more time

that of social media use are lower (Mazurek 2013b). Similarly, children with ASD report more time with television and video games and less time with social media as compared to neurotypical siblings (Mazurek 2013a). Given that children with ASD report difficulty in developing and maintaining friendships compared to typically developing children (i.e., Rowley et al. 2012), the finding that ASD youth spend more time with nonsocial media is not surprising.

Although existing research demonstrates that children with ASD engage in selective exposure to screen media, less attention has been paid to content preferences among this population. There are only a handful of studies that offer some insight into media content preferences of children with ASD. Regarding television, some studies report that children with ASD tend to prefer animated content (e.g., Martins et al. 2019; Shane and Albert 2008) and that this content is typically created for younger

Martins et al. 2019; Shane and Albert 2008) and that this content is typically created for younger audiences (Martins et al. 2019). Martins et al. (2019) argued that children with ASD select programs with content features made to appeal to developmentally similar children; hence programs for the preschool audience are commonly reported as favorites. These programs are slower-paced and more attuned to specific, individual sensory preferences which may aid in comprehension. Considering that

attuned to specific, individual sensory preferences which may aid in comprehension. Considering that parents identify comprehensibility of content as a key factor in program selection by their children (Martins et al. 2019), then we would expect that these programs are what children with ASD like the most. Comprehensibility is also a key factor in video game content preferences. In their review, Stiller and Mößle (2018) reported that children with ASD prefer role-playing and simulation games.

Stiller and Mößle (2018) reported that children with ASD prefer role-playing and simulation games. Martins et al. (2019) argued that games like Minecraft are popular among this population because children understand the basic functionality for paying and pausing and have full control over the content they view. As mentioned above, research demonstrates that children with ASD spend little to no time on social media platforms (Martins et al. 2019; Mazurek 2013a, b). There are at least three

no time on social media platforms (Martins et al. 2019; Mazurek 2013a, b). There are at least three reasons why children with ASD spend less time with nonsocial media. First, children with ASD are socially isolated (Rowley et al. 2012) and may not have a network of friends to connect with online. Second, some apps like Snapchat or Facebook are not developmentally appropriate, and ASD youth may not understand how such apps work. Finally, parental concerns over the safety of social networks may

understand how such apps work. Finally, parental concerns over the safety of social networks may prevent ASD youth from experimenting with the technology. Parents are worried that their ASD child is incapable of recognizing deceit and therefore might be targets of child predators. Other parents were worried that their child could be made fun or bullied for the content they post (see Martins et al. 2019).

Future research should continue to examine content preferences and how such preferences can be used to teach children both academic and socioemotional skills. For example, future work should test whether education skill could be taught using repeated exposure to preferred components of media (i.e., favorite media characters). Such work is particularly important given that parents report that “autism apps” marketed to the ASD community are either unaffordable or not proven to work (see Martins

apps” marketed to the ASD community are either unaffordable or not proven to work (see Martins et al. 2019). Future research should also examine whether restricting access to online communities or social networking apps does more harm than good as ASD children transition into adolescence.

### See Also  *   Visual Supports    ## Auditory Acuity  ### Synonyms  Hearing sensitivity; Hearing threshold  ### Definition  Auditory acuity describes how sensitive the auditory system is to sound. Auditory acuity is assessed by determining the intensity at which a tone is just audible. Frequencies important for speech perception are typically tested (octave frequencies from 250 to 8,000 Hz). Normal hearing sensitivity is defined as hearing thresholds from –10 to 15 dB HL. Hearing sensitivity

hearing sensitivity is defined as hearing thresholds from –10 to 15 dB HL. Hearing sensitivity between 16 and 25 dB HL is considered minimal or borderline; between 26 and 40 dB HL is considered mild hearing loss; between 41 and 55 dB HL is considered moderate hearing loss; between 56 and 70 dB HL is considered moderately severe hearing loss; between 71 and 90 dB HL is considered severe hearing loss; and greater than 91 dB HL is considered profound hearing loss. Hearing sensitivity would be

loss; and greater than 91 dB HL is considered profound hearing loss. Hearing sensitivity would be evaluated in an individual with autism spectrum disorders if questions regarding hearing abilities existed, but more systematic research needs to be completed regarding auditory acuity in the population of individuals with autism.

### See Also  *   Hearing Sensitivity *   Hearing Threshold   ## Auditory Brainstem Response (ABR)  ### Synonyms  Brainstem auditory evoked response (BAER)  ### Definition  Auditory brainstem response (ABR), sometimes called brainstem auditory evoked response (BAER), is an electrophysiologic test that assesses the auditory system through the low brainstem. This test can assess hearing sensitivity in individuals who cannot respond to traditional testing; thus, it is often used in newborn

in individuals who cannot respond to traditional testing; thus, it is often used in newborn hearing screenings and on populations that are nonverbal. The ABR is completed by placing electrodes on the individual’s head and ears and placing earphones in their ears. Responses are elicited using click and tonal stimuli which are delivered through the earphones. Five waveforms are typically present in the ABR (waves I, II, III, IV, and V); however, wave V is the waveform used for threshold testing.

the ABR (waves I, II, III, IV, and V); however, wave V is the waveform used for threshold testing. Individuals with autism spectrum disorders might not be able to consistently respond to traditional tests of hearing sensitivity; therefore, ABR may be useful in establishing hearing sensitivity for these individuals.

### See Also  *   Auditory Acuity *   Brainstem Audiometry *   Hearing   ### Synonyms  Auditory brain area  ### Definition  The human auditory cortex occupies a large portion of the superior temporal gyrus located along the sylvian fissure dorsally and the superior temporal sulcus ventrally (Brodmann area 41, 42, and 22). The dorsal surface of the superior temporal gyrus is located within the sylvian fissure and is divided into Heschl’s gyrus, the planum temporale, and the planum polare. Studies

fissure and is divided into Heschl’s gyrus, the planum temporale, and the planum polare. Studies have suggested that the primary auditory cortex in humans is mainly confined to the anterior-medial wall of Heschl’s gyrus. This brain region is vital in decoding and processing spoken language and sounds. The planum temporale, also vital in auditory processing, is located posterior to Heschl’s gyrus and lies on the superior surface of the posterior superior temporal sulcus. While high-frequency

and lies on the superior surface of the posterior superior temporal sulcus. While high-frequency sounds activate a small lateral region anterior to the intersection of Heschl’s gyrus and the superior temporal gyrus and a more extensive medial region posterior to the tip of Heschl’s gyrus, low-frequency sounds activate lateral regions centered on mid-Heschl’s gyrus and extending posteriorly along the superior temporal gyrus.

Neuroimaging research has identified anatomical and functional abnormalities in the planum temporale in individuals with autism spectrum disorder. While anatomical abnormalities include abnormal asymmetry, altered minicolumn organization, and altered cell type and count, the functional abnormalities include abnormal feature extraction and sensitivity to sounds.

### See Also  *   Auditory Acuity *   Auditory Processing *   Cortical Language Areas *   Primary Sensory Areas *   Wernicke’s Aphasia   ## Auditory Discrimination  ### Definition  While enhanced discrimination and memory for musical pitch have been widely described in the literature on musical savants with autism, it is only in more recent times that such abilities have been observed in autistic individuals without savant skills (see Heaton 2003). Bonnel et al. (2010) studied auditory

autistic individuals without savant skills (see Heaton 2003). Bonnel et al. (2010) studied auditory perception in individuals with high-functioning autism and Asperger’s syndrome and showed that enhanced pitch discrimination was more prevalent in those with late speech onset and was not associated with atypical discrimination of stimuli that were spectrally and/or temporally complex. Research identifying enhanced discrimination of pitch change in linguistic stimuli (Jarvinen-Pasley and Heaton

enhanced discrimination of pitch change in linguistic stimuli (Jarvinen-Pasley and Heaton 2007) has shown that atypical pitch processing is not limited to music but generalizes across auditory domains. This suggests that difficulties in understanding pitch-mediated linguistic cues or prosody, demonstrated in a number of studies (for review McCann and Peppe 2003), are not perceptual in origin but result from abnormalities in higher-order cognitive operations. Building on the enhanced perceptual

result from abnormalities in higher-order cognitive operations. Building on the enhanced perceptual functioning model, the neural complexity hypothesis (see Samson et al. 2010) is able to account for enhanced pitch discrimination as well as abnormalities in processing acoustically complex stimuli. According to this model, autism is characterized by a bias toward the perceptual features of auditory information. At the behavioral level, this can be associated with enhanced processing of low-level

information. At the behavioral level, this can be associated with enhanced processing of low-level stimuli and atypical processing of higher-order information, such as greater focus toward the perceptual aspects of speech stimuli.

### See Also  *   Autistic Savants *   Enhanced Perceptual Functioning   ## Auditory Integration Therapy  ### Definition  Auditory integration training (AIT) is an intervention technique which is currently considered experimental. It was created to attempt to improve the way individuals with autism spectrum disorders (ASD) recognize and respond to sound and to reduce other behaviors associated with ASD. AIT has also been referred to as auditory enhancement training (AET) and

associated with ASD. AIT has also been referred to as auditory enhancement training (AET) and audio-psycho-phonology (APP).

### Historical Background  Auditory integration training (AIT) was first written about in 1982 in a book by the otolaryngologist Guy Berard, which was translated in 1993 from French to the English title Hearing Equals Behavior. In his writing, Berard suggests that various disorders (“autism,” hyperactivity, depression, learning difficulties) are associated with atypical sensitivity to sound.

The AIT technique became widely popular after the 1991 publication of Annabel Stehli’s The Sound of a Miracle: A Child’s Triumph over Autism. In this book, Stehli described the full recovery of her daughter, who was diagnosed with autism and schizophrenia, after 10 h of AIT at Berard’s clinic. In 1994, the American Speech-Language-Hearing Association (ASHA) published a review of the existing data on AIT in response to such accounts linking AIT to increased eye contact, social awareness,

data on AIT in response to such accounts linking AIT to increased eye contact, social awareness, verbalizations, auditory comprehension, and articulation and reduced tantrums and hyperacusis (i.e., oversensitivity to certain frequency ranges of sound) in children with autism spectrum disorders, learning difficulties, attention deficit disorder, and dyslexia. Currently, several professional organizations (including the American Speech-Language-Hearing Association, the American Academy of

organizations (including the American Speech-Language-Hearing Association, the American Academy of Audiology, the Educational Audiology Association, and the American Academy of Pediatrics) indicate that AIT should be considered an experimental rather than an evidence-based treatment due to the lack of scientific data supporting its benefits. While in the United States the majority of AIT practitioners use the original Berard or a modified methodology, there are other methods of AIT in existence

use the original Berard or a modified methodology, there are other methods of AIT in existence (including the Tomatis and Clark methods).

### Rationale or Underlying Theory  Dr. Guy Berard, an ear, nose, and throat (ENT) physician, first introduced auditory integration training (AIT) suggesting that many learning and behavioral disorders, “including autism,” are associated with hypersensitivity to sound at particular frequencies possibly resulting in disturbances in learning and discomfort. He suggested that although many children with autism spectrum disorders (ASD) can hear sound, the way in which they process sounds is

with autism spectrum disorders (ASD) can hear sound, the way in which they process sounds is different and can result in reduced emotional responsiveness and repetitive behaviors even if hypersensitivity to sound does not exist.

### Goals and Objectives  In 1982, Dr. Berard suggested that auditory integration training (AIT) would involve a “reeducation” of the hearing process for individuals with autism spectrum disorders (ASD) targeting the atypical sound perception theorized to be present in a variety of behavioral and learning disorders. Specifically, he suggests the training of the middle ear muscles, and the auditory nervous system is targeted through listening exercises.

### Treatment Participants  Auditory integration training (AIT) has been promoted by Dr. Berard as a useful intervention for a variety of disorders (e.g., learning disabilities, behavior disorders, autism, pervasive developmental disorder, attention deficit disorder, attention deficit hyperactivity disorder, tinnitus, progressive deafness, hyperacusis, allergic disorders, depression, suicidal tendencies, poor organizational skills) and has also been recommended for reducing foreign accents and

poor organizational skills) and has also been recommended for reducing foreign accents and writer’s block.

### Treatment Procedures  Auditory integration training (AIT) begins with an audiogram (i.e., a graph showing the results of a pure-tone hearing test) to determine whether auditory “abnormalities” exist. The treatment involves ten consecutive days of therapy centered upon listening to music (that has been modified to dampen certain sound frequencies and intensities to correspond to those found abnormal on the audiogram) for 30 min twice a day. It is recommended that sessions occurring on the

abnormal on the audiogram) for 30 min twice a day. It is recommended that sessions occurring on the same day be separated by at least 3 h, while a 2-day interruption of therapy on weekends is allowed. Audiograms are also used to determine if filter settings need to be adjusted mid-intervention and to monitor response to treatment post-intervention. Berard asserts that following AIT, audiograms show that auditory distortions are eliminated, as they become “flattened.” He explains that the “peaks

that auditory distortions are eliminated, as they become “flattened.” He explains that the “peaks and valleys” in the original audiograms reflect areas of hyper- and hypo-sensitivity, but there is debate as to whether these patterns truly indicate auditory “abnormalities.”

Following the recommended 20 auditory integration therapy (AIT) sessions in Dr. Berard’s method, an audiogram is obtained and reviewed, while changes in behavior patterns are examined to measure outcome. In efficacy studies of AIT, outcome measures have included post-intervention assessments in the following areas: cognitive ability, core features of autism (i.e., social interaction, communication, and behavioral problems), hyperacusis, auditory processing, behavioral problems, attention and

and behavioral problems), hyperacusis, auditory processing, behavioral problems, attention and concentration, activity level, quality of life in school and at home, and adverse events. The US Food and Drug Administration (FDA) banned the import of the Berard’s original equipment (Audiokinetron or Ears Education and Retraining System) used for AIT as a medical device based on finding that there was no sufficient evidence to support that it benefited individuals medically. The FDA regards the

was no sufficient evidence to support that it benefited individuals medically. The FDA regards the Audiokinetron as an educational aid but not appropriate for the treatment or curing of any medical conditions, such as autism spectrum disorders. The Digital Auditory Aerobics (DAA) device was introduced as a result of this limited access to the Audiokinetron in the United States. The 20 compact disks (CDs) (each containing 30 min of modulated music) available with this device are believed to match

(CDs) (each containing 30 min of modulated music) available with this device are believed to match the output of the Audiokinetron device. Other AIT programs are available (e.g., Samonas Sound Therapy, The Listening Program) which provide music on CDs and promise similar results to Berard’s AIT programs.

### Efficacy Information  The efficacy of auditory integration training (AIT) continues to be debated. A review of the available existing research indicates that three studies suggest improvements with AIT at 3 months post-intervention based on reported improved performance scores on the Aberrant Behavior Checklist. It should be noted that investigators in these studies were associated with organizations that promote or directly provide AIT. Similar results have not yet been replicated by any

that promote or directly provide AIT. Similar results have not yet been replicated by any independent studies. The review highlights the fact that the studies examining AIT were not randomized controlled trials (used to minimize bias), did not contain control or alternative treatment group, and involved single or very few participants or used surveys or animals.

The American Speech-Language-Hearing Association (ASHA) issued a report on AIT, in which it states that further research in AIT is discouraged given the lack of evidence that it is an effective treatment for individuals with autism spectrum disorder (ASD) but indicates that a “high level of evidence” of its efficacy should be provided if future AIT trials are conducted. ASHA also cautioned parents to take precautions to avoid hearing loss while also being aware of the costs involved in receiving

to take precautions to avoid hearing loss while also being aware of the costs involved in receiving AIT. In studies where children or adults with ASD (ages 3–39 years) were selected and randomly assigned to study treatment groups, though no adverse effects were reported, no noteworthy changes were found in the participants’ ability to process sound, their quality of life, or their core and associated features of ASD following AIT. ASHA expressed concerns that clear criteria (based on

and associated features of ASD following AIT. ASHA expressed concerns that clear criteria (based on evidence-based research) are not available, indicating which individuals will be most appropriate for AIT, and families could find both their financial resources and hope strained or depleted by investing in interventions that lack empirical support. In addition, the professional organization had reservations regarding the variability in AIT treatment protocols and the possible noise-induced

reservations regarding the variability in AIT treatment protocols and the possible noise-induced hearing loss that might be associated with AIT devices, as sufficient data on the risk to participants regarding intensity of sound and length of presentation is not currently available for the devices. In more recent studies (2013–2016), electrophysiological changes and behavioral changes via caregiver report were observed in children with ASD following a series of AITsessions. Authors of these

report were observed in children with ASD following a series of AITsessions. Authors of these studies suggested further research to explain the neural mechanisms of how AIT may affect such changes. Still, studies during this same time period suggested the lack of efficacy of AIT, some suggesting increased occurrence of stereotypy post-AIT. Considering that ASD behaviors can often resemble auditory processing disorders (APD), ASHA has also ruled out the diagnosis of APD, for which AIT is often

processing disorders (APD), ASHA has also ruled out the diagnosis of APD, for which AIT is often suggested, in children with ASD unless reliable testing reveals deficits on multiple assessments. In the case that a child with ASD does meet this guideline, the benefit of receiving intervention involving listening tasks with limited social interaction can also be questioned.

### Qualifications of Treatment Providers  The majority of auditory integration training (AIT) practitioners are speech-language pathologists or audiologists but have also included psychologists, physicians, social workers, and teachers. No training is required to operate the Digital Auditory Aerobics (DAA) device that is currently used within the United States to provide AIT based on Berard’s method. Other AIT programs do provide trainings to practitioners (e.g., The Listening Program [2½

method. Other AIT programs do provide trainings to practitioners (e.g., The Listening Program [2½ days], Samonas Sound Therapy [offers a credentialing process following pre-workshop training, initial and advanced workshop training, and a year of practice]). The American Speech-Language-Hearing Association, the American Academy of Audiology, the Educational Audiology Association, and the American Academy of Pediatrics nonetheless all state that AIT should be considered an experimental rather

Academy of Pediatrics nonetheless all state that AIT should be considered an experimental rather than an evidence-based treatment due to the limited amount of scientific research studies supporting its benefits.

*   Aberrant Behavior Checklist *   American Speech-Language-Hearing Association Functional Assessment of Communication Skills

*   Auditory Processing Disorder    An auditory potential is an electroencephalographic (EEG) response, less than a millivolt, time-locked to an auditory sound such as a click, tone, or speech sound. It is recorded from scalp electrodes and consists of averaged responses to a series of sounds. Averaging removes background EEG activity, usually considered to be unrelated to the auditory potential.

A brief sound such as a click triggers at least 15 waveform peaks that unfold over the first second (Picton et al. 1974). These alternating positive and negative peaks reflect the flow of auditory information from the brainstem to the cortex. The short-latency peaks appearing during the first tenth of a second (10 ms) originate from the primary auditory pathway of the brainstem. Central Auditory Processing Disorders (CAPDs) were described in early 1940s and have recently become of interest to ASD

Disorders (CAPDs) were described in early 1940s and have recently become of interest to ASD researchers (see Ocak et al. 2018). Auditory middle latency responses are promising auditory tests that allow the identification of functional deficits of the central auditory pathways, and the cerebral hemispheres in school children with reading and writing learning disorders. The recording of these potentials ensure visualization of the electrical activity of the primary auditory cortex and the auditory

ensure visualization of the electrical activity of the primary auditory cortex and the auditory thalamus-cortical pathways, from the observation of a sequence of waves, negative (N) and positive (P). Na, Pa, Nb, Pb occur in 10–80 ms intervals after stimuli (McPherson et al. 2008).

The later auditory potentials, a subset of event-related potentials (ERPs), represent the sum of neural activity originating from spatially distinct sources. They are usually studied with multiple scalp electrodes that enable determination of waveform scalp topography. Mid-latency auditory peaks, which appear during the 10–50-ms interval, have few well-established clinical findings. Attention effects are seen under some conditions during the later part of this interval. Long-latency peaks

effects are seen under some conditions during the later part of this interval. Long-latency peaks appearing between 50 and 1,000 ms have received the most study. The specific timing of these peaks depends on both the auditory stimulus characteristics and the task demands. They are named starting with the initial positive peak (P1) at 50 ms usually maximal at the frontocentral electrodes. Next is the negative peak (N1) at around 100 ms, maximal at the vertex. P2 peaks at 150–200 ms. The negative

negative peak (N1) at around 100 ms, maximal at the vertex. P2 peaks at 150–200 ms. The negative peak (N2) is typically maximal at 200–300 ms at central sites. The P3 peak at 300–400 ms is attention dependent. Amplitude is inversely related to stimulus probability, and latency is positively related to task difficulty. Developmentally, the scalp location of the maximum depends on task conditions. These waveform peaks each reflect several underlying components. The waveform peaks should be

These waveform peaks each reflect several underlying components. The waveform peaks should be distinguished from the components, which refer to potential neural sources. Unless the component is large such as P3b, it usually needs to be isolated with difference waves or by experimental design (Luck 2005). The component peaks are often identified by the number of milliseconds to peak, e.g., N75 and P100. Auditory ERPs are also used to study language processing. An N400 component, maximal over

and P100. Auditory ERPs are also used to study language processing. An N400 component, maximal over central and parietal sites, is seen when there is a semantic deviation from expectations, e.g., the last word in a sentence is out of context. P3a, P3b, and N400 components do not appear before ages 3 or 4 years. A central, frontal negative component, at 400–500 ms, reflecting attention has been identified in early infants and labeled “Nc.” A recent review concluded that persons with autism show

in early infants and labeled “Nc.” A recent review concluded that persons with autism show differences in many of the long-latency components (Jeste and Nelson 2009).

### See Also  *   Brainstem Auditory Evoked Potentials *   Electroencephalogram (EEG) *   Event-Related Potential (ERP) *   Evoked Potentials    Central auditory processing disorder (CAPD) may be considered when a child is having difficulties producing or understanding verbal language. Lack of appropriate response to what others say may cause people to think the child may be deaf; however, audiological examination of children with CAPD is entirely normal. These children can hear and detect

examination of children with CAPD is entirely normal. These children can hear and detect sounds, but their ability to process these sounds meaningfully is not developing as expected. These children may have difficulty recognizing sounds or discriminating between different sounds. CAPD is a controversial diagnosis that is not currently part of conventional diagnostic systems but is increasingly identified in the USA and

reports include defensive reactions and lower pleasantness ratings to tactile stimuli (Tomchek and Dunn 2007). Abnormal responses to touch in ASD seem to be present, prodomally, in the first year of life (Kadlaskar et al. 2019). Specifically, infants who are later diagnosed with ASD fail to shift their attention in response to caregiver touch, and even when they do attend to their mother’s touch, they seem to orient away from it. In addition, infants who attend less to caregiver’s touch at 12

they seem to orient away from it. In addition, infants who attend less to caregiver’s touch at 12 months old present more ASD symptomatology as measured by the autistic diagnostic observation tool (ADOS) at age 3 (Kadlaskar et al. 2019). There seems to be evidence of tactile disfunction early in ASD, but the abnormal responses are heterogeneous and may have different etiologies. Missing tactile stimuli in the environment (sensory hyporesponsiveness) has been found previously in young children

stimuli in the environment (sensory hyporesponsiveness) has been found previously in young children with ASD (Foss-Feig et al. 2012). However, there are other mechanisms by which sensory impairments may relate to symptoms of ASD. For example, the degree to which a child seeks (sensory seeking) or is bothered by tactile stimuli (sensory hyperresponsiveness) can also result in failing to attend to appropriate stimuli in the environment and consequently result in missed learning opportunities

to appropriate stimuli in the environment and consequently result in missed learning opportunities (Baranek et al. 2007). Atypical behavioral responses to touch may directly impact the way children and adolescents interact with others, both contemporaneously, and over time. It is hypothesized that children engaging in sensory seeking behaviors are too distracted with enhancing their sensory experiences and therefore miss social cues in their environment (Foss-Feig et al. 2012). Others suggest

and therefore miss social cues in their environment (Foss-Feig et al. 2012). Others suggest that hyperresponsiveness/tactile defensiveness is the pattern that mostly affects the ability to socialize in ASD (Miguel et al. 2017) and is in fact one of the patterns of behavior that best differentiates ASD from typically developing children. However, hyporesponsiveness to touch seems to be the pattern that gathers greater consensus among researchers on the cascading effects on development over time

that gathers greater consensus among researchers on the cascading effects on development over time (Foss-Feig et al. 2012; Miguel et al. 2017). Children who miss tactile experiences due to hyporesponsiveness will have fewer opportunities to engage meaningfully and learn from their physical environment and social experiences.

The relationship between tactile and social processing in ASD may occur at multiple levels, and it is not yet well understood where in the biological hierarchy (e.g., sensory receptors, perception, attention, cognition) there is a breakdown that results in ASD behavioral characteristics (phenotype). Some studies point to differences in how tactile stimuli are processed at a peripheral level, namely, touch detection and stimuli discrimination, but findings are inconclusive (Riquelme et al.

namely, touch detection and stimuli discrimination, but findings are inconclusive (Riquelme et al. 2016). Others suggest differences in neurotransmitters – specifically GABAergic function (the major inhibitory neurotransmitter in the central nervous system), crucial for balance between excitatory and inhibitory tactile input at a cortical level (Tavassoli et al. 2016). A specific class of tactile mechanoreceptors, C-tactile (CT) neurons, involved in encoding the valence/pleasantness of a stimulus

C-tactile (CT) neurons, involved in encoding the valence/pleasantness of a stimulus (Loken et al. 2009), have been hypothesized to underlie the atypical responses in ASD. By encoding the valence of a stimulus, these fibers are intrinsically related to social cognition and our ability to bond with others. Children with ASD present more aversive reactions to touch delivered to CT-innervated body regions, such as the face and arm, compared to non-CT-innervated regions, such as the palm of the hand

such as the face and arm, compared to non-CT-innervated regions, such as the palm of the hand (Cascio et al. 2016). Moreover, at a brain level, children with ASD show diminished responses in social-affective brain networks compared to typically developing children following CT-targeted touch stimulation (Kaiser et al. 2016). Touch processing seems to be altered in ASD; however, how heterogeneous behavioral responses to touch are related to social-communication problems in ASD is under

behavioral responses to touch are related to social-communication problems in ASD is under deliberation. Atypical touch processing, whether characterized as hyporesponsiveness, sensory seeking, or hyperresponsiveness, can result in reduced exposure to important stimuli causing an altered trajectory of the developing social brain in infancy. Altered tactile processing emerges before many of the social and communicative impairments associated with ASD and has strong theoretical grounding as a

social and communicative impairments associated with ASD and has strong theoretical grounding as a developmental precursor to social-communicative behavior. By understanding the behaviors and mechanisms that underlie atypical touch processing, we can design and improve diagnostic and treatment tools for these individuals.

Synonyms Sensory integration and praxis tests (SIPT); Sensory processing; Tactile sensitivity

Definition Touch sensitivity, or sensitivity to tactile stimuli, has been noted in children with autism spectrum disorders (Baranek et al. 1997). Children with tactile hypersensitivity may show a reluctance to manipulate various toys, materials, or foods based on their texture or may exhibit exaggerated or persistent responses to unexpected touch occurrences and may even avoid situations in which these events or unusual textures may occur. Some children may be hypervigilant to the potential

these events or unusual textures may occur. Some children may be hypervigilant to the potential threat of unexpected touch which may ultimately compromise successful participation in a designated activity. Clothing selection, play materials, and food choices may also be restricted if they are perceived to be unpleasant to the individual. Some individuals may exhibit hyposensitivity to touch or an underreaction to touch occurrences. These individuals may display a more passive response to

or an underreaction to touch occurrences. These individuals may display a more passive response to tactile stimuli and may not notice when clothing is twisted on their body or food is left on their face. Tool usage may also be affected as the individual may not have adequate feedback in the hand for effective manipulation.

Epidemiology Transient tics, which have a duration of less than 6 months, are common in childhood. Estimates suggest that 4–24% of school-aged children experience tics (Khalifa and von Knorring 2003; Scahill et al. 2005). Roughly one-quarter of children experience chronic motor or vocal tics. Chronic tics have a duration of at least 1 year. Once thought to be much rarer, the current lifetime prevalence estimates for Tourette syndrome ranges from 0.1% to 1%. Tic disorders are much more common

estimates for Tourette syndrome ranges from 0.1% to 1%. Tic disorders are much more common in children with pervasive developmental disorders and in special education populations than would be expected by chance (Canitano and Vivanti 2007; Kurlan et al. 2001). Studies have estimated that the occurrence of Tourette syndrome may be greater than 10% among autistic children (Canitano and Vivanti 2007). Prevalence of tic disorders peak during the late first decade and early second decades of life due

Prevalence of tic disorders peak during the late first decade and early second decades of life due to the clinical course of the disorder and are roughly one-third as prevalent in adulthood (Bloch and Leckman 2009; Bloch et al. 2006; Leckman et al. 1998). There is a male predominance of TS with boys about twice as likely to be affected by tic disorders as girls (Scahill et al. 2005).

Natural History, Prognostic Factors, and Outcomes The onset of TS is usually characterized by the appearance of simple, transient motor tics that affect the face (typically eye blinking) around the age of 5–7 (Leckman et al. 1998). Over time, these simple motor tics generally progress in a rostrocaudal direction affecting other areas of the face, followed by the head, neck, arms, and, lastly and less frequently, the lower extremities. With time, vocal tics often appear, tics become

lastly and less frequently, the lower extremities. With time, vocal tics often appear, tics become increasingly complex, and premonitory urges appear. Premonitory urges are feelings of tightness, tension, or itching that are accompanied by a mounting sense of discomfort or anxiety that can be relieved only by the performance of a tic (Leckman et al. 1993). With increasing awareness of premonitory urges, TS patients begin to exhibit a variable degree of voluntary control over tic performance.

urges, TS patients begin to exhibit a variable degree of voluntary control over tic performance. However, this voluntary control should be likened to that governing control of eye blinking. Eye blinking and tics can both be inhibited voluntarily, but only for a limited period of time and only with mounting discomfort. Thus, some adult TS patients are able to demonstrate nearly complete control over when expression of their tics will occur. However, when complete or near complete control of tics

when expression of their tics will occur. However, when complete or near complete control of tics is present, resistance to the mounting tension of premonitory urges can produce mental and physical exhaustion even more impairing and distracting than the tics themselves.

The severity of tics in TS waxes and wanes throughout the course of the disorder (Peterson and Leckman 1998). Tics are highly variable from minute to minute, hour to hour, day to day, week to week, and month to month. Tic episodes occur in bouts, which in turn also tend to cluster. Tic symptoms, however, can be exacerbated by stress, fatigue, extremes of temperature, and external stimuli (i.e., in echolalia tics). Intentional movements attenuate tic occurrence over the affected area, and

in echolalia tics). Intentional movements attenuate tic occurrence over the affected area, and intense involvement and concentration in activities tends to dissipate tic symptoms. TS symptoms generally peak in severity between the ages of ten and twelve. Tic severity typically begins to decrease with the onset of adolescence (Bloch et al. 2006; Leckman et al. 1998). Reduction in tic severity generally ends by the early twenties. Although a small minority of TS patients does experience

generally ends by the early twenties. Although a small minority of TS patients does experience catastrophic outcomes in adulthood, on the whole, individuals rarely experience either a sustained worsening or improvement of their symptoms after their mid-20s. One-half to two-thirds of individuals with TS experience a marked reduction of symptoms by their late teens and early twenties, with one-third to one-half of these patients becoming virtually asymptomatic in adulthood.

Evaluation and Differential Diagnosis A diagnosis of Tourette syndrome or chronic tic disorders is made through clinical history and observation. A childhood onset, the waxing-and-waning severity, and changing nature of tic symptoms are critical in establishing the diagnosis. In older children, the presence of premonitory urges and the exacerbation of tics in response to stress and fatigue are also helpful clues in establishing the diagnosis. In children, tics often need to be distinguished

also helpful clues in establishing the diagnosis. In children, tics often need to be distinguished from stereotypies of stereotyped movement disorders or pervasive developmental disorders. Stereotypies typically have an earlier age of onset than tics, are bilateral rather than unilateral, and have a soothing quality. Table 1 contrasts the attributes of tics and stereotypies.

| Tics | Stereotypies | |---|---| | Typical age of onset | 4–8 Years | 2–3 Years | | Course of symptoms | Waxing and waning | Constant | | Timing of movements | Brief and sudden | Continuous, rhythmic, and prolonged |
| Typical movements | Eye blinking, facial grimace, throat clearing | Arm flapping, rocking |

| Characteristics of movements | Typically unilateral | Often bilateral | | Exacerbated by. . . | Stress, fatigue | Excitement | | Premonitory urges | Present | Absent | | Suppressibility | Often for short periods of time | Rare | | Comorbid conditions | OCD, ADHD | PDD, autism spectrum disorders | | Treatment | Neuroleptic, α2 agonists | No response to medication |  Complex tics often also need to be distinguished from compulsions of obsessive-compulsive disorder. Making this particularly

to be distinguished from compulsions of obsessive-compulsive disorder. Making this particularly difficult is the high comorbidity between the two conditions. Compulsions are usually performed in response to an obsession and preceded by anxiety, worry, or concern, whereas tics are generally performed in response to a physical sensation or premonitory urges. Compulsions typically are more elaborate than tics and are more likely to resemble “normal” behavior. Often, both a diagnosis of OCD and a

than tics and are more likely to resemble “normal” behavior. Often, both a diagnosis of OCD and a tic disorder are warranted in the same individual. The tics, which are the most prominent feature of TS, are often neither the first nor the most impairing psychological disturbance TS patients endure. Thus, a thorough evaluation for common comorbid conditions is also critical (Scahill et al. 2006). In screening for comorbidities in TS, ADHD, OCD, disruptive behaviors, and pervasive developmental

In screening for comorbidities in TS, ADHD, OCD, disruptive behaviors, and pervasive developmental disorders are of principle importance. Children with TS have higher rates of OCD, ADHD, PDD, and disinhibited speech and behavior compared to the general population. In the natural course of comorbid psychiatric illness in TS, ADHD symptoms, when they occur typically, precede the onset of tic symptoms by a couple of years, whereas OC symptoms typically present around the age of 12–13 after tics

by a couple of years, whereas OC symptoms typically present around the age of 12–13 after tics have reached their peak severity (Bloch et al. 2006). Approximately half of children with Tourette syndrome experience comorbid ADHD and an even greater proportion of children with tic disorders reaching clinical attention. Roughly one-third to one-half of Tourette syndrome patients will experience clinically significant OCD symptoms during the course of their lifetime.

Educating the patient, his family members, teachers, and peers is among the most important interventions available to the clinician. It should be undertaken for nearly all patients with tic disorders. Family psychoeducation should focus on:
1. The tics are not voluntary or meant to be intentionally provocative. They typically occur in “bouts” when tics will appear in rapid succession followed by a tic-free interval.

2. Premonitory urges – the physical sensations like an itch or before a sneeze that many patients experience prior to performing tics. TS is a sensorimotor disorder. There is also a momentary sense of relief that follows the completion of the tic.

3. Suppressibility of tics – many patients are able to suppress their tics over the short term, but often this is at the expense of increasing discomfort and distraction due to the premonitory urges. So it is not uncommon for a child to have relatively minor tics at school and then return home to let loose a bout of tics.

4. The natural waxing-and-waning course of tic symptoms – that there will be increases and decreases in tic severity over time. Due to the natural ebb and flow of symptoms in the illness, any interventions started during an exacerbation of tic severity may appear successful due to a natural decline in symptom severity.

5. The natural history of tic disorders – the illness tends not to be relentlessly progressive and symptoms usually improve by adulthood. This information often contradicts the impressions gained from the available lay literature on TS that typically focuses on the most extreme cases – which do typically occur in adulthood.

6. Exacerbating and alleviating factors – tics tend to be exacerbated by fatigue, sleeplessness, stress, excitement, and possibly changes in temperature and streptococcal infections. Tics often tend to be alleviated when a child is deeply engaged in a motor activity such as sports, playing musical instruments, and dancing. The exact exacerbating and alleviating factors are highly individualized to the patient. Healthy habits such as good sleep hygiene and regular exercise can only improve tic

to the patient. Healthy habits such as good sleep hygiene and regular exercise can only improve tic symptoms.

7. Education on comorbid ADHD, OCD, learning disabilities, and disruptive or disinhibited behaviors when present. Improving these disorders often leads to an improvement in the tics.
8. Provide resources to help educate parents and teachers about tic disorders. These are available at the Tourette Syndrome Association website: http://www.tsa-usa.org and http:// www.tourettesyndrome.net.

Treatment Given the waxing and waning course of tics and the decline in tic severity that usually occurs in adolescence, any intervention performed in response to symptom exacerbation will usually be followed by clinical improvement. The goal of treatment should be minimizing the level of social and educational impairment caused by tics rather than completely eliminating tics, which will be unsuccessful in the majority of cases. Many cases of TS can be successfully managed without medication.

in the majority of cases. Many cases of TS can be successfully managed without medication. When coexisting conditions such as ADHD, OCD, depression, or ODD are present, it is usually better to treat these “comorbid” conditions first, as successful treatment of these disorders often will diminish tic severity (Scahill et al. 2006).

Pharmacologic Interventions Antipsychotic medications, dopamine D2 receptor antagonists, are the most effective tic-suppressing medications (Scahill et al. 2006; Singer 2010). Among the typical antipsychotics, haloperidol and pimozide have the most studied and have the most convincing data demonstrating efficacy. Although antipsychotics have the greatest efficacy in treating tics, they are generally not recommended as first-line treatment because of poor tolerability. Common potential side

not recommended as first-line treatment because of poor tolerability. Common potential side effects include tardive dyskinesia, acute dystonic reactions, sedation, depression, school and social phobias, and/or weight gain. In many instances by starting at low doses and adjusting the dosage upward slowly, clinicians can avoid these side effects. The goal should be to use as little of these medications as possible to render the tics “tolerable.” Efforts to stop the tics completely often risk

as possible to render the tics “tolerable.” Efforts to stop the tics completely often risk overmedication and increased side effects. Due to the extrapyramidal side effects associated with typical antipsychotics, atypical antipsychotics, such as risperidone, olanzapine, and ziprasidone, are now the most widely used medications to treat tic symptoms. These agents have potent 5-HT2 blocking effects as well as more modest blocking effects on dopamine D2. There are currently double-blind clinical

as well as more modest blocking effects on dopamine D2. There are currently double-blind clinical trials that have supported the efficacy of risperidone, olanzapine, and ziprasidone (Singer 2010). Atypical antipsychotics, especially olanzapine and risperidone, are associated with significant weight gain and sedation and increased risk of diabetes. Ziprasidone use can be associated with QT prolongation in children; so serial monitoring with electrocardio-grams may be necessary. Due to the

in children; so serial monitoring with electrocardio-grams may be necessary. Due to the significant metabolic side effects associated with atypical antipsychotics, even though they are more effective at treating tics than other classes of medications, they are not recommended as a first-line intervention.

Clonidine and guanfacine are potent α2 receptor agonists that are thought to reduce central noradrenergic activity. Although less effective in relieving tics compared to the antipsychotic medication, α2 receptor agonists have the advantage of being better tolerated and also improving comorbid ADHD symptoms in patients with tics (Scahill et al. 2006; Singer 2010). The principal side effect associated with clonidine use is sedation which occurs in 10–20% of subjects and which usually abates with

with clonidine use is sedation which occurs in 10–20% of subjects and which usually abates with continued use. Other side effects include dry mouth, transient hypotension, and rare episodes of worsening behavior. Clonidine should be tapered and not withdrawn abruptly, to reduce the likelihood of symptom or blood pressure rebound. Guanfacine is generally preferred to clonidine because it is less sedating and not associated with rebound hypertension following withdrawal. When comorbid ADHD is the

and not associated with rebound hypertension following withdrawal. When comorbid ADHD is the most impairing illness in a patient presenting with comorbid tics, the stimulants methylphenidate and dextroamphetamine derivatives are still first-line agents for the medical management of ADHD. Although clinical trials of meta-analysis of psychostimulant use in children with ADHD and comorbid tics suggest that these medications do not worsen tic severity, there still exists an FDA warning against the

that these medications do not worsen tic severity, there still exists an FDA warning against the use of psychostimulants in children with tic disorders or a family history of TS (Bloch et al. 2009). This FDA warning was exclusively based on data from clinical case reports and case series that reported worsening of tics when children were exposed to psychostimulants. For this reason, non-stimulant treatments are often used in the treatment of children with ADHD and comorbid tics. α2 receptor

treatments are often used in the treatment of children with ADHD and comorbid tics. α2 receptor agonists have the advantage of demonstrated efficacy for both ADHD and tic symptoms. Furthermore, the combination of clonidine and methylphenidate has been demonstrated to be more effective in treating ADHD symptoms in children with comorbid tics than either medication alone. Atomoxetine has also been demonstrated to be effective in the treatment of ADHD symptoms in children with comorbid tics and may

to be effective in the treatment of ADHD symptoms in children with comorbid tics and may also be modestly helpful in the treatment of tics.

Behavioral Behavioral therapy has shown significant promise in the treatment of tic disorders. Behavioral therapy has been demonstrated to be significantly more effective than supportive therapy in reducing tic severity in children with TS in a large, randomized, multicenter trial using blinded raters (Piacentini et al. 2010). Behavioral therapy has also been shown to significantly reduce tic symptoms in adults with TS when compared to supportive therapy in randomized and unblended trials

symptoms in adults with TS when compared to supportive therapy in randomized and unblended trials (Deckersbach et al. 2005; Wilhelm et al. 2003). The measured effects of behavioral therapy in reducing tic severity have been similar to the most effective pharmacological agents used to treat tics. Behavioral therapy for tics consists of two main components: (1) awareness training and (2) competing response practice (Woods 2001). Awareness training consists of 4 components designed to increase an

response practice (Woods 2001). Awareness training consists of 4 components designed to increase an individual’s awareness of his own tics. These components include the following: (1) response description, in which the patient learns how to describe tic movements and reenacts them into a mirror; (2) response detection, in which the therapist aids the patient in tic detection by pointing out each tic immediately after it occurs in the session; (3) early warning procedure, in which an individual

tic immediately after it occurs in the session; (3) early warning procedure, in which an individual learns how to identify the earliest signs of tic occurrence; and (4) situational awareness training, in which an analysis is conducted to identify the high-risk situations where tics are most likely to occur. Competing response practice involves teaching individuals to produce an incompatible physical response (i.e., isometric contraction of tic-opposing muscles) contingent upon the urge to

physical response (i.e., isometric contraction of tic-opposing muscles) contingent upon the urge to perform a tic. Although behavioral therapy has significant evidence of efficacy and does not have the side effect burden of the medications used to treat tics, dissemination remains a significant barrier to the widespread implementation of this treatment for tics. Furthermore, the efficacy of behavioral therapy has not been demonstrated in special populations of children with tic disorders such as

therapy has not been demonstrated in special populations of children with tic disorders such as those with comorbid ADHD, pervasive developmental disorders, or intellectual disability.

Toxicology Susan Hyman Developmental and Behavioral Pediatrics, Division Chief Neurodevelopmental and Behavioral Pediatrics, University of Rochester Golisano Children’s Hospital, Rochester, NY, USA

Synonyms Teratology  Definition Toxicology is the branch of science that studies the adverse effects of chemicals and environmental exposures on living organisms. It includes aspects of biology, chemistry, and medicine in the scientific approaches used. It studies the symptoms, mechanisms, measurement, and treatment of poisonous substances that people and other living things are exposed to. The science of toxicology identifies chemical compounds and environmental events that negatively impact

science of toxicology identifies chemical compounds and environmental events that negatively impact health. It was initially considered as the study of poisons and has been expanded with the technological impact on the environment. The study of dose and effect is central to toxicology. Many compounds, such as lead, are toxic or harmful above certain levels of exposure. The risk for injury increases with the level of exposure. Toxicity refers to the biologic effect of a substrate or compound. The

with the level of exposure. Toxicity refers to the biologic effect of a substrate or compound. The Society of Toxicology defines toxicology as “the study of the adverse effects of chemical, physical, or biologic agents on living organisms and the ecosystem, including the prevention and amelioration of such adverse effects.” Toxicologists are important to the study of the potential role of exposures to environmental agents such as air pollution and maternal use of medication such as selective

to environmental agents such as air pollution and maternal use of medication such as selective serotonin reuptake inhibiters during brain development. The scientists who study toxicology approach question regarding the safety of compounds and events living things are exposed to from the fields of biology, chemistry, medicine, and environmen-tal science, among others. Neurotoxicologists study the effects of chemicals and environmental events on the brain and brain development.

Intervention goals for individuals with autism spectrum disorders (ASD) often include increasing the use of one or more target skills within the treatment sessions. Moreover, comprehensive interventions include strategies to support the generalization of the new target skills. Generalization is the ability to use newly acquired skills with other materials, people (e.g., family members, teachers, peers), and settings (e.g., home, work, school, recess), that differ from the treat-ment sessions.

peers), and settings (e.g., home, work, school, recess), that differ from the treat-ment sessions. The phrase “train and hope” was identified in Stokes and Baer’s (1977) classic review of treatment generalization strategies. “Train and hope” refers to teaching individuals a desired skill within a treatment session and hoping that the individual will generalize the use of that skill without implementation of a predetermined plan or strategy to facilitate generalization. Instead of merely “hoping”

of a predetermined plan or strategy to facilitate generalization. Instead of merely “hoping” for generalization, Stokes and Baer (1977) recommended implemen-tation of explicit and systematic strategies to pro-mote generalization. These strategies include using sequential modification, training sufficient exemplars, programming common stimuli, using natural maintaining contingencies, training loosely, using indiscriminable contingencies, mediating generalization by teaching individuals to monitor

using indiscriminable contingencies, mediating generalization by teaching individuals to monitor their own performance, and training to generalize. Please see generalization and maintenance for an explanation of these generalization strategies.

Parents of individuals with autism spectrum disorder (ASD) often advocate throughout their lifespans on behalf of their offspring. An advocate is “someone who acts on someone’s behalf or for their best interest” (Alper et al. 1995). With respect to individuals with ASD, parent advocacy can take on many forms ranging from advocating to access and obtain individual services to advocating for systemic changes to a service delivery system. With respect to adult services for individ-uals with ASD,

changes to a service delivery system. With respect to adult services for individ-uals with ASD, parents’ knowledge about the adult service delivery system, feelings of empow-erment, and skills to identify, access, and receive needed services can result in effective parent advocacy.

Historical Background Upon aging out of special education services, individuals with ASD shift from an entitlement driven system (i.e., special educations services) to an eligibility driven system (i.e., adult services). Although adult services exist, after exiting special education, many adults with ASD lack needed services (Shattuck et al. 2011). Without services, individuals with developmental disabilities, including ASD, may make little progress (Taylor and Hodapp 2012). Indeed, youth with

disabilities, including ASD, may make little progress (Taylor and Hodapp 2012). Indeed, youth with ASD may go for years without needed services and rely on family to provide support.

Barriers to Receiving Adult Services for Youth with ASD Although there are many barriers to accessing adult services, for brevity, only three barriers will be listed here. First, the adult service delivery system is fragmented. Comprised of a variety of agencies, services, and funding sources, the adult service delivery system stretches across multiple domains including but not limited to employment, health, leisure and recreation, housing or commu-nity living, financial assistance, and

employment, health, leisure and recreation, housing or commu-nity living, financial assistance, and education. Different policies dictate regulations for certain adult services. Health services, for example, are (in part) outlined by the Patient Protection and Affordable Care Act while community living and housing services are (in part) regulated by Section 8 of the Housing Act of 1937. Further, in addition to having a variety of policies relate to different services, some policies overlap. For

addition to having a variety of policies relate to different services, some policies overlap. For example, agencies that receive any federal funding must comply with Section 504 of the American Rehabilitation Act, which provides accommodations and services to individuals with disabilities, including ASD. Such agencies could include post-secondary education institutions, places of employment, and leisure and recrea-tional facilities as long as they receive some federal funding. Due to the

and leisure and recrea-tional facilities as long as they receive some federal funding. Due to the fragmented nature of the service delivery system including the different policies and regulations, parents struggle to access and obtain services for their offspring with ASD.

Second, in addition to being fragmented, adult services are also complicated because, in some instances, certain policies and services impact one’s eligibility and reception of other services. For example, in a given state, the Division of Vocational Rehabilitative Services generally helps individuals with disabilities, including ASD, find, secure, and maintain employment. Unfortunately, many states have waiting lists for Vocational Rehabilitative Services. Often, in these waiting lists,

states have waiting lists for Vocational Rehabilitative Services. Often, in these waiting lists, individuals with disabilities are priori-tized by their level of needs. In some states, the level of need is, in part, determined by whether the individual is receiving supplemental security income (SSI). If the individual is receiving SSI, then the individual has a higher priority on the waiting list. Parents would have to learn how to navigate the SSI regulations to access Vocational

waiting list. Parents would have to learn how to navigate the SSI regulations to access Vocational Rehabilitative services. Thus, the onus is often put on parents to understand the rules of different service delivery systems as well as how the systems relate to one another. Third and finally, adult services are difficult to navigate and receive because they are often eligi-bility driven. Parents of youth with ASD may have grown accustomed to their offspring being entitled to receive special

of youth with ASD may have grown accustomed to their offspring being entitled to receive special education services, which are federally required regardless of the cost to the school. Adult services, however, are eligibility driven, meaning youth with ASD must qualify to receive services. For example, youth with ASD may be eligible to receive a Home and Community Based Services (HCBS) Medicaid Waiver – this waiver reimburses states for providing supports including employment, transportation,

Waiver – this waiver reimburses states for providing supports including employment, transportation, and therapies. One issue with the HCBS Medicaid Waiver is that 43 out of 50 states have waiting lists for this waiver (Research and Training Center on Community Living 2013). Depending on the state, it could take years before a youth with ASD is eligible to receive a Medicaid Waiver. Further, eligibility for an HCBS waiver varies by state. In some states, an individual must have an intellectual

for an HCBS waiver varies by state. In some states, an individual must have an intellectual disability to be eligible for the waiver, whereas other states require individuals to have a developmental disability (i.e., eligibility is not limited to an intellectual disability) to be eligible for the waiver. Thus, depending on the state, individuals with ASD may not even be eligible for the waiver. This issue of varying eligibility can lead to inter- and intrastate variation. Specifically,

waiver. This issue of varying eligibility can lead to inter- and intrastate variation. Specifically, indi-viduals with ASD may be “locked in” to residing in states where they are eligible for Medicaid waiver services feeling they are unable to move to a state wherein they would not be eligible.

Need for Parent Advocacy Given that the onus is on parents to identify, access, and receive adult services for their off-spring with ASD, parents need advocacy skills. When parents are knowledgeable and advocate for their children, parents report that transition planning and the subsequent shift to adult services is more seamless (Timmons et al. 2004). Yet, many parents of individuals with developmental disabilities, including ASD, report struggling to advocate and to understand the adult

disabilities, including ASD, report struggling to advocate and to understand the adult service delivery system (Hetherington et al. 2010). As such, there is a strong need for parent advocacy training interventions about adult services. Although the research about parent advocacy is scant, the limited extant research indicates that parent advocacy interventions lead to increases in knowledge and perceived advocacy skills to navigate service delivery systems (Burke et al. 2016).

Current Knowledge Because the systems of services and supports for individuals with ASD who are moving from high school to adult life are very complex, it is impor-tant to understand what choices are available and how enrollment in some services may affect access to other services. To help in the decision-making process for parents of young adults with ASD in Tennessee, a comprehensive 12-week parent advocacy curriculum, entitled the Volunteer Advocacy Program – Transition (VAP-T), is used to

advocacy curriculum, entitled the Volunteer Advocacy Program – Transition (VAP-T), is used to train parents. Funding for this work was received from the National Institute of Mental Health. The training provides information on var-ious services and post-secondary, advocacy tips for parents of young adults with ASD, as well as a Letter of Intent form. The Letter of Intent is not a legal document; it is a record of information about the person with a disability. This includes family information

it is a record of information about the person with a disability. This includes family information and a record of the other topics found in the VAP-T curriculum. Included in this document would be: the services and programs that have been applied for in the past, the outcome of those applications, and the programs and services that are currently in place. The information found in a Letter of Intent is important for anyone supporting a family mem-ber throughout his or her life-course. The

Intent is important for anyone supporting a family mem-ber throughout his or her life-course. The docu-ment helps families plan and assess life-goals from year to year. Parents in the VAP-T are encouraged to complete a couple of pages of the Letter of Intent each week that coordinates with the topic covered. Notably, the Letter of Intent should be updated as changes occur and, other-wise, at least annually. The 12 sessions in the VAP-T curriculum are 2.5 h each in consecutive weeks and are held

annually. The 12 sessions in the VAP-T curriculum are 2.5 h each in consecutive weeks and are held in the evening to accommodate parents who often have active careers in this stage of family life. Because the sessions are offered during the dinner hour, a light meal or snack is provided. Each week’s agenda includes PowerPoint presentations by subject matter experts, activities for partici-pants, time for discussion among participants across three sites, and resources specific to the topic

time for discussion among participants across three sites, and resources specific to the topic covered and the physical location of partic-ipants. Participants and facilitators in all locations received a notebook containing all materials, activity sheets, and resources.

The group facilitator and subject matter experts are present with a group at the host site. In collaboration with distance sites, the training is provided using video conferencing, so that two other groups of parents can join remotely. Addi-tionally, if participants cannot attend at the host or remote sites then, on occasion, they can join from a home computer. All sessions are video recorded for later viewing if a participant misses a session. Support to the remote sites includes a meeting

for later viewing if a participant misses a session. Support to the remote sites includes a meeting before the start of the training to go over the

initiatives to develop and improve services (Wexler et al. 2013).  ## Comprehensive Reform  The majority of policies are enacted in relative isolation from one another, addressing a specific element (e.g., services or training or research or further policy development) perhaps within a spe-cific domain (health or education or community services). Occasionally, policies are enacted that intended to foment more comprehensive reforms. For example, the Combating Autism Act (CAA) signed into law in

foment more comprehensive reforms. For example, the Combating Autism Act (CAA) signed into law in 2006 (PL 109-416) and autho-rizing almost $1 billion in additional spending on autism represented the largest and most compre-hensive legislation focused on autism to date. CAA expanded a wide range of programs through a variety of federal agencies: research and coordi-nation at the National Institutes of Health (NIH), ASD awareness and surveillance activities at the Centers for Disease Control and

of Health (NIH), ASD awareness and surveillance activities at the Centers for Disease Control and Prevention (CDC), and training of health professionals within the Health Resources Services Administration to screen, diagnose (or rule out), and provide ASD interventions. CAA also promoted the develop-ment of programs to inform the public about ASD (including the National Autism Resource and Information Center), and redefined and enhanced the mandate of the Interagency Autism Coordi-nating

Information Center), and redefined and enhanced the mandate of the Interagency Autism Coordi-nating Committee.

## Future Directions  Social policy with respect to ASD is constantly evolving, with increased understanding of the needs of the population, changes in government leaders and structures, and shifting societal values.

## DSM-V  While the DSM-Vallows a DSM-IV diagnosis of ASD to be carried forward, it is unclear whether all individuals previously eligible for a diagnosis of Asperger syndrome or PDD-NOS under the DSM-IV would merit a DSM-V diagnosis of ASD. This may require changes to social policies to accommodate the needs of individuals rendered ineligible for specialized services and supports under this revised nomenclature.

## Improving and Increasing Services at the Local Level  Despite decades of research and advocacy, huge gaps persist between social policy at the national level and day-to-day practice at the local level. National programs like LEND, Learn the Signs Act Early, and the National Professional Develop-ment Center demonstrate innovations in raising awareness and training professionals, but the amount, accessibility, and quality of services still vary tremendously from one community to another, with

accessibility, and quality of services still vary tremendously from one community to another, with traditionally underserved populations being especially vulnerable. Though some advocates and policymakers have sought to prioritize more com-prehensive reforms in services, there is currently little chance for new federal programs addressing the services and supports needs of those on the spectrum, given the current national focus on reduc-ing the deficit and the size of the federal govern-ment.

given the current national focus on reduc-ing the deficit and the size of the federal govern-ment. Regardless, any substantial changes to services at the local level would have to be carefully coordinated with changes at the state and national level in training and policy, and guided by research focused on implementation. (Doehring 2013)

## The Identity of the ASD Community  It also remains unclear whether the autism com-munity can or should speak with a single voice. Perhaps some philosophical differences are inev-itable given the breadth of the autism spectrum; some persons with ASD require intensive, life-long services and supports associated with their developmental disabilities; and others who are able to live independently seek recognition and respect for the ways they are different. These differences often translate

seek recognition and respect for the ways they are different. These differences often translate into competing priori-ties, with some seeking more research on preven-tion or intensive treatment and others focused more on civil rights and services and supports for adults. Despite efforts to differentiate ASD from other disabilities, individuals with ASD and intellectual disability or ID may in fact have more in common with those whose ID uncompli-cated by ASD, than those with ASD but not ID

fact have more in common with those whose ID uncompli-cated by ASD, than those with ASD but not ID (Doehring 2013). This may indicate potential benefits from an alliance with the community of those with developmental disabilities. Interest and attention has also shifted over the past 5–10 years to encompass the needs and services required for adults with ASD, as the children identified in the “epidemic” beginning in the 1990s grow into adults who can no longer benefit from educational

in the “epidemic” beginning in the 1990s grow into adults who can no longer benefit from educational entitlements.

## Historical Background  There is a long and distinguished (and complex) history of work on research, clinical care, and training on autism and related disorders in the USA. Of course, the starting point for this discus-sion is the land breaking description, in 1943, of autism by Leo Kanner. His remarkably enduring, phenomenologically based description of autism highlighted key vulnerabilities in the area of social interaction and unusual environmental responsiveness and became the conceptual

the area of social interaction and unusual environmental responsiveness and became the conceptual basis for all subsequent definitions. At the same time, it also serves to mislead research in some ways, e.g., the use of the term autism suggested a possible conduit with schizophrenia, and his observation of high levels of parental educational attainment also suggested, to some, a possible contribution of experience to psychopathology. During the 1950s in particular, the emphasis on “blaming”

of experience to psychopathology. During the 1950s in particular, the emphasis on “blaming” parents (particularly mothers) took a decidedly unfortu-nate term, and only in the 1960s and particularly in the 1970s did scientific opinion begin to shift as the strong brain and genetic bases of autism began to be appreciated. The early work of the psychol-ogist and parent, Bernard Rimland, was key in this effort (Rimland 1964) as was the work in the 1970s suggesting the validity of autism (Kolvin

this effort (Rimland 1964) as was the work in the 1970s suggesting the validity of autism (Kolvin 1971) and its strong genetic and neurological basis (Folstein and Rutter 1977; Ornitz and Ritvo 1968) and the importance of structured treatment programs (Bartak and Rutter 1973). The pioneering work on the neurochemistry of autism (specifically on serotonin) by Daniel X. Freedman and colleagues was also important (Hanley et al. 1977) as was the early work on pharmacological treatment (Campbell et

also important (Hanley et al. 1977) as was the early work on pharmacological treatment (Campbell et al. 1971). Early confusion about the distinctiveness of autism complicated much of the early work, but a growing appreciation of its importance and validity as a condition stimulated a marked increase in research further facilitated by the official recognition of infantile autism in 1980 in the third edition of the Diagnostic and Statisti-cal Manual (DSM-III, APA 1980).

Several other events important in the history of autism program occurred in the 1960s with the organization of the National Autism Society in the USA (parallel to the organization of a corresponding institution in the UK). This group, founded in 1965, began to take a more active role in advocacy and support for both clinical working and training as well as research (NSAC 1978). Reorganized as the Autism Society of America, this group was involved in establishing legal man-dates for educational

Autism Society of America, this group was involved in establishing legal man-dates for educational services and for legislation at the state and national levels. In addition to the ASA, a number of other parent-founded founda-tions and advocacy groups have become active including the National Alliance for Autism Research (NAAR), Cure Autism Now (CAN), Autism Speaks, and Autism Science Foundation. Particularly during the 1990s, a critical body of work began to be available, and federal

Particularly during the 1990s, a critical body of work began to be available, and federal initiatives to support research began to increase. Notable programs included the Centers of Excellence for Programs in Autism (CPEA) led through the National Institute of Child Health and Human Development by then Director Dwayne Alexan-der and program officer Marie Bristol-Power were succeeded by support from multiple NIH insti-tutes. These included the Studies to Advance Autism Research and Treatment

from multiple NIH insti-tutes. These included the Studies to Advance Autism Research and Treatment (STAART) and Autism Center of Excellence Programs. The impact of these initiatives both on research and well-trained investigators has been enormous.

The recognition of autism as a brain-based disorder with a need for structured treatment pro-grams inspired a large body of work on behavioral and special educational interventions (Ferster 1972; Lovaas 1987). Unfortunately, schools often did not wish to provide services or felt unable to do so, and, as a result, parents were frequently involved in developing their own school programs, many of which continue to exist today – sometimes with changes in mission and orientation over the years.

which continue to exist today – sometimes with changes in mission and orientation over the years. This situation began to dramatically change with the advent of Public Law 94-142 and, along with other advances, has been associated with a significant change in long-term outcome (Howlin 2013). Many of the earliest programs developed for autism have evolved over the years – often mov-ing from center-based to more home- and community-based programs (see National Research Council 2001). The advent of

to more home- and community-based programs (see National Research Council 2001). The advent of programs combing behavioral and developmental approaches to treatment is particularly exciting as is the development of regional and statewide programs like Division TEACCH in North Caro-lina under the leadership of Eric Schopler and Gary Mesibov.

Another important historical development includes founding of the first journal devoted to autism in 1971 – the Journal of Autism and Devel-opmental Disorders. Originally called the Journal of Autism and Childhood Schizophrenia, Leo Kanner served as the first editor. Over the years, Kanner was succeeded by Eric Schopler and Michael Rutter, then by Gary Mesibov, and most recently by Fred Volkmar. A number of other journals with varying degrees of focus on autism have now appeared, and the advent

number of other journals with varying degrees of focus on autism have now appeared, and the advent of an increas-ing body of peer-reviewed research has undoubt-edly contributed to the significant increase in research in the field. A final important area to note has been the development of models of train-ing for individuals working as teachers and pro-fessionals in the field. This work has aimed to increase the quality and quantity of teachers, pro-fessionals, and others knowledgeable about autism

the quality and quantity of teachers, pro-fessionals, and others knowledgeable about autism and its treatment (Volkmar et al. 1988).

## Legal Issues, Mandates for Service  As noted, the passage, in 1975, of Public Law 94-142, now codified as IDEA (Individuals with Disabilities Education Act), was a watershed event in helping establish eligibility of children for school-based services. The intention of this act was to ensure that states and school districts ensure access to a free appropriate public educa-tion (FAPE) to children with disabilities of various types, all children with disabilities (Mandlawitz 2005). Both

children with disabilities of various types, all children with disabilities (Mandlawitz 2005). Both follow-up legislation and various state and, particularly federal, judicial decisions have clarified important aspects of this mandate. It is important to note that this law differs in impor-tant respects from another statute, the Americans with Disabilities Act of 1990, a law concerned with protecting individuals with discrimination based on a disability. While this act has some relevance to

individuals with discrimination based on a disability. While this act has some relevance to children, it becomes particularly important as students transition from high school to vocational and college programs where access to service is not an automatic right (although reasonable accommodation for a disability is) (Wolff et al. 2009).

## Overview of Current Treatments and Centers  The range and diversity of treatment programs and centers has increased dramatically in the past decade. As noted above, a range of programs have been developed, and a number now have substantial empirical research support with many now regarded as evidence based (Reichow et al. 2011). Over the past decade, there has been a growing awareness of the importance of peer exposure and mainstreaming in the acquisition of social skills (Tobin et al.

the importance of peer exposure and mainstreaming in the acquisition of social skills (Tobin et al. 2012). At the same time, there has been recognition that, in some cases, more intensive behavioral and educational sup-ports must be provided – sometimes in non-mainstream settings. Preparation of teachers and support personnel in schools has also been recog-nized as increasingly important (Wolery et al. 1993). As noted above, a range of models of intervention are now available and include both

et al. 1993). As noted above, a range of models of intervention are now available and include both strongly behaviorally based programs, those that have a more developmental orientation, others that might best be described as eclectic, and, finally, some that combine aspects of multiple approaches. As with other treatments in psychol-ogy and medicine, initial results of intervention programs sometimes are the most positive and are tempered by subsequent experience as programs move from

sometimes are the most positive and are tempered by subsequent experience as programs move from university-based clinical settings to more “real world” applications. A recurrent tension in treatment research has been the numerous interventions that technically fall in the no established category – these include complementary and alternative treatments (Volkmar and Wiesner 2009). In some areas of intervention research, there has not been a strong tradition of carefully controlled research so

of intervention research, there has not been a strong tradition of carefully controlled research so infor-mation is limited (but sometimes growing). In other areas, research is minimal but treatments are promising, and in yet other instances, treat-ments are said to be incapable of empirical proof – this latter category is of greatest concern particularly when a child is removed from treat-ments with some research bare and/or enrolled in programs that entail some actual risk of direct harm to

with some research bare and/or enrolled in programs that entail some actual risk of direct harm to the child.

## Overview of Research Directions  Most significant research programs within the country function within the context of college/university settings with a strong commitment to research and training. While there are some important obstacles to research (particularly treat-ment research), there has been a major expansion over the past decade with hundreds of peer-reviewed scientific papers appearing each year. Advances have been made in multiple areas including brain development and understanding

each year. Advances have been made in multiple areas including brain development and understanding of the social brain in autism (Insel and Fernald 2004; Dawson et al. 2005) of basic genetic mech-anisms (State and Levitt 2011) and potential brain effects/correlates of treatment (Voos et al. 2012). Research on potential pharmacological interven-tions has also significantly advanced and, recently, potential interventions that might impact social disability. The multisite study of risperi-done, now

interventions that might impact social disability. The multisite study of risperi-done, now approved as an effective intervention for agitation and irritability in autism, is an excel-lent example of such work (McCracken et al. 2002). At the same time, of course, some-times initially promising results are not replicated in subsequent studies. The dearth of intervention research, particularly focused on adults, remains a major area of concern. The support of research by both the government and

on adults, remains a major area of concern. The support of research by both the government and by a range of founda-tions (including Autism Speaks, Autism Science Foundation, and Simons Foundation) remains critically important.

## Social Policy and Training  Many advances in the on-going training of pro-viders (teachers, health-care professionals, and others) remain a top national priority. As noted above, efforts have been made to develop and implement curricula to enhance effective teaching methods in schools and classrooms (Harris et al. 2005). New approaches to training are now underway and include Internet-based services, publicly available materials, and privately pro-duced materials. Establishing the evidence

publicly available materials, and privately pro-duced materials. Establishing the evidence base of proposed treatments remains a priority as does the critical need for work on older individuals with autism.

## Definition  Shaping is an instructional approach that involves increasing the probability of a response through the gradual transformation of a current level of responding due to the successive approximation of a targeted class of behaviors. Shaping proce-dures involve the consideration of the current relevant repertoire, terminal goals, systematic approaches to the terminal goal, and maintenance (Goldiamond 1974). In the treatment of food selectivity, shaping can be used to increase the

(Goldiamond 1974). In the treatment of food selectivity, shaping can be used to increase the variety or amount of food consumed. This is accomplished by providing reinforcement for the target level of food acceptance determined by considering both the present level of food accep-tance and the terminal goal for acceptance and providing reinforcement contingent upon the dis-play of the target behavior. The level of food acceptance is increased over time until the child meets the terminal goal.

## Historical Background  Historically, shaping has been demonstrated to be effective both across and within response topog-raphies. For example, Isaacs et al. (1960) shaped the eye movements of an individual diagnosed with schizophrenia to lip movements, speech sounds, and ultimately recognizable words. Wolf et al. (1964) reinforced successive approxima-tions (i.e., touching eye glasses, picking up eye glasses, putting glasses up to face) to the end goal of wearing eye glasses in a

picking up eye glasses, putting glasses up to face) to the end goal of wearing eye glasses in a preschooler who was in danger of losing his sight if he did not wear his glasses. Rea and Williams (2002) used shaping to increase the duration of an individual’s breath holding prior to measuring exhaled carbon mon-oxide levels during smoking cessation treatment.

## Current Knowledge  Interventions used to increase the acceptance of new foods with children with autism commonly include one or more of the following components based on learning theory: escape extinction, dif-ferential reinforcement of alternative behavior (DRA), noncontingent reinforcement, and some form of systematic exposure or antecedent inter-vention (Chawner et al. 2019; Silbaugh et al. 2016). Multicomponent treatment packages that include escape extinction with DRA and demand fading

2016). Multicomponent treatment packages that include escape extinction with DRA and demand fading demonstrate effectiveness in treating food selectivity across multiple settings and with par-ents or therapists as implementers (Russo et al. 2019; Najdowski et al. 2010; Najdowskil et al. 2003; Silbaugh et al. 2016). For example, Russo et al. (2019) increased the variety of foods con-sumed across all food groups for two adolescent males with autism by providing antecedent choice for both the

all food groups for two adolescent males with autism by providing antecedent choice for both the preferred and nonpreferred target food, implementing escape extinction of inappro-priate mealtime behavior and systematically increasing the number of bites and variety of food presented in order to meet criterion for rein-forcement. However, given that DRA is indicated as a preferred treatment by caregivers to treat food selectivity compared to escape extinction (Vazquez et al. 2019), it is not

caregivers to treat food selectivity compared to escape extinction (Vazquez et al. 2019), it is not surprising that systematic exposure techniques such as demand fading and shaping with DRA are evaluated more often than escape extinction to increase the variety of foods consumed in children with ASD (Chawner et al. 2019). Effective shaping interven-tions that do not include escape extinction gener-ally include a multistep hierarchy of graduated exposure that the child moves up as he or she

gener-ally include a multistep hierarchy of graduated exposure that the child moves up as he or she meets criteria and moves down as a result of consecutive errors or engaging in refusal behav-iors. Response requirements in hierarchical expo-sure vary from beginning with tolerating the food in the same room (Tanner and Andreone 2015) to touching the target food with the hands or lips (Hodges et al. 2017; Penrod et al. 2012) and ultimately conclude with swallowing or consum-ing the food. Tanner

2017; Penrod et al. 2012) and ultimately conclude with swallowing or consum-ing the food. Tanner and Andreone (2015) evalu-ated a 12-step hierarchy with a child with food selectivity and ASD. The hierarchy gradually increased the demands over a span of 9 months from tolerating target foods in the same room to consuming the target foods and resulted in accep-tance of 50 previously refused foods.

Luiselli et al. (2005) increased the amount of milk a young girl with autism drank by gradually increasing the amount she was required to drink and providing reinforcement contingent upon consumption of the liquid. Koegal et al. (2012) increased food variety in three children with autism who had selective diets by using a system-atic hierarchical sequence (i.e., seven-level hier-archy) and provided individualized reinforcement upon the child’s mastery of required steps. This resulted in

provided individualized reinforcement upon the child’s mastery of required steps. This resulted in successful expansion of food repertoire among all three participants. Hodges et al. (2017) used differential reinforcement and shaping to increase the variety of foods accepted by children with autism who demonstrated significant feeding inflexibility. They were introduced to four new food items via hierarchical exposure, which involved systematically increasing the desired response with the food

hierarchical exposure, which involved systematically increasing the desired response with the food item. Following the inter-vention, all participants accepted the targeted foods.

## Future Directions  More research is needed to identify interventions with long-term therapeutic effects, particularly for increasing variety of foods accepted (Bandini et al. 2017; Chawner et al. 2019; Koegal et al. 2012). Long-term follow-up measurements of observed treatment outcomes may help better identify treatments best suited for long-term gen-eralized therapeutic effects. Furthermore, some individuals may continue to exhibit feeding chal-lenges throughout the lifespan. Indeed, in

some individuals may continue to exhibit feeding chal-lenges throughout the lifespan. Indeed, in one longitudinal study of children with ASD, while food refusal improved over time, there were no increases in the number of foods accepted 7 years after the initial measurement point (Bandini et al. 2017). However, in a recent systematic review, only half of the included articles (n ¼ 36) included follow-up measures (Chawner et al. 2019). With-out replicated demonstrations of long-term results,

follow-up measures (Chawner et al. 2019). With-out replicated demonstrations of long-term results, confidence in interventions assumed to be efficacious is weakened (Chawner et al. 2019). There is also a need for greater evaluation of the social validity of commonly used feeding intervention components. In particular, caregiver ratings of acceptability of interventions used are necessary, because caregivers are the most com-mon natural implementers of mealtime interven-tion strategies outside of

are the most com-mon natural implementers of mealtime interven-tion strategies outside of treatment sessions (Vazquez et al. 2019). It is also possible that more intrusive interventions may be viewed as more acceptable if maladaptive behaviors are more severe (Vazquez et al. 2019). Finally, because of the prevalence of multi-component interventions, future researchers may evaluate individual strategies that are effective through component analyses (Chawner et al. 2019; Najdowski et al. 2010).

that are effective through component analyses (Chawner et al. 2019; Najdowski et al. 2010). Component analyses may help in identifying mechanisms of behavior change, thus streamlining the iterative intervention process (Najdowski et al. 2010). Alternatively, component analyses that may also illuminate multicomponent interventions are nec-essary because of the highly complex nature of feeding behaviors (Chawner et al. 2019).

## Name and Degrees  Studies in History of Art and Psychology, Universität des Saarlandes, Saarbrücken, Germany. Diploma course in Abnormal Psychology (equivalent to Clinical Psychology training), Institute of Psychiatry, London, UK. PhD “Pattern detection in normal and autistic children”, supervised by Neil O’Connor and Beate Hermelin, University of London, UK.

## Major Appointments (Institution, Location, Dates)  MRC Scientific Staff (1968-2006), at the MRC Developmental Psychology Unit (DPU, 1968-1982) and then the MRC Cognitive Develop-ment Unit, London, UK, (1982-1998) Deputy Director, Institute of Cognitive Neurosci-ence, University College London, 1998-2006 Visiting professor, Arhuus University, Denmark, 2007-2015 Emeritus Professor of Cognitive Development, Institute of Cognitive Neuroscience, Univer-sity College London, 2006-present.

## Major Honors and Awards  Prix Jean Nicod, jointly with Chris Frith, 2014 William James Fellow Award, Association for Psychological Science, 2013 Honorary Fellow British Science Association, 2013 Honorary Dame Commander of the Order of the British Empire., 2012 Honorary Degree Cambridge University, 2012 Foreign Associate of the National Academy of Sciences, Section 52 - Psychology and Cogni-tive Sciences, 2012 Centre for Cognitive Science University of Turin: Mind and Brain Prize 2010

Sciences, 2012 Centre for Cognitive Science University of Turin: Mind and Brain Prize 2010 Experimental Psychology Society 38th Sir Frederic Bartlett Lecture 6th January 2010 European Latsis Prize, jointly with Chris Frith, 2009 British Psychological Society, Research Board Life Time Achievement Award, 2009 Elected Member of the German Academy of Sci-ences Leopoldina, 2008 Honorary Fellow Newnham College Cambridge, 2008 UKRC Women of Outstanding Achievement in SET, 2008 Foreign Member of the

College Cambridge, 2008 UKRC Women of Outstanding Achievement in SET, 2008 Foreign Member of the Royal Society of Arts and Sciences in Göteborg, 2008 Lifetime Achievement Award, International Society for Autism Research (INSAR), 2007 Samuel T. Orton Award International Dyslexia Association, 2007 Elected Honorary Fellow of the British Psycho-logical Society, 2006 President of the Experimental Psychology Society, 2006-08 Fellow of the Royal Society, 2005-07-09 Burghölzli Award, University of

Psychology Society, 2006-08 Fellow of the Royal Society, 2005-07-09 Burghölzli Award, University of Zuerich, Deparment of Psychiatry Robert Sommer Award, University of Giessen, Medical School Laurea Honoris Causa, Palermo University, 2004 Jean-Louis Signoret Prize of the Ipsen Founda-tion, 2003 Fellow of the British Academy, 2001 Fellow of the Academy of Medical Sciences, 2001 Honorary Doctorate, University of Göteborg, Sweden, 1998 Member of the Academia Europaea, 1992 The President’s Award of

University of Göteborg, Sweden, 1998 Member of the Academia Europaea, 1992 The President’s Award of the British Psychologi-cal Society for distinguished contributions to psychological knowledge, 1990

## Landmark Clinical, Scientific, and Professional Contributions  Having joined her PhD supervisors Neil O’Connor and Beate Hermelin in pioneering the cognitive experimental study of autism, Uta Frith’s first landmark contribution was the influ-ential “Theory of Mind” deficit account, devel-oped and tested with fellow CDU scientist Alan Leslie and their then-PhD student, Simon Baron-Cohen. Their empirical paper showing that most children with autism failed a simple false belief test (Baron-Cohen

paper showing that most children with autism failed a simple false belief test (Baron-Cohen et al. 1985) has since been cited more than 2,500 times (ISI WoS) and launched decades of research into “mentalizing.” A decade later, Uta and Chris Frith were the first to use functional neuroimaging to investigate the brain basis of typical and atypical mentalizing, work for which they later received the prestigious Jean Nicod Prize. Frith’s scholarly yet accessible 1989 book, Autism: Explaining the

prestigious Jean Nicod Prize. Frith’s scholarly yet accessible 1989 book, Autism: Explaining the Enigma, explained mentalizing deficits in autism to a wider audience and also introduced the concept of weak “central coherence”, reduced global and increased local processing, revealed in superior performance on, e.g., Block design, and embedded figures tests, as shown in Frith’s studies with her PhD student Amita Shah. Frith can be credited with being the first scientist to suggest that more can be

student Amita Shah. Frith can be credited with being the first scientist to suggest that more can be learnt about autism by studying assets than by studying deficits. In 2010 she edited a book Autism and Talent with past PhD student and long-time col-laborator, Francesca Happé. Frith has been a major advocate for cognitive theories of autism (and dyslexia), and her work on Causal Modelling, with John Morton, explained the importance of distinguishing levels of expla-nation: biological, cognitive

Morton, explained the importance of distinguishing levels of expla-nation: biological, cognitive (which includes affective), and behavioral – with environmental interplay possible at each level. Her other notable contributions to autism sci-ence include pioneering work on education and the brain (on which she published a book, The Learning Brain, with Sarah-Jayne Blakemore in 2005), and autism in history (including her book on the historical case of Hugh Blair, with Rab Houston in 2000). Frith

history (including her book on the historical case of Hugh Blair, with Rab Houston in 2000). Frith also provided the first English translation of Hans Asperger’s 1944 paper, in her influential 1991 edited book, Asperger Syndrome. Uta Frith is also well known as a supporter of women in science, having mentored and championed many female scientists, and founded the group “Science and Shopping.” She is often in the media and has presented several science pro-grams including the BBC’s Horizon.

## Short Biography  Born Uta Aurnhammer in 1941 in Rockenhausen, Uta Frith grew up in Kaiserlautern, Germany. It was not until 1964 that she came to England, to the Institute of Psychiatry (IoP) in London, where she met her future husband and longtime collabo-rator, Chris Frith, and trained as a clinical psy-chologist. Originally planning a PhD on OCD, she became fascinated by autism and was delighted to find the authors of a key experimental paper she was reading were on the IoP faculty. Neil

to find the authors of a key experimental paper she was reading were on the IoP faculty. Neil O’Connor and Beate Hermelin saw her ability at once and took her on first as a PhD student and then, even before her thesis was submitted, as a research scientist in the newly established MRC Developmental Psychology Unit. Uta remained an MRC staff scientist for more than 35 years, helping to choose the other faculty at the subse-quent MRC Cognitive Development Unit. It was at the CDU that the “Theory of

faculty at the subse-quent MRC Cognitive Development Unit. It was at the CDU that the “Theory of Mind” deficit account of autism was conceived and tested. At the same time, Uta was at the forefront of cogni-tive studies of dyslexia – and she has maintained her fascination with both types of neurodiversity throughout her career. When the CDU closed in 1998, Uta became Deputy Director of the new Institute of Cognitive Neuro-science at UCL – which neighbors the Wellcome Trust Functional Imaging

Institute of Cognitive Neuro-science at UCL – which neighbors the Wellcome Trust Functional Imaging Laboratory in Queen’s Square, where with Chris Frith and other colleagues she conducted the first functional neuroimaging studies of Theory of Mind. She remains an emeritus professor at UCL and is cur-rently working on book projects with Chris, including a graphic novel about social cognition. Uta is active in public understanding of science through her media work and is a champion for gender

is active in public understanding of science through her media work and is a champion for gender equality in science; she is currently chair of the Royal Society’s Diversity Committee. Apart from a vast array of landmark papers, and six books, Uta is notable for her legacy in terms of nurturing the next generations of scien-tists: her wide and long-standing collaborations, her generous support for students and junior col-leagues, and the large and growing group of researchers who are proud to

students and junior col-leagues, and the large and growing group of researchers who are proud to count themselves as the academic children or grandchildren of Uta Frith.

## Definition  The term “utilitarian attention” is intended to describe a style displayed by persons with autism spectrum disorders (ASD) across various compo-nents of attentional processing. The term utilitar-ian, based on the root word utility, implies a functional significance as would be the case when attention occurs in ways and is guided by considerations that lead to its most efficient use. The implementation of the utilitarianism may be manifested in different ways such as the unique

The implementation of the utilitarianism may be manifested in different ways such as the unique processing of stimuli and information that imparts meaning or guidance in a specific context or for a specific task, and by behavior that is driven by data or task requirements rather than general heu-ristics or information in the environment that may be of increased interest or relevance to others but incidental to the task at hand. This notion of utilitarian attention represents an extension of

but incidental to the task at hand. This notion of utilitarian attention represents an extension of earlier empirically based strength-oriented conceptualizations in the areas of visual search (O’Riordan et al. 2001), perception (O’Riordan and Plaisted 2001; Plaisted et al. 1998; Russo et al. 2012), and the iterations of the enhanced perceptual functioning model (Mottron and Burack 2001; Mottron et al. 2006), all of which stand in contrast to the more common emphasis on deficits, including in

et al. 2006), all of which stand in contrast to the more common emphasis on deficits, including in the area of attention. Thus, the essential premise of the notion of utilitarian attention is that attention is not inher-ently deficient among persons with ASD and may even be more efficient and effective in certain cases. Utilitarian attention is also consistent with the contemporary notion that the identification of alternative styles, biases, and ways of being is essential to understanding

the identification of alternative styles, biases, and ways of being is essential to understanding attentional functioning among both persons with ASD (Burack et al. 2016) and the more general population (Burack et al. 2017; Ristic and Enns 2015). In this context, the emphasis on utilitarian attention is not simply about assessing whether attentional abilities are better or worse than that which is evident among comparison groups of appropriately matched per-sons from the neurotypical population,

evident among comparison groups of appropriately matched per-sons from the neurotypical population, but rather is meant to highlight styles, biases, and ways of attending that are unique to persons with ASD and the ways that they affect the efficiency of atten-tion. This framework is consistent with the recently posed question about the attentional pro-cessing of persons with ASD, “How I attend - not how well do I attend” (Burack et al. 2016).

## Historical Background  The term “utilitarian attention” was initially used by Brodeur et al. (2018) in the title and the inter-pretation of the findings of a study of visual attention in which the participants (children) with ASD seemed to benefit from the presence of nontarget stimuli in the visual field that appeared to impede the performance of a compar-ison group of mental age matched typically devel-oping participants (children). It was intended to be understood within the context of the

devel-oping participants (children). It was intended to be understood within the context of the key compo-nents of both classic and contemporary conceptu-alizations of attention. The concept of attention is a longstanding and relatively intensively studied construct. Its formal scientific conceptualization is usually dated back to William James’ iconic and oft-cited observa-tion that “Everyone knows what attention is. It is the taking possession by the mind, in clear and vivid form, of one out

what attention is. It is the taking possession by the mind, in clear and vivid form, of one out of what seem several simul-taneously possible objects or trains of thought. Focalization, concentration, of consciousness are of its essence” (James 1890, pp. 403–404). Iron-ically, James’ apparent attempt to highlight the simplicity and obviousness of the concept of attention also serves to underscore that attention is far from a monolithic construct as it involves a multiplicity of components that

that attention is far from a monolithic construct as it involves a multiplicity of components that are complexly intertwined with each other and in relation to the individual and the world around them.

## Current Knowledge  As the study of attention, and its development through the life span, has grown in the century since James’ seminal observation, several founda-tional issues have emerged as central to any rele-vant framework. One, attention is not anything tangible, but rather is a construct based on observed behavior that has been forwarded to facilitate the understanding of the complex, mul-timodal, and ever-changing world in which we live and of the abundant dynamic information,

mul-timodal, and ever-changing world in which we live and of the abundant dynamic information, stimuli, and events within. Two, attention is an umbrella term used for many different, albeit con-ceptually related, functions or components that are delineated and categorized differently across the many different conceptualizations or frame-works of attention. Three, unique developmental trajectories can be identified in relation to the demands, efficiency, and effectiveness for each of these

can be identified in relation to the demands, efficiency, and effectiveness for each of these attention components. Four, the real-world demands on attention processes can change in meaningful ways in relation to the individual’s age, environment, and transactions with the envi-ronment. Five, attentional processes have been identified within and across each of the modalities and these processes can operate in concert with and/or in competition with each other. Six, atten-tion is captured by and

operate in concert with and/or in competition with each other. Six, atten-tion is captured by and directed to events, stimuli, and pieces of information that move in space and change in time. Seven, the context of the attention task influences its difficulty as other concurrent cognitive functions may either enhance or detract from performance. In contradistinction to James’ point of “Every-one knows what attention is,” these points are intended to highlight the increasing levels of nuance and

what attention is,” these points are intended to highlight the increasing levels of nuance and complexity in providing some general understanding of attention and the difficulty in articulating any single characteristic of attention that can be applied universally across the concep-tualization of attention and its components for all stimuli or information, across different settings, at different developmental stages. This level of deconstruction of the notion of attention is inevi-tably magnified

stages. This level of deconstruction of the notion of attention is inevi-tably magnified in considering its manifestation among persons with ASD for whom any type of functioning might vary considerably in relation to the vast differences within the population with regard to developmental level of functioning, level of symptomatology, and etiology. Thus, the claim for utilitarian attention is not meant as nec-essarily universal with regard to all components of attention nor for all persons with

meant as nec-essarily universal with regard to all components of attention nor for all persons with ASD, but rather as insight into unique, and often unexpected, find-ings of strengths or patterns of performance and as a framework for interpreting the biases and styles of processing displayed on certain tasks.

Although the notion of utilitarian attention among persons with ASD is recent and has not yet been tested directly, its different manifesta-tions appear to be supported by findings from a range of studies on various components of attend-ing. The Brodeur et al. (2018) study was designed to assess the visual filtering component of atten-tion, which is typically depicted as the process of focusing on some stimulus or event while ignor-ing, or filtering, other potentially distracting non-target

on some stimulus or event while ignor-ing, or filtering, other potentially distracting non-target information in the environment. The experimental paradigm was a flanker task, com-monly used in studies of filtering, in which par-ticipants are required to respond to the identity of a target stimulus that is presented between flanker stimuli which, depending on their physical attri-butes and location in relation to the target stimu-lus, appear to serve as distractors that can impede performance as

in relation to the target stimu-lus, appear to serve as distractors that can impede performance as indicated by reaction times (RTs) and/or error rates. In their task that was adminis-tered to a group of children with ASD and a group of typically developing (TD) children matched at a mental age (MA) level of approximately 7.4 years, Brodeur et al. instituted both spatial and temporal manipulations. They presented the target stimulus in the middle of a computer screen and flanked it with

They presented the target stimulus in the middle of a computer screen and flanked it with nontarget stimuli (i.e., flankers) that were presented 180° to the right or the left of the target at three different spatial dis-tances (2.32, 6.92, and 13.78 visual degrees) and, in the most novel aspect of the paradigm, with four conditions of temporal delays (0, 150, 300, and 450 ms) in the onset between the presen-tation of the target and the flankers. With regard to the spatial effect, the TD children

the presen-tation of the target and the flankers. With regard to the spatial effect, the TD children showed the expected distracting effects as their RTs were slower in the conditions in which the flankers were at closer proximity to the target, but appar-ently unaffected in the condition in which the distractors were considerably more distant from the target. With regard to the temporal effect, the performance of these participants appeared to be unaffected by the presence or lengths of the

the performance of these participants appeared to be unaffected by the presence or lengths of the tem-poral delays between the onset of the target and flankers. In comparison, the participants with ASD displayed a quite different pattern of perfor-mance. They showed no spatial effect in relation to distance with similar RTs for the three condi-tions of flanker distances, but displayed effects of the temporal relationship with faster RTs in the conditions in which the distracters appeared either

temporal relationship with faster RTs in the conditions in which the distracters appeared either simultaneously with the target or very briefly after it (150 ms as opposed to 300 or 450 ms).

Based on these findings, Brodeur et al. con-cluded that the children with ASD were able to utilize the flankers in the simultaneous and 150 ms conditions in such a way as to create a window of attention that facilitated their focus on the target, thereby speeding up their RTs. Thus, rather than being distracted by the flanker stimuli, as appeared to be the case with the TD participants, the participants with ASD appeared to adaptively utilize the spatial location of the flankers as cues to help

with ASD appeared to adaptively utilize the spatial location of the flankers as cues to help focus attention on the target stimulus, regard-less of the distance of the flankers from the target when the target and flanker stimuli were closely linked temporally. This apparently unique pattern, in which the participants with ASD were able to benefit from the flanker stimuli, was interpreted by Brodeur et al. as indicative of utilitarian attention. Brodeur et al.’s case for utilitarian attention based

al. as indicative of utilitarian attention. Brodeur et al.’s case for utilitarian attention based on the ability to use the flankers as cues is consistent with earlier findings by Burack (1994) on another filtering task that also involved a flanker paradigm. In that study, Burack (1994) found that only a group of low functioning per-sons with autism, as compared to two groups of mental age (MA)-matched individuals with intel-lectual disability and a group of MA-matched typically developing persons,

individuals with intel-lectual disability and a group of MA-matched typically developing persons, showed enhanced RTs in identifying a target stimulus that appeared in the middle of the screen in conditions with no distractors when a visual window was super-imposed around the middle of a screen. Other evidence from the study indicated that the persons with ASD were generally less efficient than the other groups in modulating, or adjusting, the attentional lens to focus on the target as their

the other groups in modulating, or adjusting, the attentional lens to focus on the target as their focus of attention was distributed more broadly and extended out farther from the target. Thus, as the presence of a window was only associated with improvements in their performance, the per-sons with ASD seemed to have imposed a utili-tarian approach to attending by using the window as an external facilitator to effectively narrow the lens, or width of spatial attention, a task which otherwise

facilitator to effectively narrow the lens, or width of spatial attention, a task which otherwise seemed to be difficult for them. Within this context, the findings from the Brodeur et al. study appear to provide further evidence of the facilitative effects of a spatial framing cue even when comprised of discrete stimuli, such as the flankers, rather than a complete framing of the target. This all suggests that one aspect of the utilitarianism in attention might involve some way of cognitively

suggests that one aspect of the utilitarianism in attention might involve some way of cognitively interpreting, processing, or manipulating nontarget stimuli in the environment such that they uniquely serve as beneficial cues to persons with ASD, although they may be delete-rious to the performance of other persons.

Iarocci et al. (2006) suggested a second type of utilitarian attention when they concluded that the children with high functioning ASD showed a more “data -driven” approach as compared to both verbal and nonverbal MA-matched groups of typically developing children in their two-experiment study of visual search for global and local stimuli. In the first experiment, the children with ASD were as able as the TD participants to access targets at either level of visual structure on a visual search

as the TD participants to access targets at either level of visual structure on a visual search task in which the effects of struc-tural bias were manipulated to favor access to either the local or global targets. However, group differences were noted in the second experiment in which a structural global bias was pitted against an implicit task bias that favored the local level, with the probabilities that target would appear at the local level varying from unlikely (30%) to likely (70%) within

that target would appear at the local level varying from unlikely (30%) to likely (70%) within the blocks of trials. The chil-dren with ASD displayed similar levels of sensi-tivity to the biasing manipulations for both the global and local targets, while also showing the smallest task independent bias in favor of global targets. Iarocci et al. argued that the sensitivity to bias shown by children in this experiment cannot be interpreted as a response bias, as the biasing manipulation only

in this experiment cannot be interpreted as a response bias, as the biasing manipulation only affected the likelihood that the target stimulus would appear at either global or local level, and did not affect the likelihood of the actual response. Rather, Iarocci et al. concluded that the sensitivity to bias shown by the children with autism indicated a unique enhanced ability to overcome, or ignore, task independent biases to either the local or the global level of processing that typically

task independent biases to either the local or the global level of processing that typically interfere with the performance of other persons.

In another study in which the findings that can be interpreted as reflecting “data-driven” behav-ior, Ristic et al. (2005) challenged the prevailing notion that persons with ASD were unable, or at least severely impaired in the ability, to follow eye gaze. In doing so, they contrasted the notion of the “social power” of eye gaze in the everyday func-tioning of typically developing (TD) persons that leads to the inherent following of eye movement in all faces, even clearly unrealistic faces such

leads to the inherent following of eye movement in all faces, even clearly unrealistic faces such as schematic ones, with a pattern of responding among persons with ASD both that indicated an ability to follow and make meaning of eye gaze and that is inherently more efficient, or cost effec-tive, as it is only used when the data from the environment suggests its utility. Ristic et al. (2005) presented high functioning adolescents and young adults with ASD and a group of chronological age- and

high functioning adolescents and young adults with ASD and a group of chronological age- and IQ-matched typ-ically developing participants with a centrally presented schematic face whose pupils could move from side to side to cue the location of a target presented to its right or left. This compar-ison involved two conditions – a nonpredictive condition in which the cue only predicted the location of the target on 50% of trials and a predictive gaze condition in which the cue direc-tion

location of the target on 50% of trials and a predictive gaze condition in which the cue direc-tion predicted the location of the target 80% of the time. As expected both from previous evi-dence indicating the salience of eyes in the gen-eral population and from the narrative of eye gaze following deficits among persons with ASD, the TD participants, but not those with ASD, displayed faster RTs for congruent cue-target trials than for incongruent cue-target trials in the nonpredictive condition.

congruent cue-target trials than for incongruent cue-target trials in the nonpredictive condition. However, any support for a deficit was dispelled in the predic-tive condition on which the participants with ASD, like the TD participants, displayed faster RTs for congruent cue-target trials than for incongruent cue-target trials in the predictive condition, suggesting that both groups used the cue in an advantageous way to guide their antic-ipation of where the target would appear. These findings

in an advantageous way to guide their antic-ipation of where the target would appear. These findings indicate an essential difference in the utility of attention between persons with ASD and their neurotypical peers, whose attending appeared to be governed by a heuristic that pri-oritizes social information. Whereas eye gaze automatically captured the attention of the TD participants regardless of whether it provided any information about the subsequent location of a target, the participants

of whether it provided any information about the subsequent location of a target, the participants with ASD appeared to display a more utilitarian approach to attend-ing by only following eye gaze in situations in which it was useful to successful task completion. In a similar study in which eye-tracking tech-nology was used to monitor attention to eyes and faces in both an object search and gaze-reading task, Del Bianco et al. (2018) found that propor-tional looking time to faces was

and gaze-reading task, Del Bianco et al. (2018) found that propor-tional looking time to faces was task-dependent among a group of adults with ASD but not for a comparison group of TD adults. Although the groups displayed similar proportions of first fixa-tions to the faces, only the participants with ASD looked at faces more when it was most beneficial to do so; in the gaze-reading task. Del Bianco et al. speculated that the performance of the persons with ASD might reflect less efficient

Bianco et al. speculated that the performance of the persons with ASD might reflect less efficient attending, although the increased task-dependent behavior certainly suggests a utilitarian approach to attend-ing, especially in the context of the focus on eyes and faces which is so often cited as a source of deficit among persons with ASD. Joosten et al. (2016) similarly examined gaze and visual search strategies in children with ASD and neurotypical children using a video of a magic trick as the

strategies in children with ASD and neurotypical children using a video of a magic trick as the to-be-attended event. Eye movements were recorded toward both the gaze of the magi-cian and other objects in the video during the initial viewing of the trick, and again after the participants were informed that magicians use gaze-aversion tactics to draw the audience’s atten-tion away from specific areas to ensure the success of the trick. Consistent with the argument that the attention of persons

to ensure the success of the trick. Consistent with the argument that the attention of persons with ASD is less governed by general heuristics (e.g., social information priori-tization), the a priori attention of the neurotypical children was characterized by a bias to attend to gaze, whereas the children with ASD showed no such search pattern as they showed little prefer-ence for eyes or gaze-cued stimuli. However, after learning about the magician’s gaze aversion tactic, both groups adjusted

stimuli. However, after learning about the magician’s gaze aversion tactic, both groups adjusted their attentional style to look less at eyes and gaze-cued objects. In addition to highlighting that persons with ASD, like TD per-sons, can use instructions to adopt an optimal attention strategy to increase the likelihood of successful task performance, these findings are further support for the notion that the attention of persons with ASD is less influenced than that of TD persons by social

notion that the attention of persons with ASD is less influenced than that of TD persons by social stimuli that have been shown to impede task performance in some circumstances.

## Future Directions  As is the case with any construct, identifying the source of utilitarian attention, which is found among at least some persons with ASD on at least some types of tasks, is a conceptual exercise that can involve many possibilities. The enhanced perceptual functioning model (Mottron and Burack 2001; Mottron et al. 2006), based on extensive evidence of superior visual and auditory sensory capacity among per-sons with ASD, provides one foundation for understanding why the

sensory capacity among per-sons with ASD, provides one foundation for understanding why the attentional processing of persons with ASD might be particularly utilitar-ian. As perceptual processes are thought to tem-porally precede those of attention and other aspects of cognition, faster or better perception might pave the way for more economical or efficient “downstream” processing, including that of attention. Alternatively, Pellicano and Burr (2012) offer a Bayesian account in which perception

of attention. Alternatively, Pellicano and Burr (2012) offer a Bayesian account in which perception is based on the interplay between basic sensory capacities and prior probabilities, based on prior knowledge about the world. Among persons with ASD, perceptual input may be interpreted more accurately due to atten-uated Bayesian priors, referred to as “hypo-priors,” that lead to perception that is less biased by accrued experiences with the perceptual envi-ronment. Such a model is consistent

is less biased by accrued experiences with the perceptual envi-ronment. Such a model is consistent with utili-tarian attention in that perception, presumably related to attention components, is governed less by heuristics and more by data-driven or current, task specific, utilitarian information. Commensurate with contemporary perspec-tives in which the emphasis is on individual styles, experiences, motivation, background knowledge, needs, and interests that affect attention with spe-cific

motivation, background knowledge, needs, and interests that affect attention with spe-cific information in particular contexts (Burack et al. 2016; Krauzlis et al. 2014; Ristic and Enns 2015), the hypothesized link between engineering and ASD and the related notion that persons with ASD show advanced levels of folk physics (Baron-Cohen et al. 1997; Wheelwright and Baron-Cohen 1998) suggest that persons with ASD might be uniquely able to benefit from the abilities both to construct facilitative

persons with ASD might be uniquely able to benefit from the abilities both to construct facilitative visual cues and efficiently utilize task-relevant data in the environment while ignoring other information or events that distract others. A first step in future scholarship would be to revisit and reassess key findings from the litera-ture on attention among persons with ASD, espe-cially cases of particular strengths, in order to identify other examples of attending that can be interpreted as

particular strengths, in order to identify other examples of attending that can be interpreted as utilitarian. These instances should be examined within the contexts of the various theoretical perspectives that might explain utili-tarian attention. The information from this con-ceptual exercise will inform the quest to delineate the environmental settings, attentional tasks, and individual characteristics that are most likely to elicit utilitarian attention. With this type of infor-mation,

that are most likely to elicit utilitarian attention. With this type of infor-mation, researchers and practitioners will be able to facilitate the development of educational and vocational opportunities for persons with ASD that allow them to benefit from their particularly unique ways of attending to and processing infor-mation in the world around them.

## Definition  Importance of repeated screening for autism spec-trum disorder (ASD), following a negative (i.e., no risk) screening, in order to maximize identifi-cation of toddlers with ASD and other neurodeve-lopmental disorders.

## Historical Background  Early diagnosis of ASD, followed by targeted inten-sive intervention services, improves children’s out-comes (Anderson et al. 2014; MacDonald et al. 2014; Rogers and Vismara 2008). Despite the fact that ASD symptoms typically emerge within the first 1–2 years of life and caregivers often report concerns early in their children’s development (Crais et al. 2014; Hazlett et al. 2017; Maestro et al. 2005; Ozonoff et al. 2010; Zwaigenbaum et al. 2005), a large proportion of

al. 2017; Maestro et al. 2005; Ozonoff et al. 2010; Zwaigenbaum et al. 2005), a large proportion of children are not diagnosed until they are 3 or 4 years old (Centers for Disease Control and Prevention [CDC], 2018). Routine screening at well-child care visits reduces children’s age at diagnosis and mitigates discrepan-cies in age at diagnosis for children of various racial and socioeconomic status backgrounds (Herlihy et al. 2014). Accordingly, the American Academy of Pediatrics (AAP)

status backgrounds (Herlihy et al. 2014). Accordingly, the American Academy of Pediatrics (AAP) recommends screening all chil-dren for ASD at 18 and 24 months (Duby et al. 2006; Johnson and Myers 2007). Despite the rec-ommendation to screen at both time points, and the clear benefits of screening, many pediatricians do not practice repeated screening. Indeed, barriers including a lack of time and limited staff to imple-ment screening procedures prohibit screening in many pediatrician practices

limited staff to imple-ment screening procedures prohibit screening in many pediatrician practices and are likely to make repeated screening particularly challenging (Arunyanart et al. 2012; Zuckerman et al. 2013). As well, caregivers may have reservations about repeating screening after their children recently screened negative. As data increasingly supports the ability to diagnose ASD earlier (Pierce et al. 2019), as well as the importance of early detection and intervention, it is important

et al. 2019), as well as the importance of early detection and intervention, it is important to identify the opti-mal screening time points that enable detection of the largest number of children who would benefit from intervention.

## Current Knowledge  To our knowledge, only one manuscript has eval-uated the utility of the AAP’s recommendation to screen for ASD at 18 and 24 months (Dai et al. 2019). However, researchers have compared the benefits of 18- and 24-month screening as well as the positive predictive value (PPV) of screening at each age. Symptoms of ASD typically emerge by 18 months, and a diagnosis at that age is consid-ered stable (Ozonoff et al. 2015). In light of liter-ature suggesting the importance of

is consid-ered stable (Ozonoff et al. 2015). In light of liter-ature suggesting the importance of starting intervention as early as possible, during a time of brain plasticity, the AAP encourages routine screening for ASD when children are 18 months of age (Duby et al. 2006; Johnson and Myers 2007). The Modified Checklist for Autism in Toddlers, Revised, with Follow-Up (M-CHAT-R/F) is the most widely used screener for ASD, has been translated to over 40 languages, and is recommended by the AAP.

used screener for ASD, has been translated to over 40 languages, and is recommended by the AAP. It is validated for use in children as young as 16 months (Robins et al. 2014). Still, approximately 20–40% of children with ASD appear to either develop typically or exhibit very mild symptoms until their second year of life, but then experience either a regression of skills or a later emergence of ASD symptoms (Barton et al. 2012; Gupta et al. 2007). In light of this develop-mental trajectory,

ASD symptoms (Barton et al. 2012; Gupta et al. 2007). In light of this develop-mental trajectory, these children would not be detected by 18-month screening. Therefore, the AAP encourages repeated screening at 24 months, in order to increase the likelihood of identifying children who were missed by an earlier screening.

Caregivers and providers may be reluctant to re-screen children who previously screened nega-tive. However, recent research suggests that 24-month screening is essential to identify chil-dren who were missed by an earlier screening. Specifically, a study of 7781 participants who screened negative on the M-CHAT( R)/F at 18 months, and were rescreened at 24 months, found that 0.4% (n ¼ 32) screened positive on the M-CHAT(-R)/F at 24 months (Dai et al. 2019). Twenty of those “at-risk” children

positive on the M-CHAT(-R)/F at 24 months (Dai et al. 2019). Twenty of those “at-risk” children attended a diag-nostic evaluation, and, of those, 80% (n ¼ 16) received a developmental diagnosis (50% ASD (n ¼ 10), 30% (n ¼ 6) other developmental dis-order) warranting intervention. Children who received an ASD diagnosis based on their positive 24-month screening, after having a negative 18-month screening, did not differ on demo-graphics (gender, race, ethnicity, maternal educa-tion, or annual

screening, did not differ on demo-graphics (gender, race, ethnicity, maternal educa-tion, or annual income) nor overall developmental functioning, from children who received an ASD diagnosis based on a positive 18-month screening (Dai et al. 2019). Although only 0.4% of children screened pos-itive at 24 months after screening negative at 18 months, the majority of children who attended an evaluation as a result of their repeated screen-ing met criteria for a developmental diagnosis. The

evaluation as a result of their repeated screen-ing met criteria for a developmental diagnosis. The opportunity to identify additional children who will benefit from early intervention services, in our view, outweighs the risks and possible inconveniences of executing this repeated ASD screening procedure. Thus, Dai et al.’s (2019) results support the AAP’s recommendation to screen for ASD at 18 and 24 months in order to facilitate early referral to intervention services while increasing the

and 24 months in order to facilitate early referral to intervention services while increasing the likelihood of identifying chil-dren who were missed by an earlier screener.

## Future Directions  The growing emphasis on early diagnosis and intervention underscores the need to determine the optimal ages for ASD screening. Given that barriers are preventing some practices from fol-lowing AAP recommendations of repeated screening, it is critical for research on the utility of repeated screening to inform clinical practice. Since only one study has evaluated the utility of repeated screening at 18 and 24 months, addi-tional research is needed to replicate results of

of repeated screening at 18 and 24 months, addi-tional research is needed to replicate results of Dai et al. (2019) with a larger sample of children who screen negative at 18 months and then are diagnosed with ASD following a positive 24-month screening. Additionally, the AAP’s recommendation for screening at 18 and 24 months was made before researchers demonstrated the ability to reliably diagnose ASD within the first year of life. Accord-ingly, additional research is warranted in order to

ASD within the first year of life. Accord-ingly, additional research is warranted in order to determine whether 18 and 24 months are the best ages for screening, or if repeated screening at other ages enables detection of a greater number of children at risk. Finally, the advance of technology enables the M-CHAT-R/F to be administered online. This saves time for pediatricians and may reduce the burden of repeated screening. However, future research is necessary to compare the sensitivity and

burden of repeated screening. However, future research is necessary to compare the sensitivity and specificity of the M-CHAT-R/F when it is administered electronically, compared to paper screening followed by a phone interview. Although there are barriers to routine screen-ing, its utility in helping to detect children with ASD, reduce the age of diagnosis, and decrease racial disparities in age at diagnosis makes it a critical component of well-child care visits and developmental care.

in age at diagnosis makes it a critical component of well-child care visits and developmental care. Accordingly, pediatricians are encouraged to continue to screen for ASD during well-child care visits, even if children pre-viously screened negative. Additionally, it is important to continue to encourage caregivers to complete ASD screeners and to follow through on recommendations for evaluations, when warranted.

## Description  The Uzgiris-Hunt Ordinal Scales of Psychological Development (U-H Scales; Uzgiris and Hunt 1975) are a set of six scales of cognitive develop-ment designed for infants from 1 to 24 months of age. Scales were inspired by the work of Piaget and thus are grounded in the theory that development is an “epigenetic process of evolving new, more com-plex, hierarchical levels of organization in intel-lect and motivation” (Uzgiris and Hunt, p. 47). The Scales include: Scale I: The

in intel-lect and motivation” (Uzgiris and Hunt, p. 47). The Scales include: Scale I: The Development of Visual Pursuit and the Permanence of Objects, Scale II: The Development of Means for Obtaining Desired Environmental Events, Scale IIIa: The Development of Vocal Imitation, Scale IIIb: The Development of Gestural Imitation, Scale IV: The Development of Operational Cau-sality, Scale V: The Construction of Object Rela-tions in Space, and Scale VI: The Development of Schemes for Relating to

of Object Rela-tions in Space, and Scale VI: The Development of Schemes for Relating to Objects.

## Historical Background  Deriving from Piaget’s theory of cognitive devel-opment in the first 2 years of life, the Uzgiris-Hunt Ordinal Scales of Psychological Development (Uzgiris and Hunt 1975; hereafter referred to as U-H Scales) were developed as an alternative to contemporaneous infant develop-mental tests such as the Bayley or the Gesell. Uzgiris and Hunt argued that those tests, simply downward extensions of intelligence tests devised for older children and adults, reflected particular

extensions of intelligence tests devised for older children and adults, reflected particular assumptions regarding development of intelli-gence in infancy. These assumptions included the following: that development in infancy reflects a unitary process (“general intelligence”; Spearman 1904); that individual differences in intelligence are synonymous with differential rates of achievement in relation to chronological age, in other words, that developmental quotient (DQ) is the precursor to IQ and

to chronological age, in other words, that developmental quotient (DQ) is the precursor to IQ and continuous with it; and that developmental skills evolve incremen-tally, without regard to relationships among achievements or to the possibility of a hierarchical progression (Uzgiris and Hunt 1975). (Although the notion of age-referenced norms was anathema to the authors, because of wider interest, ages at which most infants in the original sample passed individual items are listed in the manual.

ages at which most infants in the original sample passed individual items are listed in the manual. Indeed, the size of the original sample would preclude the use of the suggested ages as true age norms.)

To challenge each of these assumptions, the authors developed the U-H Scales. First, based on Piagetian concepts, they designed six separate scales that were thought to represent “relatively independent branches” (Uzgiris and Hunt 1975, p. 15) of ability. This was a novel idea in infant assessment at that time; for example, the Bayley Scales had only a few years earlier been divided into a Mental Scale and a Motor Scale. Second, achievements in each domain were proposed to follow a consistent

Scale and a Motor Scale. Second, achievements in each domain were proposed to follow a consistent order, yet without being linked to a particular chronological age. From emerging research on the effects of deprivation (e.g., orphanage settings; Provence and Lipton 1962) as well as enrichment (e.g., nursery schools; Skeels et al. 1938) on development, Uzgiris and Hunt noted the critical role of the environment and thus the reduced importance of chronological age in intellectual ability. Thus,

the environment and thus the reduced importance of chronological age in intellectual ability. Thus, the authors intended to dissociate the measurement of intelligence from age and thus from an a priori rate of development. Taken to support this view was the finding that infant DQs were not predictive of IQs in adolescence and adulthood (see Hunt 1961) despite having high split-half reliability as well as high test-retest reliability. Finally, the scales were constructed such that each item built

as high test-retest reliability. Finally, the scales were constructed such that each item built directly on the accomplishments of the previous items. And once again, the Scales were rooted firmly in Piagetian concepts, the authors being strongly influenced by his previous scientific endeavors as a biologist: “We have also presumed that this hierarchical organization of abilities and motives consists of coordinations and differentiations among the several sensorimotor organizations already present

of coordinations and differentiations among the several sensorimotor organizations already present at birth, and that progress toward the symbolic representations and regulations com-prising competence and intelligence undergoes an epigenetic development analogous to the embry-onic development of organ structures from the single cell constituting the fertilized ovum” (Uzgiris and Hunt 1975, p. 15). This notion of the coordination of progressively more complex systems into a hierarchical

p. 15). This notion of the coordination of progressively more complex systems into a hierarchical organization is illus-trated by the following description of how basic actions develop into goal-directed activity: “At the simplest level, visual following over wide arcs depends upon a coordination of eye move-ments with head movements. At a somewhat more complex level comes the sensorimotor coordina-tion of Piaget’s second sensorimotor stage. Here, arm movements and grasping become coordi-nated

of Piaget’s second sensorimotor stage. Here, arm movements and grasping become coordi-nated with looking in the visually-directed reaching. . .and looking becomes coordinated with listening as things heard become something to look at in the behavior of auditory localization. Here, also, vocalization becomes coordinated with listening as the infant begins to recognize repeatedly encountered sounds and to manifest pseudo-imitation of familiar vocal patterns. Dur-ing the third and fourth stages,

and to manifest pseudo-imitation of familiar vocal patterns. Dur-ing the third and fourth stages, according to Piaget’s observations, these first habitual coordi-nations become coordinated at a new hierarchical level in various means-ends relationships” (Uzgiris and Hunt 1975, p. 32).

In addition to being able to measure develop-ment of infants along these six dimensions (rates of which were anticipated to be relatively inde-pendent) and compare them to each other, the authors expected that other researchers would conduct the necessary studies to provide age norms. A further goal was to develop a tool that would facilitate research on the influence of vari-ous kinds of circumstances (i.e., child-rearing sit-uations) on development of the various skills contained in the

(i.e., child-rearing sit-uations) on development of the various skills contained in the Scales. Finally, the authors fore-saw utility in the U-H Scales to measure rates of change as well as guide efforts of intervention programs for young children.

## Development of the Instrument  Piaget’s manuscripts with their rich and detailed descriptions of his own infants’ behavior offered a wealth of examples upon which an assessment tool could be based, the authors recognized. Their goal was to draw from these many examples and arrange them in order, both items that required eliciting situations as well as those that were sim-ply observations of spontaneous behavior given a set of toys. From the volumes The Origins of Intelligence in Children

spontaneous behavior given a set of toys. From the volumes The Origins of Intelligence in Children (Piaget 1936) and The Construction of Reality in the Child (Piaget 1937), the authors selected a number of eliciting situations that could be reproduced in a lab setting within a brief period of time. In addition, they compiled critical actions associated with each eliciting situation, actions which were proposed to mean that an infant had attained a specific milestone of functioning in each domain

were proposed to mean that an infant had attained a specific milestone of functioning in each domain of devel-opment. Thus began a phase of exploratory test-ing, inter-rater reliability, and revision that included samples of infants from 1 to 24 months of age. The first sample included 42 infants, the second included 23, and the final phase of study tested 84 infants. The final revision of the assess-ment was comprised of 73 eliciting situations across six scales: Scale I: The Development of Visual

was comprised of 73 eliciting situations across six scales: Scale I: The Development of Visual Pursuit and the Permanence of Objects; Scale II: The Development of Means for Obtaining Desired Environmental Events; Scale IIIa: The Development of Vocal Imitation; Scale IIIb: The Development of Gestural Imitation; Scale IV: The Development of Operational Cau-sality; Scale V: The Construction of Object Rela-tions in Space; and Scale VI: The Development of Schemes for Relating to Objects. Notably,

Rela-tions in Space; and Scale VI: The Development of Schemes for Relating to Objects. Notably, the scales were constructed such that quality of per-formance could be documented, rather than using the “pass/fail” criterion typical of many assess-ment measures. Instead, several alternative responses are listed in addition to the critical actions (responses that qualified as passing a given level of functioning) so that various types of “failures” could be recorded.

## Scale I: The Development of Visual Pursuit and the Permanence of Objects  The items in this series focus on the development of the concept of objects, or, as Piaget referred to it, the construction of objects. At the beginning is the basic scheme of looking. The first step beyond basic looking is the visual pursuit of objects, which gradually progresses to permit following objects through larger and larger arcs until pursuit is completed for an arc of 180°. Later achieve-ments include finding

and larger arcs until pursuit is completed for an arc of 180°. Later achieve-ments include finding partially and fully hidden objects (object permanence) and then visible and invisible displacements of objects.

## Scale II: The Development of Means for Obtaining Desired Environmental Events

This scale involves the actions infants engage in either to cause events or to obtain desired objects. Items range from visually directed grasping to pulling a string to obtain an object to using a stick to obtain a toy out of reach. “Increasing differentiation of actions-as-means from actions-as-ends, increasing determination of means by the envisioned end leading to subordination of means to ends, and increasing anticipation regarding the appropriateness of particular means seem to

to ends, and increasing anticipation regarding the appropriateness of particular means seem to char-acterize progress along this sequence” (Uzgiris and Hunt 1975, p. 109).

## Scale IIIa: The Development of Vocal Imitation  The beginning of the vocal imitation sequence involves cooing and recognition of the infant’s own sounds and progresses to vocalizing in response to another’s sounds and finally repeating new words.

## Scale IIIb: The Development of Gestural Imitation  Items on this scale concern responses to the ges-tures of others, and the scale begins with a gestural response to a familiar gesture. Later items include imitation with objects, imitation of visible gestures, and, finally, imitation of invisible ges-tures (not visible to the child, e.g., tapping one’s own head or clucking one’s tongue).

## Scale IV: The Development of Operational Causality  The beginnings of comprehension of causality involve repeating actions that result in an interest-ing spectacle. As this ability develops, the infant will hand a spinning toy back to the examiner after a demonstration, then attempt to activate it him-self/herself, and finally will attempt to activate novel objects not yet demonstrated.

## Scale V: The Construction of Object Relations in Space  This series focuses on development of implicit understanding of and construction of object rela-tions in space. Early items include accurately localizing the source of sounds, reconstructing the trajectory of rapidly falling objects, recogniz-ing rotation of a three-dimensional object in space, and building a tower of blocks.

## Scale VI: The Development of Schemes for Relating to Objects  The steps in this sequence basically describe the early development of play with toys and objects prior to representational (pretend) play. Beginning with simple mouthing and visual inspection and ending with naming objects, several steps in between include actions observed in the first year of life: simple manipulation such as hitting, shaking, dropping, and throwing, followed by so-called socially instigated behaviors such as

shaking, dropping, and throwing, followed by so-called socially instigated behaviors such as showing and functional play (“indicating appreci-ation of their usual function”; Uzgiris and Hunt 1987, p. 124).

## Clinical Uses  In a follow-up volume, Uzgiris and Hunt (1987) listed 137 research papers that had employed the U-H Scales to date, either in part or in its entirety. Several chapters in the volume were devoted to major areas of inquiry using the Scales, including measurement of progress in early intervention studies (see Seibert 1987), and developmental assessment of children with mental retardation (Curcio and Houlihan 1987; Kahn 1987), Down Syndrome (Cicchetti and Mans-Wagener 1987), and

(Curcio and Houlihan 1987; Kahn 1987), Down Syndrome (Cicchetti and Mans-Wagener 1987), and motor impairments (Robinson and Rosenberg 1987). As had been done previously in the context of mental retardation/intellectual disability by a host of researchers, measurement of sensorimotor development in autism was first undertaken in order to assess intellectual functioning in severely affected nonverbal children (Curcio 1978). The U-H Scales had recently been published, and was the instrument of

children (Curcio 1978). The U-H Scales had recently been published, and was the instrument of choice for many researchers studying cognitive development in children with autism. The resulting studies reported no deficits in children with autism in most areas of sensorimotor development compared to mental-age-matched peers, with the notable exception of gestural imitation. Furthermore, a relative strength in object permanence skills was often observed in the children with autism (Dawson and

strength in object permanence skills was often observed in the children with autism (Dawson and McKissick 1984; Morgan et al. 1989; Sigman and Ungerer 1981, 1984; Wetherby and Gaines 1982). See Dunst (1980) for an attempt to provide more traditional norms for these scales.

## Definition  In 1998, Andrew Wakefield and co-workers published an article in The Lancet claiming that the combination measles-mumps-rubella (MMR) vaccine caused autism. One year later, fol-lowing a pointed directive by the United States Public Health Service and the American Academy of Pediatrics (AAP) to remove thimerosal (an ethylmercury-containing preservative) from vaccines, parents became concerned that mercury caused autism. During the next ten years, epide-miological studies showed

concerned that mercury caused autism. During the next ten years, epide-miological studies showed that both of these hypotheses were incorrect. A few years later, the hypothesis again shifted – this time to the more diffuse and more difficult to test notion that too many vaccines given too early caused autism. While it is unethical to prospec-tively test children who either have or have not been vaccinated to determine differences in neurodevelopmental outcomes, one study has addressed this

vaccinated to determine differences in neurodevelopmental outcomes, one study has addressed this question retrospectively. Michael Smith and Charles Woods took advan-tage of a study performed and published by Wil-liam Thompson and co-workers at the Centers for Disease Control and Prevention (CDC). Thomp-son evaluated more than 1,000 children: first, by carefully examining the medical records of every child to determine how much mercury the child had received either prenatally in RhoGam or

of every child to determine how much mercury the child had received either prenatally in RhoGam or post-natally in vaccines and second, by prospectively administering more than 40 neurodevelopmental and psychological tests to determine if the neuro-logical outcome could be correlated with the quantity of mercury to which the child had been exposed. Thompson found no relationship between mercury exposure and autistic spectrum disorder. Smith and Woods mined data from the Thomp-son study to

exposure and autistic spectrum disorder. Smith and Woods mined data from the Thomp-son study to answer a different question. They noted that some parents had immunized their chil-dren according to the CDC/AAP schedule while others had chosen to delay, withhold, separate, or space out vaccines. Separating these children into two groups, they found no relationship between the timing of vaccination and neurological outcome. It is likely that the hypotheses concerning the relationship between

and neurological outcome. It is likely that the hypotheses concerning the relationship between vaccination and autism spec-trum disorder will continue to shift to include adjuvants, manufacturing residuals, inactivating agents, or growth factors. All hypotheses are test-able but are likely to be fruitless endeavors.

## Synonyms  Divalproex sodium (Depakote, Depakote ER/CP); Valproate sodium (Depacon); Valproic acid (Depakene and Stavzor)

## Definition  Valproate is a broad spectrum anticonvulsant used to treat seizures, manic episodes, and migraines. The exact mechanism of action underlining each of the drug’s clinical effects remains unclear. However, a wide range of actions have been reported to contribute to the drug’s diverse effects, such as: increasing the levels of gamma-aminobutyric acid (GABA) in the brain, inhibiting voltage-gated sodium channels, reducing levels of excitatory amino acid (such as beta-hydrobutryric

voltage-gated sodium channels, reducing levels of excitatory amino acid (such as beta-hydrobutryric acid), inhibiting calcium channels, modulating dopaminergic and serotonergic transmission, and inhibiting histone deacetylase. Common side effects reported include tremors, confusion, fatigue, dizziness, nausea, weight gain, abdominal cramps, and abnormal liver function-ing. Other potential side effects include liver dam-age (i.e., hepatotoxicity), metabolic and endocrine adverse effects, and

effects include liver dam-age (i.e., hepatotoxicity), metabolic and endocrine adverse effects, and teratogenicity. Prenatal expo-sure to valproate is associated with delayed cog-nitive development and congenital malformations. Additionally, prenatal use of valproate significantly increases the risk for autism spectrum disorder. Studies have shown that individuals exposed to valproate during pre-natal development may be up to three times more likely to develop autism, when compared to

pre-natal development may be up to three times more likely to develop autism, when compared to indi-viduals who were not exposed to valproate.

## Definition  It describes the phenomenon of differing clinical features or phenotype among individuals carrying the same gene allele or genotype. Expressivity differs from penetrance, which describes the probability that a genetic variation (or allele) will yield the phenotype at all. Variable expression of a phenotype may be influenced by other genetic variations, epigenetic factors, or environment. This term is often used in conjunction with expla-nations of variable severity of

or environment. This term is often used in conjunction with expla-nations of variable severity of autism-related traits within families. Certain copy number variants (CNVs) associated with autism display variable expressivity, showing association with other neurodevelopmental disorders, including schizo-phrenia, epilepsy, and intellectual disability.

## Definition  The term “validity” refers to the extent to which a concept or measurement accurately corresponds to the real world. In psychiatry and psychology, validity is often discussed in terms of its application to psycho-metrics, or the study of psychological measure-ment. This application of the term is known as test validity, which refers to the degree to which a test measures what it claims to measure (Anastasi and Urbina 1997). Test validity is important because it determines the

claims to measure (Anastasi and Urbina 1997). Test validity is important because it determines the inferences that can be made based on the test results. In evaluating the validity of a test, several lines of evidence can be considered to support its valid-ity. In particular, three principal types of validity must be considered: content validity, criterion validity, and construct validity (Lord and Corsello 2005; Sattler 2008). Content validity refers to the degree that the items on a test

and Corsello 2005; Sattler 2008). Content validity refers to the degree that the items on a test accurately represent the domain that the test is aiming to measure. Building content validity into a test involves care-ful selection of items to include, with particular focus on the thoroughness of the item sample. Criterion validity refers to the relationship between the test score and a criterion variable, such as other measures or outcomes, which has already been determined as valid.

criterion variable, such as other measures or outcomes, which has already been determined as valid. Oftentimes, a diagnosis is used as the criterion of reference, in which cases this analysis is referred to as establishing diagnostic validity. Finally, construct validity refers to the extent to which a test accu-rately measures a psychological construct or trait. It is evaluated by examining the correlations between the test and different measures of the same construct, as well as correlations

correlations between the test and different measures of the same construct, as well as correlations between the test of interests and those designed to measure different constructs. Positive correlations between measures of the same domain and the absence of correlations between measures of different domains provide evidence of construct validity. An additional use of the term in psychiatry concerns assessing the validity of diagnostic cat-egories, or the extent to which the definition of the

assessing the validity of diagnostic cat-egories, or the extent to which the definition of the diagnosis accurately describes its presentation. An influential paper, published in 1970, listed five criteria for establishing the validity of psychi-atric diagnoses (Robins and Guze 1970). First, the disorder must have a clear clinical description, including symptomology, demographic character-istics, and etiology. Second, laboratory tests must be conducted to further inform the clinical description.

etiology. Second, laboratory tests must be conducted to further inform the clinical description. Third, the disorder of interest must be differentiated from related disorders. The fourth criterion involves conducting follow-up studies to establish the characteristic course of the disorder and provide evidence of diagnostic stability. Finally, family studies should be conducted to determine the extent to which the disorder is heritable.

## Synonyms  Brand names: Effexor (immediate release); Effexor XR (extended release)  ## Indications  According to the official prescribing information, venlafaxine is FDA-approved to treat major depressive disorder (MDD), generalized anxiety disorder (GAD), social anxiety disorder, and panic disorder with or without agoraphobia in adults (Wyeth Pharmaceuticals 2009). It is not approved for children or adolescents under the age of 18 years. Venlafaxine is not approved for the treatment of

children or adolescents under the age of 18 years. Venlafaxine is not approved for the treatment of autism spectrum disorders (ASDs). ASDs include the DSM-IV-TR diagnoses of autistic disorder, Asperger’s disorder, and pervasive developmental disorder, not otherwise specified (PDD-NOS). The decision to use venlafaxine in the treatment of established clinical indications that may co-occur with ASDs, as mentioned above, or for commonly observed symptoms of ASDs, such as hyperactivity, inattention,

as mentioned above, or for commonly observed symptoms of ASDs, such as hyperactivity, inattention, irrita-bility, aggression, repetitive behaviors, and social impairment, can be made on an individual basis by the treating practitioner. This will be discussed in more detail in the “Clinical Uses” section.

## Mechanisms of Action  ### Mechanism of Action According to Stahl’s Essential Psychopharmacology (2008)

Venlafaxine is a serotonin norepinephrine reup-take inhibitor (SNRI), resulting in reuptake block-ade of both serotonin and norepinephrine at the level of neuronal synapses and dendrites. This differs from selective serotonin reuptake inhibi-tors (SSRIs), which block only serotonin reup-take. Usually, the neurotransmitters serotonin and norepinephrine are released from the presyn-aptic axon terminal to travel across the synaptic cleft and attach to the postsynaptic axon terminal. Any excess

to travel across the synaptic cleft and attach to the postsynaptic axon terminal. Any excess neurotransmitter remaining in the cleft is picked up by their respective reuptake transporters in the presynaptic axon to be inactivated for later use or degraded. Serotonin has long been one of the neurotransmitters impli-cated in the pathophysiology of depression and anxiety disorders. It is hypothesized that a deple-tion of serotonin available to act on the postsyn-aptic axon results in symptoms such

that a deple-tion of serotonin available to act on the postsyn-aptic axon results in symptoms such as depression, nervousness, guilt, loneliness, apathy, and avolition. Antidepressants with serotonin reuptake inhibition, like SSRIs and SNRIs, block serotonin from reuptake at the presynaptic reup-take transporter. This provides excess serotonin to attach to postsynaptic receptors and exerts the intended antidepressant and anxiolytic effects. Additionally, norepinephrine has been found to

the intended antidepressant and anxiolytic effects. Additionally, norepinephrine has been found to regulate serotonin release and reuptake. When norepinephrine floods the synaptic cleft, it is taken up by presynaptic alpha-2 receptors, which then decreases the amount of serotonin released at the axon. Norepinephrine can also be taken up by alpha-2 receptors on neuronal dendrites, which sends a signal to the neuron to decrease the amount of serotonin released at the axon terminal. Conversely,

signal to the neuron to decrease the amount of serotonin released at the axon terminal. Conversely, norepinephrine that is taken up by dendritic alpha-1 receptors sends a signal to the axon to accelerate serotonin release. This inter-play is further complicated by specific serotonin receptors regulating the release of norepinephrine. Furthermore, dopamine is a third neurotransmitter whose regulation is influenced by serotonin and norepinephrine and which likely plays a role in the pathophysiology

is influenced by serotonin and norepinephrine and which likely plays a role in the pathophysiology of depression and anxiety disorders. When serotonin and norepinephrine reuptake transporters are blocked via SNRIs, dopamine is increased in the prefrontal cortex. This can lead some patients to feel more energized and less fatigued, as well as demonstrate improve-ments in concentration and attention. The global consequence is that multiple neurotransmitters regulate multiple brain pathways via

The global consequence is that multiple neurotransmitters regulate multiple brain pathways via positive and negative feedback loops. SNRIs capitalize on these complex relationships and are targeted to treat symptoms experienced in mood and anxiety disorders.

Symptoms of depression include depressed mood, apathy, sleep disturbance (typically sleep-lessness), both mental and physical fatigue, slowed executive function, psychomotor retarda-tion or agitation, changes in appetite (usually decreased), suicidal thinking, and feelings of guilt or worthlessness. The pathophysiology of these symptoms is thought to result from com-plicated interactions between serotonin, norepi-nephrine, and dopamine in various areas of the brain. Depressed mood is thought

serotonin, norepi-nephrine, and dopamine in various areas of the brain. Depressed mood is thought to stem from hypoactivity of all three neurotransmitters in the amygdala and ventromedial prefrontal cortex. Apathy is hypothesized to be the result of nor-epinephrine and dopamine dysfunction in the prefrontal cortex, hypothalamus, and nucleus accumbens. Sleep disturbance is linked to all three aforementioned neurotransmitters in the prefrontal cortex, hypothalamus, and basal fore-brain. Mental

neurotransmitters in the prefrontal cortex, hypothalamus, and basal fore-brain. Mental fatigue is thought to be intimately linked to hypoactivity of norepinephrine on nor-adrenergic receptors in the prefrontal cortex and physical fatigue by hypoactivity of noradrener-gic receptors in the descending spinal cord. Dopamine hypoactivity in the prefrontal cortex also contributes to mental fatigue, but dopamine dysfunction is linked to physical fatigue in the striatum, nucleus accumbens, and

but dopamine dysfunction is linked to physical fatigue in the striatum, nucleus accumbens, and hypothalamus. Norepinephrine and dopamine dysfunction in the dorsolateral prefrontal cortex is implicated in slowed executive functioning. Psychomotor agi-tation or retardation is linked to hypoactivity of all three neurotransmitters in the prefrontal cor-tex, serotonin and dopamine in the striatum and nucleus accumbens, and serotonin and norepi-nephrine in the cerebellum. Serotonin hypoactivity in

nucleus accumbens, and serotonin and norepi-nephrine in the cerebellum. Serotonin hypoactivity in the hypothalamus is implicated in decreased appetite commonly experienced in depression, whereas serotonin hypoactivity in both the ventromedial prefrontal and orbital fron-tal cortices can result in suicidal ideation. Feel-ings of guilt or worthlessness are often attributed to serotonin hypoactivity in the ventromedial prefrontal cortex and amygdala.

A number of medications that effectively treat depression also effectively treat anxiety disorders due to an overlap in symptomatology. Anxiety disorders include GAD, obsessive-compulsive disorder (OCD), panic disorder, social anxiety disorder, and posttraumatic stress disorder (PTSD), with core symptoms of all five being anxiety, fear, and worry. Anxiety and fear are due to dysfunction in the amygdala, in part, which synthesizes input from multiple brain areas to determine the need for a fear

in part, which synthesizes input from multiple brain areas to determine the need for a fear response. This area is regulated by a number of neurotrans-mitters, including serotonin and norepinephrine, so these are subsequently implicated in the path-ophysiology of anxiety and fear. Both SSRIs and SNRIs increase the amount of serotonin available to the postsynaptic neuron by blocking the sero-tonin reuptake transporter in the presynaptic neu-ron and are effective at reducing anxiety and fear in

reuptake transporter in the presynaptic neu-ron and are effective at reducing anxiety and fear in all five anxiety disorders. However, not all SSRIs or SNRIs are approved for the treatment of all five anxiety disorders; prescribers should rely on data demonstrating their efficacy when choosing a treatment. Interestingly, serotonin reuptake transporters have been found to differ genetically from person to person, with certain types leading to differences in how fearful stimuli are processed. This

to person, with certain types leading to differences in how fearful stimuli are processed. This may determine a person’s genetic predisposition to anxiety or fear, provid-ing additional information to the prescriber when choosing a treatment. The symptom of worry, on the other hand, is thought to be due to over-activation of a cortico-striatal-thalamic-cortical feedback loop. Like the pathophysiology of anx-iety, multiple neurotransmitters are also believed to regulate this loop, including

of anx-iety, multiple neurotransmitters are also believed to regulate this loop, including serotonin and nor-epinephrine. Therefore, certain SSRIs and SNRIs, which manage these neurotransmitters, are often effective at managing worry and obsessional thinking associated with OCD.

Venlafaxine’s inhibition of serotonin and norepinephrine reuptake begins immediately, but its antidepressant and anxiolytic effects are often not experienced for up to 6–8 weeks. This is thought to be due to gradual changes on serotonin receptor sensitivity. The belief is that decreased amounts of serotonin hypothesized to occur in depression and anxiety disorders causes the postsynaptic axon to upregulate the number of postsynaptic axonal receptors expressed. In other words, a decreased

to upregulate the number of postsynaptic axonal receptors expressed. In other words, a decreased amount of serotonin in the synaptic cleft results in an increased amount of receptors at the ready. When venlafaxine enters the picture, the level of serotonin in the cleft rises. Postsynaptic receptors sense the serotonin increase and send messages to the axon nucleus about the changes in the synaptic cleft. The nucleus begins downregulating the amount of serotonin receptors ready to receive

cleft. The nucleus begins downregulating the amount of serotonin receptors ready to receive serotonin. These changes are gradual and are believed to take 6–8 weeks before fully com-pleted, reflecting the amount of time before many patients begin feeling relief from their symptoms. Venlafaxine’s serotonin and norepinephrine reuptake is dose dependent, with the most potent serotonin inhibition occurring at low doses and moderate norepinephrine inhibition occurring at higher doses (Wyeth

occurring at low doses and moderate norepinephrine inhibition occurring at higher doses (Wyeth Pharmaceuticals 2009). In a dosing range of 75–225 mg/day, many patients experience mostly serotonergic blockade effects whereas others experience dual serotonin and nor-epinephrine blockade effects (Stahl 2009). In a dosing range between 225 and 375 mg/day, most patients experience dual serotonin and norepi-nephrine blockade effects. Venlafaxine is a sub-strate for the CYP450 2D6 enzyme. It is

and norepi-nephrine blockade effects. Venlafaxine is a sub-strate for the CYP450 2D6 enzyme. It is metabolized to the major active metabolite O-desmethylvenlafaxine, also known as desvenlafaxine in the liver (Wyeth Pharmaceuticals 2009). O-Desmethylvenlafaxine has higher norepinephrine reuptake inhibition compared to venlafaxine, so administration of the drug results in variable levels of venlafaxine and O-desmethylvenlafaxine in the blood, which can lead to variable norepinephrine inhibition.

Given this variability, caution must be taken to appropriately titrate venlafaxine, especially if the patient is taking other medications metabolized by the CYP450 2D6 enzyme. The advent of desvenlafaxine for the treatment of depression and anxiety disorders, also known by its brand name Pristiq, allows metabolism by CYP450 2D6 to be bypassed. According to the prescribing information, a single oral dose of venlafaxine had 92% absorp-tion with an absolute bioavailability of 45% (Wyeth

single oral dose of venlafaxine had 92% absorp-tion with an absolute bioavailability of 45% (Wyeth Pharmaceuticals 2009). Venlafaxine has been marketed in two forms, Effexor immediate release and Effexor XR (extended release). Effexor XR has a slower rate of absorption but has comparable absorption to the immediate release version, offering the benefit of single daily dosing. Subsequently, Effexor XR is the common form prescribed. Absorption is neither affected by food nor time of day of

Effexor XR is the common form prescribed. Absorption is neither affected by food nor time of day of administration. Given that venlafaxine is metabolized in the liver and excreted by the kidney, dosing adjustments should be made in patients with liver and renal impairment, although there is room for adjustment given patient variability in liver metabolism and renal clearance. In liver impairment, the dose should be decreased by as much as 50% or more. In renal impairment, the dose should be

the dose should be decreased by as much as 50% or more. In renal impairment, the dose should be decreased from 25% to 50%, whereas in patients receiving hemodialysis, the dose should be decreased as much as 50%. Venlafaxine has a dose-dependent effect on blood pressure, causing sustained hypertension at 300 mg/day or above, and should therefore be used with caution in patients with hypertension or cardiac conditions (Stahl 2009). Dosing adjustments are not required based on gender or age in

or cardiac conditions (Stahl 2009). Dosing adjustments are not required based on gender or age in adults (Wyeth Pharmaceuticals 2009). Steady-state plasma levels of venlafaxine are achieved no less than 4 days after administration or a dose adjustment.

## Specific Compounds and Properties  (R/S)-1-[2-(dimethylamino)-1-(4-methoxyphenyl) ethyl] cyclohexanol hydrochloride or ( )-1-[α- [(dimethylamino)methyl]-p-methoxybenzyl] cy-clohexanol hydrochloride. Empirical formula: C17H27NO2 HCl. Molecular weight: 313.87.

## Clinical Use (Including Side Effects)  ### FDA-Approved Clinical Uses  According to the official prescribing information, venlafaxine is FDA-approved to treat major depressive disorder (MDD), generalized anxiety disorder (GAD), social anxiety disorder, and panic disorder with or without agoraphobia in adults only (Wyeth Pharmaceuticals 2009). There are currently no FDA-approved uses in children or adolescents. For the treatment of MDD and GAD in adults, Effexor XR is typically started at 75

or adolescents. For the treatment of MDD and GAD in adults, Effexor XR is typically started at 75 mg once daily, although some patients may require a starting dose of 37.5 mg/day for 4–7 days before increasing to 75 mg/day. For patients with moderate depression who do not demonstrate improvement in depres-sive symptoms, Effexor XR can be increased by 75 mg at least every 4 days to a maximum dose of 225 mg/day. In one study examining patients with severe depression, the maximum mean daily dose

of 225 mg/day. In one study examining patients with severe depression, the maximum mean daily dose to achieve symptom control was 350 mg/day, but data exploring the use of Effexor XR above 225 mg/day is limited. According to Stahl, “non-responders at lower doses should try higher doses to be assured the benefits of dual SNRI action,” and up to 600 mg/day has been given (Stahl 2009). Again, there is a possibility for sustained hypertension in doses above 300 mg/day, so pre-scribers should proceed

a possibility for sustained hypertension in doses above 300 mg/day, so pre-scribers should proceed with caution when con-sidering doses above the recommended dose.

For the treatment of panic disorder in adults, Effexor XR should be started at 37.5 mg/day for 7 days, followed by 75 mg/day for 1 week, and then weekly dosing increases of 75 mg/day to a maximum of 225 mg/day as needed. For the treat-ment of social anxiety disorder, the daily dose recommendation is 75 mg/day. Switching between Effexor immediate release to Effexor XR can be done with equivalent dosing, although some dosing adjustments may be required based on the clinical response. Effexor

dosing, although some dosing adjustments may be required based on the clinical response. Effexor immediate release is given in divided daily doses, usually twice or three times daily. It is not clear how long patients should be treated with venlafaxine for maintenance of the aforementioned disorders, so the need for this medication and dosing require-ments should be occasionally reassessed. When discontinuing Effexor XR, the dose should be decreased by 75 mg/day each week, although some

When discontinuing Effexor XR, the dose should be decreased by 75 mg/day each week, although some patients may require longer taper periods, as long as many months. According to Stahl, the goal of treatment is complete remission of symptoms and prevention of future relapses, so venlafaxine is taken both throughout and in between clinical relapses (Stahl 2009). Although venlafaxine can eliminate symptoms while being taken, it does not cure depression or anxiety disorders and symptoms can reoccur

while being taken, it does not cure depression or anxiety disorders and symptoms can reoccur after the medicine has been stopped. After the first episode of depression in the treat-ment of adults with MDD, venlafaxine should be taken for 1 year following symptom relief. After the second or any subsequent episodes of depres-sion, treatment with venlafaxine may be indefinite to avoid relapse of symptoms. When treating GAD with venlafaxine, remission for symptoms may be delayed as long as 6 months,

When treating GAD with venlafaxine, remission for symptoms may be delayed as long as 6 months, requiring adjunctive, short-term treatment of symptom con-trol (Stahl 2008). Once GAD symptoms are con-trolled, treatment with venlafaxine may be indefinite (Stahl 2009).

### Clinical Uses of Venlafaxine in Autism Spectrum Disorders (ASDs)  Researchers have sought various pharmacological treatments to effectively manage symptoms asso-ciated with autistic disorder, Asperger’s disorder, and PDD-NOS. Core symptoms include interfer-ing repetitive behaviors, social impairment, and communication impairment, with associated symptoms generally including hyperactivity, inat-tention, irritability, and aggression. There are cur-rently no randomized, placebo-controlled

inat-tention, irritability, and aggression. There are cur-rently no randomized, placebo-controlled research studies exploring the use of venlafaxine in treating ASDs, so data supporting its utility in this area is sparse. However, there is one open retrospective clinical report (Hollander et al. 2000) that examined 10 children, adolescents, and young adults (nine males and one female, aged 3–21 years) with the aforementioned ASDs who took venlafaxine for control of core symp-toms of ASDs as

years) with the aforementioned ASDs who took venlafaxine for control of core symp-toms of ASDs as well as for attention-deficit/hyperactivity disorder (ADHD) symptoms. Using SNRIs for the treatment of symptoms asso-ciated with ASDs is based on previous observations that norepinephrine reuptake inhibi-tors had been useful in controlling hyperactivity and that some serotonin reuptake inhibitors, like clomipramine, fluoxetine, fluvoxamine, and ser-traline, may have some benefit on other symptoms (Cook

clomipramine, fluoxetine, fluvoxamine, and ser-traline, may have some benefit on other symptoms (Cook Jr. et al. 1992; Gordon et al. 1993; McDougle et al. 1996; Steingard et al. 1997). Also, venlafaxine was shown to demonstrate util-ity in controlling symptoms of ADHD in adults (Findling et al. 1996), which has since been observed in a pediatric population (Findling et al. 2007). The Hollander et al. report used low doses of venlafaxine between 6.25 and 50 mg/day. Six of the ten subjects were

al. report used low doses of venlafaxine between 6.25 and 50 mg/day. Six of the ten subjects were considered responders, rated as being “much improved” or “very much improved” on the CGI-I scale. In those patients, all three core dimensions of autism were improved, including repetitive behavior, social relatedness, and communication. Most spe-cifically, the responders demonstrated decreased obsessional thinking, repetitive behaviors, and abnormal vocalizations, as well as improved eye contact,

thinking, repetitive behaviors, and abnormal vocalizations, as well as improved eye contact, socialization, contextual language use, and complexity of play. Five of the six responders also had improvements in ADHD symptoms. The researchers observed behavioral activation in some patients and warned that this may stem from serotonin reuptake inhibition as evidenced by prior reports (Sanchez et al. 1996). They were reassured that the tendency for venlafaxine to induce clinically significant,

al. 1996). They were reassured that the tendency for venlafaxine to induce clinically significant, dose-dependent hypertension (usually above 300 mg/day) would not affect their subjects as the maximum dose used was 50 mg/day (Thase 1998).

This study is limited by the small sample size, the younger ages of the participants, two of the subjects’ concomi-tant use of other medication, and the retrospective design. Therefore, prescribers should be cautious in generalizing these results to the larger popula-tion of patients with ASDs. There have been iso-lated case reports suggesting the utility of using venlafaxine in the treatment of self-injurious behavior and for ADHD symptoms in patients with ASDs (Carminati et al. 2006), as

of self-injurious behavior and for ADHD symptoms in patients with ASDs (Carminati et al. 2006), as well as one case report that suggested a concern for increased agitation in a patient with autism and developmental disabilities taking venlafaxine (Marshall et al. 2003). However, there are currently no randomized, placebo-controlled studies investigating the efficacy of venlafaxine in treating ASDs, so the results of these studies should be regarded with caution before generaliz-ing their utility

so the results of these studies should be regarded with caution before generaliz-ing their utility in treating the greater population of children and adults with ASDs.

### Side Effects  Venlafaxine’s side effect profile is a consequence of both serotonin and norepinephrine reuptake blockade on receptors throughout the body (Stahl 2008). Motor activation or tremor can result from acute stimulation by norepinephrine of beta-1 and/or 2 adrenergic receptors in the cere-bellum or peripheral sympathetic nervous system. Stimulated cardiac beta-1 receptors can cause changes in heart rate, and changes in blood pres-sure may result from stimulation of noradrenergic

changes in heart rate, and changes in blood pres-sure may result from stimulation of noradrenergic receptors in the brain stem cardiovascular center and descending spinal cord. According to the prescribing information, treatment with Effexor XR above 300 mg/day was associated with sustained hypertension defined as treatment-emergent supine diastolic blood pressure (SDBP) ≥ 90 mmHg and ≥ 10 mmHg above base-line for three consecutive on-therapy visits, although an insufficient number of patients

above base-line for three consecutive on-therapy visits, although an insufficient number of patients received Effexor XR above 300 mg/day to effec-tively evaluate this response (Wyeth Pharmaceuticals 2009). Agitation may be experi-enced from the stimulation of noradrenergic receptors in the amygdala or limbic cortex (Stahl 2008). According to Stahl, there may be “pseudo-anticholinergic” side effects from a reduction of parasympathetic tone, resulting from stimulation of noradrenergic receptors

from a reduction of parasympathetic tone, resulting from stimulation of noradrenergic receptors in the sympathetic ner-vous system (Stahl 2008). In other medications, direct blockade of muscarinic receptors results in classic anticholinergic side effects that include dry mouth, urinary retention, and constipation. SNRIs have no effect on muscarinic receptors, but they do increase sympathetic tone via stimulation of noradrenergic receptors, creating a similar albeit milder effect.

On the other hand, stimulation of serotonin receptor subtypes (5-HT2A, 5-HT2C, 5-HT3, and 5-HT4) likely causes other notable side effects. A small amount of increased serotonin shortly after initiating therapy is often enough to mediate some side effects, even if the clinical benefit is not yet apparent to the patient. Patients who are treated for MDD are at increased risk for experiencing suicidal thinking and behavior. Antidepressants as a class have been shown to increase the risk of

suicidal thinking and behavior. Antidepressants as a class have been shown to increase the risk of suicidal thinking and behav-ior in children, adolescents, and young adults (ages 18–24) with MDD and other psychiatric disorders (Wyeth Pharmaceuticals 2009). Such risk should be carefully considered when pre-scribing venlafaxine in the pediatric and young adult population, although venlafaxine is not currently approved for use in populations youn-ger than 18 years. According to Stahl (2009),

is not currently approved for use in populations youn-ger than 18 years. According to Stahl (2009), gastrointestinal side effects can include decreased appetite, nausea, diarrhea, or decreased appetite. Sexual dysfunction can include abnormal ejaculation, abnormal orgasm, or impotence. Central nervous system side effects include rare seizures, headache, nervous-ness, insomnia, or sedation. Endocrine side effects include syndrome of inappropriate anti-diuretic hormone (SIADH) and hyponatremia.

side effects include syndrome of inappropriate anti-diuretic hormone (SIADH) and hyponatremia. Patients with undiagnosed bipolar disorder may be vulnerable to the activating properties of venlafaxine, resulting in hypomania or mania, although this is rare. There has been some reported weight gain in patients taking Effexor, but this is not an expected side effect.

## Definition  A ventricle is a chamber or space in the brain which contains cerebrospinal fluid. There are four ventricles in the brain, all of which are con-tiguous with the central canal of the spinal cord. The ventricles of the brain are the fourth ventricle, the third ventricle, and two lateral ventricles.

## Synonyms  Apraxia of speech (AOS); Articulatory apraxia (or dyspraxia); Childhood apraxia of speech (CAS); Developmental apraxia of speech (DAS); Developmental dyspraxia; Developmental verbal apraxia (or dyspraxia); Dyspraxia; Verbal dyspraxia

## Short Description or Definition  Verbal Apraxia (VA) is a speech disorder, or cat-egory of speech disorders, in which an individual has difficulty consistently forming and executing motor plans necessary for the articulation and ordering of sounds in words. This difficulty is not due to weakness, slowness, or incoordination of muscles of the mouth and throat, and is fre-quently attributed to impaired translation of lin-guistic plans into motor speech patterns. While VA has recently become a

translation of lin-guistic plans into motor speech patterns. While VA has recently become a topic of interest to pro-viders and families of individuals with communi-cation difficulties, including those with Autism Spectrum Disorders, it has been described and investigated by neurologists, psychologists, and speech pathologists for much longer. In 1865, Broca first described a similar articu-latory language deficit, which he termed aphemia, although this was largely subsumed into the more common

language deficit, which he termed aphemia, although this was largely subsumed into the more common term aphasia until the concept of apraxia of speech began to develop in the 1950s and 1960s. The development of VA as a well-defined, discrete entity has been slow, largely because of difficulty establishing whether, indeed, it does resemble other established apraxias (e.g., motor apraxias) wherein automatic function of discrete muscle movements are intact. The problem of assessing discrete elements

function of discrete muscle movements are intact. The problem of assessing discrete elements of speech production outside of speech has dogged efforts to arrive at a standard definition that does not overlap exces-sively with other disorders. The concept of a developmental VA was ini-tially proposed by Morley, Court, and Miller in 1954 as a constellation of symptoms similar to those defined in VA in adults that could be used to describe a group of children with speech defi-cits despite objectively

adults that could be used to describe a group of children with speech defi-cits despite objectively normal development of orofacial and lingual anatomy. The developmental or childhood form of VA becomes manifest during acquisition of language skills, particularly during attempts at complex articulations. Providers, researchers, and families are inter-ested in determining whether individuals with ASD might have higher rates of DVA, and whether DVA might lead to or exacerbate prob-lems with

with ASD might have higher rates of DVA, and whether DVA might lead to or exacerbate prob-lems with language development in this group. However, recent evidence suggests that inspite of difficulty with other apraxias, individuals with autism do not show a particularly high rate of DVA, and in fact show speech errors that are easily differentiated from errors shown in children with DVA.

## Categorization  Verbal apraxia is variably considered as a discrete entity or disease, a syndrome or symptom cluster, or a category of disorders with more specific subtypes. It can be classified broadly as developmental, meaning it presents during initial language acqui-sition, or acquired, meaning it results from later life injury. Within this developmental category, further subdivisions are made on etiological grounds, separating deficits due to known neuro-logical disease from those due to

on etiological grounds, separating deficits due to known neuro-logical disease from those due to the complex neurobehavioral presentations of genetic or meta-bolic syndromes, and also from deficits without a known cause, which are referred to as idiopathic. Just as there is no formal, widely agreed upon definition, there is considerable variety in the ter-minology and in the classification schemes, and use of particular terms may indicate a provider or researcher’s perspective on this controversial

use of particular terms may indicate a provider or researcher’s perspective on this controversial diagnosis. For example, the use of “verbal” may indicate emphasis on linguistic deficits over gross or fine motor problems. Likewise, the prefix “dys” often indicates the assumption that the disorder is present from birth, while the prefix “a” often indicates suspicion that the disorder was acquired after birth.

## Epidemiology  Incidence of VA is difficult to calculate precisely given the disagreement on its definition and the variety of diagnostic criteria employed. In its acquired form it is reported in as many as two thirds of patients with aphasia, but rarely reported in isolation. Estimates on the prevalence of the developmental form based on rates of diagnosis in various pediatric clinics indicate population rates between 0.125% and 1.3%. Developmental verbal apraxia (DVA) is more common in

population rates between 0.125% and 1.3%. Developmental verbal apraxia (DVA) is more common in children with relatives having communication disorders or learning disabilities. It is diagnosed more fre-quently in boys, although this could reflect an ascertainment bias if boys are more likely to be referred for speech and language evaluation. Indi-viduals with VA may also have additional apraxia diagnoses, but it is unclear whether these diagno-ses are more common in individuals with VA than in

but it is unclear whether these diagno-ses are more common in individuals with VA than in individuals without a VA diagnosis.

## Natural History, Prognostic Factors, Outcomes  ### Natural History   change. Charting progress on targeted behaviors is also possible through curriculum-based measurements if team members are examining change in the context of the classroom as compared to the performance expected of other students in the classroom. Parents can have a critical role in the measurement of outcomes, particularly if the desired behaviors are primarily observed in the home, although documenting generalization of

if the desired behaviors are primarily observed in the home, although documenting generalization of behaviors across home and school settings is ideal.

### Qualifications of Treatment Providers  There is no specific training required to implement video modeling other than being familiar with the equipment and software used to create and edit the video models or video self-models. Models require the basic skills to act out a pre-determined script that is targeting the desired behavior. Parents, teachers, speech-language pathologists, and other related service providers may be required to take on primary responsibility for planning and editing

service providers may be required to take on primary responsibility for planning and editing the videos or particular aspects of the video depending on the targeted behaviors and the requirements for language, engagement, physical positioning, behavior, etc.

### See Also  *   Modeling *   Self-Recognition *   Social Skill Interventions *   Video Instruction  ## Video Prompting Kyle D. Bennett and Mashal Salman Aljehany Department of Teaching and Learning, Florida International University, Miami, FL, USA

University of Jeddah, Jeddah, Makkah, Kingdom of Saudi Arabia  ### Definition  Video prompting (VP) is one of the several video-based instruction strategies, and it involves a student observing an actor performing individual task steps on a video before imitating those task steps. The process is comprised of the following sequence: The student observes a single step, and then the student performs that step. The student repeats this process until all task steps are completed. Additional prompts

that step. The student repeats this process until all task steps are completed. Additional prompts and performance feedback are required for some individuals, and these should be faded as soon as possible to promote the independent demonstration of the skills or the independent use of the VP system.

### Historical Background  Video-based instruction (VBI) is based, in part, on Albert Bandura’s Social Learning Theory (Bellini and Akullian 2007). In that seminal work, Bandura (1977) posited that in addition to learning behaviors through direct experience, humans could also acquire behaviors by observing others emit behavior. Bandura reasoned that the ability to imitate others makes for efficient learning that results in the large behavior repertoires that humans develop. Others have

efficient learning that results in the large behavior repertoires that humans develop. Others have supported the idea that imitation is a critical feature of learning that is essential for developing a variety of important skills (Cooper et al. 2020). VBI is also based on other behavioral procedures such as task analysis, behavior chaining, and performance feedback (Banda et al. 2011). VBI has been implemented for decades with individuals with developmental disabilities (DD), including people

implemented for decades with individuals with developmental disabilities (DD), including people who experience autism spectrum disorder (ASD; Banda et al. 2011; Bellini and Akullian 2007). VBI incorporates two main strategies that include video modeling (VM) and VP; there are additional variations based on these overall VBI techniques. The main difference between VM and VP is related to the video presentation. When using VM, an interventionist plays the video of an actor performing an entire

presentation. When using VM, an interventionist plays the video of an actor performing an entire task before instructing the student to imitate what they observed on the recording. When using VP, the interventionist plays a video of one step of a task being completed by an actor prior to instructing the student to model what they viewed, and this continues until all steps have been presented using the video recordings, as well as all steps having been completed or attempted by the student

using the video recordings, as well as all steps having been completed or attempted by the student (Aljehany and Bennett 2019).

VP is a VBI strategy that is used with behavior chains (i.e., behaviors comprised of multiple steps, such as making a sandwich). Earlier research suggested that people performed better when completing a behavior chain while viewing smaller portions of video compared to viewing longer video sections (Margolius & Sheffield, as cited in LeGrice 1989). LeGrice (19989), applying the aforementioned research finding, was among the first researchers to explore the effects of VP on the skill acquisition

finding, was among the first researchers to explore the effects of VP on the skill acquisition of chained behaviors among individuals with DD. In that study, LeGrice (1989) successfully used VP as part of a time delay strategy to teach individuals with intellectual disability (ID) to use a video recorder and a personal computer. Participants were given an opportunity to perform the target behaviors. If the participants did not respond, or if they responded in error, a video prompt was delivered

If the participants did not respond, or if they responded in error, a video prompt was delivered up to three times. The researcher showed the participants a video clip of an actor completing the corresponding task step and then asked the participants to imitate what they observed. In this sense, VP was used as a consequence strategy. Soon after the LeGrice (1989) study, Tiong et al. (1992) examined the effects of VP when teaching individuals with ID fire safety skills (e.g., exiting a building).

the effects of VP when teaching individuals with ID fire safety skills (e.g., exiting a building). Similar to the LeGrice (1989) study, Tiong et al. (1992) used VP as part of a time delay strategy whereby participants were given an opportunity to respond. However, contingent upon no response or an error, the researchers showed participants a video prompt of the correct behavior, and this video was shown up to three times. Similar to the previously discussed study, VP was used as a consequence

shown up to three times. Similar to the previously discussed study, VP was used as a consequence strategy. Results indicated that participants acquired the correct responses, there was evidence of generalization, and the responses maintained following the removal of the intervention.

In a later study, Norman et al. (2001) investigated VM combined with VP to teach children with DD three self-help skills including cleaning sunglasses, putting on a watch, and using a zipper to close a jacket. Norman et al. (2001) started sessions by showing a complete video model of the entire task. This video model was followed by a zero-second time delay whereby the researchers then showed participants a video prompt of the first task step to be completed. The time delay for showing

participants a video prompt of the first task step to be completed. The time delay for showing participants the video prompt eventually increased to 5 sec. Results indicated that VM combined with VP was successful in teaching the students the targeted skills. In addition to these positive results, there is an important distinction between the study by Norman et al. and those by LeGrice (1989) and Tiong et al. (1992): Norman and colleagues used the VM and the VP sequence, at least initially, as

Tiong et al. (1992): Norman and colleagues used the VM and the VP sequence, at least initially, as an antecedent strategy rather than a consequence strategy. Although VP eventually became a consequence strategy in the Norman et al. study, this variation is notable in that the researchers implemented VP as a system to match errorless learning parameters. Graves et al. (2005) also used VM combined with VP to teach three secondary students with ID to complete cooking tasks. Similar to Norman et

with VP to teach three secondary students with ID to complete cooking tasks. Similar to Norman et al. (2001), Graves et al. (2005) initially used VM and VP as antecedent strategies to reduce the likelihood of student errors while learning the targeted tasks. VP eventually became a consequence strategy as the study progressed, and the results indicated that the participants acquired the cooking skills with anecdotal reports of generalization and maintenance.

An additional, albeit subtle, variation of this research line was conducted by Sigafoos et al. (2005). In this study, the researchers examined VP (without the use of VM) on the acquisition and maintenance of adults with DD making a snack. Intervention sessions consisted of researchers playing a video prompt before requesting participants to complete a given step. Sigafoos et al. continued to use VP as an antecedent intervention throughout the study, and this represents an approach to VP that

VP as an antecedent intervention throughout the study, and this represents an approach to VP that potentially reduces errors committed by participants. Results suggested that two of the three participants acquired and maintained the skill; however, VP was not helpful for the remaining participant. In a follow-up study, Sigafoos et al. (2007) examined the effects of VP as an antecedent strategy to improve a daily living skill (DLS) – in this case, dishwashing – among adults with DD. The VP

to improve a daily living skill (DLS) – in this case, dishwashing – among adults with DD. The VP procedure was implemented identically to the Sigafoos et al. (2005) study. Results suggested that participants acquired the skills; however, unlike previous research, they did not maintain the skill when VP was removed. Attempts to fade VP by progressively combining steps until the procedure resembled VM were successful with two of the three participants. The remaining participant’s responding was

VM were successful with two of the three participants. The remaining participant’s responding was variable. The results related to maintenance led to Sigafoos et al. (2007) questioning whether VP might lead to a level of prompt dependency for some participants. That is, some participants would continue to require video prompts to complete tasks. For some researchers, practitioners, caregivers, and students, this dependency might be of concern since the use of devices to prompt behavior might

and students, this dependency might be of concern since the use of devices to prompt behavior might not be suitable in all settings (Sigafoos et al. 2007).

The studies described represent a sampling of the development of the VP strategy; the presentation of these studies does not imply a specific timeline nor does it represent an exhaustive sample of the work during the timeframe of the reviewed studies. The critical point is that the tactic emerged as a means of helping individuals learn tasks comprised of multiple steps given that early research demonstrated that shorter video clips, focused on fewer behaviors, were effective when teaching

demonstrated that shorter video clips, focused on fewer behaviors, were effective when teaching people skills (LeGrice 1989). The application of VP with individuals with DD proved successful, and researchers applied variations (e.g., as an antecedent strategy and as a consequence strategy) with success. The development of VP continued during the ensuing years, and there is ample research available today to suggest that the practice is evidence-based under certain circumstances.

### Current Knowledge  Over the last several decades, researchers have explored the effects of VP on the acquisition, maintenance, and generalization of skills among individuals with DD, including those people experiencing ASD with or without ID. Many of these studies have been organized into systematic reviews of the literature and meta-analyses, and our understanding of the effects of VP has improved as a result of this work. The effectiveness of VP on the acquisition of chained behaviors

improved as a result of this work. The effectiveness of VP on the acquisition of chained behaviors has been well-documented. One of the first research teams to synthesize the research on VP was conducted by Banda et al. (2011). That research demonstrated that VP was effective for teaching a variety of chained behaviors to individuals with ASD with or without ID. In their review of the literature, Gardner and Wolfe (2013) reported that VP was effective when teaching chained behaviors to

Gardner and Wolfe (2013) reported that VP was effective when teaching chained behaviors to individuals with ASD. A subsequent review by Domire and Wolfe (2014) reported similar findings. In a recent meta-analysis, Aljehany and Bennett (2019) reported that VP was an effective instructional strategy for teaching DLS; their results showed the effect size of VP was in the high-moderate range. Among these review studies, the chained behaviors frequently explored were DLSs (e.g., cooking, setting

these review studies, the chained behaviors frequently explored were DLSs (e.g., cooking, setting tables, laundry skills, tying shoes, and washing dishes), community skills (e.g., using debit cards), vocational skills (e.g., cleaning, making photocopies), and safety skills (e.g., exiting a building).

Maintenance and generalization of skills were noted among some of the studies in the aforementioned systematic reviews. Indeed, Banda et al. (2011) and Domire and Wolf (2014) reported that some researchers demonstrated positive results related to maintenance and generalization of skills. However, issues with maintenance were also noted in some studies. Overall, these features of learning – that is, maintenance and generalization – seem to be understudied, and additional work is needed.

In addition to the overall effects of VP, researchers have explored parameters of VP, including the perspective of the videos, the actors serving as models in the videos, differing screen sizes, and the use of other procedures as part of a VP intervention package, to name a few (Bennett et al. 2017). The perspective from which the video is recorded, and subsequently played for those receiving VP, can be from (a) a first-person, or point-of-view, perspective; (b) a third-person, or spectator,

VP, can be from (a) a first-person, or point-of-view, perspective; (b) a third-person, or spectator, perspective; or (c) a combination of both of these. A first-person perspective shows learners a video of an actor performing a task; however, only the actor’s arms and hands are in view. A third-person perspective shows students a video of the actor completing tasks from a distance such that most or all of the actor’s body is in view while completing the task. Researchers have used all three

or all of the actor’s body is in view while completing the task. Researchers have used all three perspectives across VBI studies with success. When it comes to VP, in particular, researchers have reported that the strategy has been effective using either perspective, as well as the combined perspective (Domire and Wolfe 2014). Moreover, Bennett et al. (2017) reported that there were no differences in two comparison studies whereby researchers examined differences related to the video

differences in two comparison studies whereby researchers examined differences related to the video perspectives. Notwithstanding these findings, a first-person perspective has the advantage of reducing additional stimuli that might be less relevant to task completion, and this feature could benefit individuals with ASD who are known to have issues with over-selectivity and attending to tasks (Gardner and Wolfe 2013).

Another parameter of VBI that received attention in the literature is related to the actors performing tasks in the videos. Bandura (1977) suggested that imitation of others’ behaviors could be affected by the degree to which the actor, or model, is similar to the individual learning skills. In the overall VBI literature, there are numerous examples of various models used as actors in the videos, including self as the model, children as the models, and adolescent and adults as the models. In

including self as the model, children as the models, and adolescent and adults as the models. In the Bennett et al. (2017) review on parameters of VBI, comparison of models was examined by researchers with inconclusive results. In some cases, self as the model (when compared to peer or adult models) was more effective for a limited number of participants. In other instances, self as the model, adult as the model, and peer as the model were equally effective (Bennett et al. 2017). In

model, adult as the model, and peer as the model were equally effective (Bennett et al. 2017). In demonstration studies where the model type was not compared, there have been successful reports of VM and VP with children modeling adult actors, adolescents modeling adult actors, and adults modeling adult actors (Gardner and Wolfe 2013). Thus, specific guidance is difficult to offer at the present moment, and additional research seems to be warranted when examining the effects of model type when

moment, and additional research seems to be warranted when examining the effects of model type when implementing VM or VP (Bennett et al. 2017).

In recent years, and as a result of improvements in mobile technology, researchers have investigated the effects of different screen sizes when using VBI. Among the advances in technology are the screen sizes of video playback devices. Devices used in past VBI research included televisions, desktop computer monitors, laptop computers, tablet computers, and smartphones, to name a few. To date, there are inconclusive results related to this parameter of VBI (Bennett et al. 2017). Some

date, there are inconclusive results related to this parameter of VBI (Bennett et al. 2017). Some researchers found little differences in student performance when comparing large to small screen sizes using VM (Miltenberger and Charlop 2015), while other researchers found larger screen sizes to be more effective for participants when using VM (Mechling and Ayres 2012). Recently, Bennett et al. (2016) found that results between two different screen sizes were negligible for two participants,

(2016) found that results between two different screen sizes were negligible for two participants, with the remaining participant performing better with a larger screen size when using VP. Considering the corpus of work examining screen sizes with VBI, Bennett et al. (2016) posited that differences in student performance could be unique to the characteristics of the students or the tasks they are learning to complete.

Other intervention components have been included with VP (Aljehany and Bennett 2019; Banda et al. 2011). Some of these additional strategies include the use of voice-over instructions that accompany each video step, the use of response prompts and fading systems (e.g., least-to-most prompting, graduated guidance), and error correction (Aljehany and Bennett 2019). Voice-over instruction provides students with an auditory cue as part of the video, and the inclusion of this extra cue can help

students with an auditory cue as part of the video, and the inclusion of this extra cue can help some individuals perform the demonstrated behavior (Bennett et al. 2017). However, as pointed out by Bennett et al. (2017), a few individuals seemed to perform better without the use of voice-over narration. Thus, caregivers and practitioners should record the video with narration and then test if the narration is useful to the student. Adjusting this parameter, if initially recorded, is as simple

narration is useful to the student. Adjusting this parameter, if initially recorded, is as simple as lowering the volume (Bennett et al. 2017).

In addition to voice-over narration, researchers have examined the effects of additional response prompting and fading systems to help learners follow video prompts. In a recent meta-analysis of VP, Aljehany and Bennett (2019) reported that the use of response prompting and fading systems, as well as error correction, was needed for some participants with ASD and ID. If these extra strategies are needed, it is critical that implementers fade these extra prompts so that the videos evoke student

needed, it is critical that implementers fade these extra prompts so that the videos evoke student behavior absent of additional assistance by others. Ideally, the students learn to model the video demonstrations on their own so that they can prompt their behavior, especially as they approach new tasks (Smith et al. 2015).

The promise of any VBI system, including VP, is that individuals with ASD and similar developmental disabilities learn a system that can prompt their behaviors independent of caregivers or professionals. The improvements in mobile technology (e.g., tablets, smartphones, and smartwatches) offer the potential for greater independence as students learn to become VBI users (Smith et al. 2016). To date, however, there have been a limited number of studies whereby researchers examined the effects of

however, there have been a limited number of studies whereby researchers examined the effects of VBI as a self-instruction system. In the existing research on self-instruction, implementers completed some tasks for the students while setting up the self-instruction sessions, and this limits the results of the extant data (Smith et al. 2015, 2016). Smith et al. (2016) completed one of the few studies whereby researchers demonstrated that individuals with ASD and ID could learn to self-instruct

whereby researchers demonstrated that individuals with ASD and ID could learn to self-instruct using VM on a smartphone. The results of this study are promising, but additional work is needed in this area.

### Future Directions  Although the use of VP has been well-studied over recent decades, there are still areas that need to be addressed. First, many studies on the use of VP have focused on teaching DLSs. Additional work is needed to learn if VP is useful in developing other skills among individuals with ASD, including academic skills and social skills. Second, Aljehany and Bennett (2019) reported that VP was most frequently studied with adolescent and adult participants. There were too few

that VP was most frequently studied with adolescent and adult participants. There were too few studies and participants where researchers examined VP with elementary-aged students. Moreover, there were even fewer studies and participants that included preschool-aged children. Given these findings, additional research is needed to inform caregivers and practitioners the extent to which VP is effective with younger populations. Third, as illustrated by Banda et al. (2011), Domire and Wolfe (2014),

with younger populations. Third, as illustrated by Banda et al. (2011), Domire and Wolfe (2014), and Smith et al. (2016), additional studies are needed to assess the generalization potential of VBI strategies, including VP. This issue is more pronounced considering that VBI strategies, paired with mobile technology, have the potential to serve as a self-instruction methodology or a self-remediation technique (Smith et al. 2016). Fourth, additional work is needed to explore methods to fade VP so

technique (Smith et al. 2016). Fourth, additional work is needed to explore methods to fade VP so that individuals perform tasks in complete independence. As Sigafoos et al. (2007) argued, there could be instances in which it is not feasible or appropriate for individuals with disabilities to use VP. For instance, some tasks, or task steps, require careful attention (e.g., construction), and the use of mobile technology as a self-instruction or self-prompting device could compromise the safety

use of mobile technology as a self-instruction or self-prompting device could compromise the safety of the person performing the task or others nearby. Finally, as technology continues to advance, becomes more portable, and begins to simulate reality (e.g., portable devices used in virtual reality simulations), the integration of VP tactics with this technology becomes possible. However, research into how such technology affects individuals with ASD, the practicality of using such technology in

into how such technology affects individuals with ASD, the practicality of using such technology in home and community settings, and the feasibility of integrating the instructional strategies with advance technology is needed (Pham et al. 2019).

Although additional work is required to refine some of the parameters surrounding the use of VP, as well as research on integrating VP with more advanced technological developments, the practice is well-suited for helping people with ASD. Years of research have demonstrated that the strategy is useful for developing skills among this population of learners. Caregivers and teachers should consider using this strategy when circumstances permit.

### See Also  *   Video Modeling/Video Self-Modeling  ## Video Tape Analysis Studies Gail Fox Adams Department of Applied Linguistics, University of California, Los Angeles, CA, USA
 ### Definition  This entry on videotape analysis studies considers how researchers use video to study autism, especially in terms of diagnosis, skill assessment, behavioral expression, and lived experience. The studies primarily represent research from the United States.

### Historical Background  Live observation of human behaviors and interactions is a basic investigative tool used in the humanities and social sciences

video self-modeling provides a model of the actual individual engaging in an appropriate behavior. In this case, the individual with autism would watch a videotape of himself/herself engaging in an appropriate example of social initiation. Video modeling and video self-modeling have been used with individuals with autism to increase conversational skills, initiations, and play behaviors as well as decrease challenging behaviors.

Social Stories are short stories written to describe a situation or behavior that may be problematic for the individual such as initiating and responding during a conversation, responding appropriately, and being flexible to changes to a routine. These stories are usually written in the first person and may or may not contain pictures. The story text describes the situation or behavior in clear terms and includes information on who is involved, what is happening, and where it is happening. The

and includes information on who is involved, what is happening, and where it is happening. The story may include information on social cues and how the individual with autism can respond as well as how other people may feel or react. These stories can be used in a variety of settings (e.g., home, school, day care, community outings, etc.) and may be effective for children with autism, Asperger’s syndrome, language impairment, and other developmental disabilities. Social Stories may be effective

language impairment, and other developmental disabilities. Social Stories may be effective because they specifically address a deficit in individuals with autism. Social Stories have been used to decrease challenging behaviors (e.g., shouting, tantrums) and increase socially appropriate behaviors (e.g., following directions, maintaining eye contact). Other examples of visual supports include checklists, visual cues, pictorial prompts, and activity choice boards. These supports may be used to

visual cues, pictorial prompts, and activity choice boards. These supports may be used to increase task completion, engagement, and choice-making abilities.

Caregivers, educators, and therapists will need to consider many factors to determine which visual support system is most appropriate for an individual. The cost of the system and time to produce the system are two factors to consider. For example, video self-modeling may be a very effective strategy but may be costly for some individuals and take too much time to produce and edit. On the other hand, simple line drawings are inexpensive and quick to produce but may not meet the needs of some

hand, simple line drawings are inexpensive and quick to produce but may not meet the needs of some individuals. The physical size of the system also should be taken into consideration. Large calendar systems may be effective for some individuals, but often will need to be shrunk to make them more portable. The smaller system, however, should contain the same information and level of detail as the larger system initially, though it may be possible to fade out details to a more normalized

as the larger system initially, though it may be possible to fade out details to a more normalized reminder system. Some systems may be more effective for certain behaviors. For example, when engaging in a sequential routine, a dynamic system may be most appropriate as pictures can be added to and removed from the visual support. When an individual completes a step in the routine, he/she removes the associated picture for that step and moves to the next step. Positive changes in behavior have

the associated picture for that step and moves to the next step. Positive changes in behavior have been documented when using visual support systems where written directions or expectations are supported by pictures or symbols. The pictures or symbols give the individual a static example that he/she can refer to until the expected behavior is learned.

Future Directions Future research should focus on systems and symbols that produce generalized effects. To improve generalization, multiple exemplars of a symbol within a system may be necessary. During video modeling, multiple examples of social initiation may produce stronger effects than a single example. Multiple examples or symbols to represent the same concept within a Social Story may help individuals generalize their behaviors. For instance, if the story is being used to teach verbal

individuals generalize their behaviors. For instance, if the story is being used to teach verbal responses, it may be useful to provide multiple examples of verbal responses within the story text. During system development, how the target behaviors may generalize across settings, activities, and people should be considered. A visual support may be very effective at home with a parent but not effective at school with a teacher. Additional training or adaptations to increase generalization should

at school with a teacher. Additional training or adaptations to increase generalization should be part of the planning process.

Future research also should focus on maintaining improved behavior outcomes over time, with and without a system in place. Immediate behavior improvements may be caused by the novelty of a new visual support. Behavior change maintained over time would indicate that the change was a result of the visual support and not simply a novelty effect. Maintaining behavior change after the support has been removed also should be planned. Are individuals able to maintain behavior change over time when

removed also should be planned. Are individuals able to maintain behavior change over time when using the system? Is the individual able to function as well without the system? If not, are smaller, less intrusive systems able to produce similar results? Adaptations to increase independence should be part of the visual support planning process, especially for older individuals.

Visual Thinking Synonyms Picture thinking  Definition In her 1995 book, Thinking in pictures and other reports from my life with autism, Temple Grandin describes visual thinking as the ability to think in pictures. Grandin describes how she automatically converts written and spoken words into pictures. She is able to view these visualizations as a running videotape in her mind.

Visual/Somatosensory Cognitive Potentials Definition Cognitive potentials are electrophysiological responses to internal or external events that are derived from recordings of brain activity made with an electroencephalogram, or EEG. To record EEG, sensors that detect electrical activity are placed on the participant’s scalp and secured with a net, cap, or glue. With millisecond-level resolution, these sensors record the electrical activity that naturally propagates to the scalp from thousands

these sensors record the electrical activity that naturally propagates to the scalp from thousands of synchronously firing cortical pyramidal neurons. Cognitive potentials and other measures derived from EEG recordings can thus provide important information about the neurophysiological mechanisms underlying behavioral symptoms of developmental disabilities like autism.

Cognitive potentials are derived by time-locked averaging of segments of EEG recorded during a series of similar events (such as pressing a button or viewing a particular type of stimulus). This averaging technique enables brain activity related to the event to be at least partially dissociated from other processes because randomly distributed “background” brain activity is minimized, while activity that occurs with a reliable temporal relation to the stimulus is retained. The resulting

activity that occurs with a reliable temporal relation to the stimulus is retained. The resulting “event-related potential” (ERP) waveform has a characteristic pattern of peaks and troughs that have been termed “components,” and the amplitude and latency of particular components are typically sensitive to particular types of event. Components are typically labeled by polarity (P for a positive-going deflection, N for a negative-going deflection) and absolute or relative timing (e.g., the P300

deflection, N for a negative-going deflection) and absolute or relative timing (e.g., the P300 is a positive-going deflection that peaks approximately 300 ms after an event occurred or the P3 is the third positive-going deflection after an event occurred). Component characteristics like latency and amplitude can be measured to examine the speed and efficiency of particular cognitive processes, although it is also recognized that visible components likely represent the summation on the scalp of

it is also recognized that visible components likely represent the summation on the scalp of several different underlying sources of neural activity. Early components that are related to sensory processing are commonly termed “evoked potentials” and typically occur within 300 ms of an event; later components occurring between 300 and 2,000 ms of the event are often referred to as “cognitive potentials” and are the focus of this section. Cognitive potentials likely reflect neural activity

potentials” and are the focus of this section. Cognitive potentials likely reflect neural activity associated with “higher-level” cognitive processes like memory, attention, error detection, inhibition, and semantic processing and can thus provide insight into the neural correlates of cognitive functions that appear atypical in autism.

Historical Background The use of EEG to measure brain activity in humans dates back to Hans Berger’s recordings of the brain activity of his young son in the 1920s, although Richard Caton had earlier recorded responses to sensory stimuli in animals in nineteenth-century Liverpool (for a history of the early use of EEG, see Brazier 1961). The event-related potential (ERP) technique was developed in the late 1940s and at that time involved the photographic superposition of several time-locked

in the late 1940s and at that time involved the photographic superposition of several time-locked EEG traces. Although later analog-averaging techniques increased efficiency, it was the introduction of digital signal processing methods that made ERP feasible for larger research studies. In the twentieth century, the information technology revolution transformed the recording, acquisition, and analysis of EEG and enabled the introduction of high-density electrode arrays, faster sampling rates,

of EEG and enabled the introduction of high-density electrode arrays, faster sampling rates, and more sophisticated analytic techniques.

The potential of EEG for revealing information about the nature of neural impairments in autism was recognized from the early development of the techniques, with the first published reports of event-related potentials in autism emerging in the 1960s. Most early studies focused on the P300, a clearly visible positive-going deflection that is elicited by a wide range of events and is modulated by factors such as attention, probability, novelty, and task relevance. With the development of

by factors such as attention, probability, novelty, and task relevance. With the development of increasingly powerful acquisition and analysis systems, work expanded to examine other components over multiple electrodes. Although the majority of EEG studies have been conducted with older and higher-functioning participants, the advent of high-impedance EEG recording arrays that afford more rapid application and do not require scalp abrasion has facilitated more recent work with individuals with

and do not require scalp abrasion has facilitated more recent work with individuals with autism who are younger and have fewer adaptive skills. Such developments in EEG technology have led to an expanding body of knowledge about the neural correlates of a range of cognitive abilities in autism, described in the next sections.

Current Knowledge Face Recognition Many individuals with autism report difficulties with recognizing familiar faces, and interpreting the signals provided by familiar faces is central to successful social interaction. Understanding the source and development of difficulties with face processing facilitates the design of effective interventions and may also provide deeper insight into the process of symptom development in autism. Recent models of the development of face processing emphasize the

of symptom development in autism. Recent models of the development of face processing emphasize the interaction between “expected” experience with faces in the child’s environment and congenital commitment of neural regions with the computational and anatomical qualities optimal for processing complex stimuli like faces. Are face recognition difficulties in autism related to congenital dysfunction in these neural regions, or could they be related to disruptions to the specialization process

in these neural regions, or could they be related to disruptions to the specialization process caused by a lifetime of reduced self-directed experience with faces? Testing the early development of face-processing skills in children with autism is central to testing such proposals.

In a series of studies, Dawson, Webb, Jones, and colleagues have used event-related potentials to examine the development of neural responses to familiar and unfamiliar faces in individuals with autism from toddlerhood to adulthood. Event-related potentials can provide particularly valuable developmental information because the same methodology and paradigms can be used across a wide age range. In this set of studies, participants watched repeated pictures of an unfamiliar face and a highly

In this set of studies, participants watched repeated pictures of an unfamiliar face and a highly familiar face (a parent or loved one) while EEG was recorded with a high-density sensor array. Key cognitive potentials examined in the younger populations included the Nc, a negative-going deflection observed over frontocentral regions and associated with attention; in adulthood, analyses focused on the posterotemporal N250 and N400, negative-going deflections associated with identity processing.

In an initial study, Dawson et al. (2002) found that typically developing 3- to 4-year-old children showed a significantly more negative Nc response to an unfamiliar face than a familiar face, indicating that they recognized the familiar face. In contrast, in 3–4-year-old children with autism, ERP responses to familiar and unfamiliar faces did not significantly differ over any examined component. Critically, responses to familiar and unfamiliar objects in the group with autism were relatively

Critically, responses to familiar and unfamiliar objects in the group with autism were relatively typical, suggesting that disruptions to familiarity processing may be face-specific. Since the familiar face was a picture of the child’s mother, could this mean that children with autism did not recognize a picture of their primary caregiver? Possibly, but subsequent studies support an alternate explanation. In typical development, Nc responses to faces change over early childhood such that

explanation. In typical development, Nc responses to faces change over early childhood such that initially larger (more negative) responses to a highly familiar face during infancy become larger responses to the face of a stranger by age 3–4 years, with a transitional period around the end of the second year of life during which responses to highly familiar and unfamiliar faces are not significantly different. Possibly, the 3–4-year-old children with autism tested by Dawson et al. (2002) were

different. Possibly, the 3–4-year-old children with autism tested by Dawson et al. (2002) were showing the pattern associated with younger typically developing children: the transitional stage between larger neural responses to a familiar versus unfamiliar stimulus. If so, this might suggest that children with autism may have a developmental delay in the effect of facial familiarity on the neural correlates of attention.

To test this possibility, Webb et al. (2011) examined event-related responses to familiar and unfamiliar faces in 18–30-month-old toddlers with autism and two groups of typically developing toddlers. The first group of typically developing toddlers were chronologically age-matched to the toddlers with autism and as expected did not show differential responses to the familiar and unfamiliar faces. The second group of typically developing toddlers was aged between 12 and 18 months and had

faces. The second group of typically developing toddlers was aged between 12 and 18 months and had socialization skills that matched the group of older toddlers with autism. Replicating previous work, this group of toddlers showed greater Nc responses to the familiar than the unfamiliar face. Critically, we predicted that the 18- to 30-month-old toddlers with autism would show Nc responses to the familiar and unfamiliar face that matched those of the 12- to 18-month-old typically developing

the familiar and unfamiliar face that matched those of the 12- to 18-month-old typically developing toddlers. This prediction was confirmed: 18- to 30-month-old toddlers with autism showed significantly greater Nc responses to the highly familiar face than the unfamiliar face. Further, stronger socialization skills as measured by parent report were correlated with a more mature pattern of neural response to familiarity in both groups. These findings confirm that toddlers with autism can

neural response to familiarity in both groups. These findings confirm that toddlers with autism can recognize their parent from a static picture, but suggest that the modulation of attention to faces by familiarity was delayed in line with the development of socialization skills in this group. This is consistent with the possibility that developmental delays in face recognition in children with autism may in part be related to children’s reduced self-directed social experiences with faces in

autism may in part be related to children’s reduced self-directed social experiences with faces in their natural environment.

Consistent with the possibility that disruptions in the early neural correlates of familiar-face recognition are development delays rather than absolute impairments, Webb et al. (2010) found that N250 and N400 responses to highly familiar and unfamiliar faces did not significantly differ between a group of adults with high-functioning autism and a group of age- and IQ-matched neurotypical controls. Although it remains possible that low-functioning adults with autism would show continued

controls. Although it remains possible that low-functioning adults with autism would show continued impairment, these results suggest that early neural correlates of face familiarity processing have become relatively neurotypical for at least some adults with autism. Interestingly, this group of adults did show behavioral impairments in a face recognition battery that required them to identify a set of previously presented faces from related distracters. Investigating the neural correlates of

set of previously presented faces from related distracters. Investigating the neural correlates of encoding and recognition of initially unfamiliar faces may reveal impairments that are not apparent when examining responses to a highly familiar face with affective significance. In addition, deficits in “executive” processes like selective attention, decision-making, resistance to interference, or forming face-context associations may also make a stronger contribution to behavioral or

or forming face-context associations may also make a stronger contribution to behavioral or “real-life” difficulties with face recognition in adulthood than deficits in the systems involved in generating the earliest signals that a face is familiar. Addressing these questions may provide important insight into the deficits that underlie difficulties with face recognition in individuals with autism and may suggest fruitful avenues for intervention.

Emotion Processing Expressing and interpreting emotions can be challenging for many individuals with autism, but the neurophysiological disruptions that underlie this difficulty remain unclear. Recording EEG responses to pictures of faces depicting different emotional expressions provides one way to examine the integrity of very early facial emotion-processing systems in autism. In an initial study, Dawson and colleagues studied neural responses to neutral and fearful faces in 3–4-year-old

study, Dawson and colleagues studied neural responses to neutral and fearful faces in 3–4-year-old children with autism or typical development (Dawson et al. 2004). While neural responses to fearful and neutral faces differed within 300 ms of stimulus presentation for typically developing children, the group of children with autism showed no significant differences in neural response to the two types of stimulus over any examined component. Interestingly, faster responses to emotional faces at

of stimulus over any examined component. Interestingly, faster responses to emotional faces at the posterior N300 were correlated with increased social attention in children with autism, suggesting that more efficient processing of facial emotions was related to stronger social skills in this group.

Consistent with developmental delay in this area, cognitive potential responses to emotional expressions in older children with autism appear more neurotypical, although the neural sources underlying scalp-recorded activity may be weaker and/or slower than those observed in typically developing children (Wong et al. 2008). Possibly, individuals with autism “catch up” with their neurotypical peers in simple emotion-processing tasks, although impairments may remain in more complex aspects of

in simple emotion-processing tasks, although impairments may remain in more complex aspects of emotion processing (e.g., integration with gaze, parallel processing with the semantic content of an interaction, or rapid transitions between different emotions). Examining the longitudinal developmental trajectory of neural responses to emotional expressions in children with autism would provide insight into this possibility.

Attention Although not part of the diagnostic triad, difficulties with attention are common in children on the spectrum and often present significant challenges to caregivers and therapists. One event-related component that is clearly modulated by attention is P300, a well-characterized component that likely reflects neural generators in the temporal, parietal, and frontal areas. P300 is often examined during “oddball” tasks, in which frequent, infrequent, and “novel” (or distinctive) stimuli

during “oddball” tasks, in which frequent, infrequent, and “novel” (or distinctive) stimuli are presented in visual, auditory, or somatosensory modalities. Typically, P300 responses are larger to infrequent and novel stimuli because attention is engaged by their unusual or unpredicted nature. Recent work suggests P300 comprises two separable components: the early frontocentral P3a, peaking between 250 and 280 ms after stimulus presentation and related to the engagement of attention and novelty

250 and 280 ms after stimulus presentation and related to the engagement of attention and novelty processing, and the later parietal P3b, peaking around 300 ms and more sensitive to stimulus probability. Examining P3a and P3b can thus provide insight into the neurophysiological and cognitive mechanisms that underlie problems with attention in autism. Further, since atypicalities in attention are some of the more commonly medicated associated symptoms of autism, examining responses in P300

are some of the more commonly medicated associated symptoms of autism, examining responses in P300 paradigms could identify potentially sensitive indices of treatment response.

In one of the earliest studies to find atypical P300 responses to visual stimuli in autism, Ciesielski, Courchesne and Elmasian (1990) tested 14 high-functioning adults with autism and 14 age-matched controls. Participants saw a series of green or red flashes, mixed in with a series of 1- or 2-kHz sounds. Each block contained frequent and rare flashes and sounds, and participants were asked to press a button in response to either the rare sounds (the focused auditory attention condition) or

press a button in response to either the rare sounds (the focused auditory attention condition) or the rare flashes (the focused visual attention condition). Results showed that the group with autism showed significantly diminished P3 responses to the targets in both auditory and visual modalities, and this was also observed in a subgroup of adults with autism whose behavioral performance matched that of the neurotypical control group. Since diminished P300 responses are thought to reflect

that of the neurotypical control group. Since diminished P300 responses are thought to reflect reduced attention, these results may suggest that the capacity for rapid goal-directed modulation of attention may be atypical in autism. However, there must be significant compensatory mechanisms that enable successful task performance despite atypical early neural responses to the stimuli. Identifying these compensatory mechanisms and their developmental trajectories may be important in identifying

these compensatory mechanisms and their developmental trajectories may be important in identifying effective intervention strategies for attention problems in autism.

Notably, not all studies have observed atypical visual P300 responses in autism, and when disruptions are observed, they are generally milder than for other sensory modalities. For example, Courchesne, Lincoln, Kilman and Galambos (1985) conducted a visual and auditory target detection task with high-functioning adults and adolescents with autism and chronological age-matched controls. Atypicalities in the P300 response to targets were more clearly apparent for auditory than visual stimuli. In

in the P300 response to targets were more clearly apparent for auditory than visual stimuli. In a further example, Kemner, Verbaten, Cuperus, Cafferman and Engeland (1994) used oddball tasks with abstract figures and electromagnetic pulses with age-matched groups of 7- to 13-year-old children with autism, typical development, ADHD, or dyslexia. The group with autism showed larger P300 responses to novel visual stimuli, but diminished somatosensory P300 responses relative to neurotypical

to novel visual stimuli, but diminished somatosensory P300 responses relative to neurotypical controls (though not relative to the other control groups). Taken together, findings suggest that attention may operate with differential efficiency across sensory modalities in autism. However, it is also possible that variability in adaptive or cognitive skill between participant groups is a critical factor. For example, Salmond, Vargha-Khardem, Gadian, de Haan and Baldewag (2007) studied auditory

factor. For example, Salmond, Vargha-Khardem, Gadian, de Haan and Baldewag (2007) studied auditory P300 responses in an oddball task with low- and high-functioning 8- to 20-year-old individuals with autism. While the low-functioning group showed a slower P3a and a diminished P3b response to targets, the high-functioning group did not differ from controls in the latency or amplitude of any component. Further, in a group of 5- to 11-year-old children with autism, Gomot et al. (2010) found that an

Further, in a group of 5- to 11-year-old children with autism, Gomot et al. (2010) found that an atypically large P3a to deviant sounds was related to decreased tolerance of change, as reported by trained nurses who cared for the children in a hospital psychiatric day-care unit. These studies provide supporting evidence that attention is related to symptom variability in autism and suggest that interventions targeting domains of attention may have broad effects for individuals with autism.

In addition to measuring the ability to “tune in” to relevant stimuli, P300 can be used to examine the ability to “tune out” stimuli that are not relevant to an ongoing task. In paradigms where participants are asked to respond to targets and ignore nontargets, P300 responses to nontargets are typically diminished. However, Sokhadze et al. (2009) found that relative to neurotypical controls, P3b responses to nontargets were larger and responses to targets were smaller in a group of adolescents

responses to nontargets were larger and responses to targets were smaller in a group of adolescents and adults with autism. This “flatter” response profile suggests that the group with autism were less able to focus their attention on a selected stimulus type. The authors suggest that early inefficient perceptual filtering may lead to a greater need to actively inhibit nontarget stimuli at a later processing stage. Interestingly, in this study, P300 was examined as part of a suite of outcome

processing stage. Interestingly, in this study, P300 was examined as part of a suite of outcome measures for testing the efficacy of low-frequency repetitive transcranial magnetic stimulation (rTMS) of dorsolateral prefrontal cortex for symptoms of autism. In individuals with autism who received rTMS, the amplitude of P3a response to nontargets significantly decreased between pre- and post-TMS assessment points, while no changes were observed in the wait-list control group. The authors suggest

points, while no changes were observed in the wait-list control group. The authors suggest that TMS treatment may have improved selective attention by strengthening the inhibitory surround of mini-columns in dorsolateral prefrontal cortex. This study illustrates the possible benefits of including event-related potential measures in treatment research, both because of their potential sensitivity to subtle treatment effects and because they may provide greater insight into neurophysiological

to subtle treatment effects and because they may provide greater insight into neurophysiological mechanisms underlying treatment response.

P300 responses can also be used to study spatial attention shifting in autism. Many individuals with autism have difficulty shifting their attention between one object and another or shifting gaze between a person and the object to which they are referring. To understand more about attention shifting in autism, Townsend et al. (2001) examined P300 in nine high-functioning adults with autism and chronological age-matched controls. Adults were presented with an array of five squares and

and chronological age-matched controls. Adults were presented with an array of five squares and instructed to look at a fixation cross that remained in the center of the screen. On each trial, one of the squares would change color to indicate the upcoming location of the target stimulus on that trial. Participants were asked to respond to target stimuli, but not to respond to stimuli that appeared in noncued locations. Because participants had to pay attention to the cued box while looking at

in noncued locations. Because participants had to pay attention to the cued box while looking at the central stimulus, this is a test of covert attention shifting. EEG results showed that the frontal P3a response to peripheral stimuli was delayed or absent in individuals with autism, and behavioral results also showed lower detection accuracy for peripheral versus central stimuli in the autism group only. Since P3a is typically associated with attention engagement, the atypical P3a response may

only. Since P3a is typically associated with attention engagement, the atypical P3a response may indicate that the covert spatial orienting system operates less efficiently in autism. Further, a range of evidence suggests that the integrity of the cerebellum can modulate the cortical activity that contributes to the frontal P3a. Townsend and colleagues thus suggest that impairments in attention shifting in individuals with autism may be related to the influence of cerebellar pathology on

shifting in individuals with autism may be related to the influence of cerebellar pathology on frontal and parietal spatial systems. In addition to providing important insight into attention impairments in autism, this study illustrates how cognitive potentials allow researchers to begin to investigate the neuropathological and neurophysiological correlates of behavioral challenges in autism.

Goal-Directed Learning Individuals with autism often have difficulty with cognitive skills required for flexible, goal-directed behavior like inhibition, planning, and regulatory control. These “executive functions” also appear to be related to variability in adaptive functioning and sociocommunicative development in individuals with autism (e.g., Munson et al. 2008) and are thus important potential predictors of developmental outcome. One executive skill critical to goal-directed learning is

predictors of developmental outcome. One executive skill critical to goal-directed learning is the ability to modify behavior based on internally or externally generated error signals, and cognitive potentials can provide insight into the integrity of those signals in autism. For example, making an error is associated with the frontal error-related negativity (ERN), which occurs within 500 ms of the participant’s response and is thought to reflect internal error monitoring. Examining the

ms of the participant’s response and is thought to reflect internal error monitoring. Examining the integrity of ERN thus provides insight into the integrity of internally generated error signals in autism.

In an initial study, Henderson et al. (2006) found that high-functioning 11-year-old children with autism showed a larger ERN than IQ-matched controls or lower-functioning children with autism. Since a larger ERN would be typically associated with more effective error monitoring, these findings might suggest that children with autism require particularly strong executive functioning skills to develop language. However, several subsequent studies have obtained different results. For example,

develop language. However, several subsequent studies have obtained different results. For example, Vlamings, Jonkman, Hoeksma, van Engeland and Kemner (2008) found that 10-year-old children with autism had a smaller ERN than typically developing controls and that this was not associated with IQ. Source analysis suggested that the reduced ERN reflected diminished brain activity in the anterior cingulate, suggesting that disruptions in error processing may be related to pathology in this brain

suggesting that disruptions in error processing may be related to pathology in this brain region. Similarly, South, Larson, Krauskopf and Clawson (2010) also observed a reduced ERN in a group of 8- to 18-year-olds with autism; correlations were observed with parent reports of social behaviors, suggesting relations between error processing and social symptoms in autism. Tying together these findings, Santesso et al. (2010) found a reduced ERN in high-functioning adults with autism, linked this

Santesso et al. (2010) found a reduced ERN in high-functioning adults with autism, linked this to reduced activity in the anterior cingulate, and observed relations between increased anterior cingulate activity and better social skills. Taken together, the weight of evidence suggests that individuals with autism may have diminished activity in the anterior cingulate gyrus and a corresponding difficulty with response monitoring and error awareness that may be related to their degree of social

with response monitoring and error awareness that may be related to their degree of social impairment.

If individuals with autism have difficulty generating internal error signals, might external feedback be particularly important to learning? The presentation of external feedback is associated with a negative-going deflection called feedback-related negativity (FRN) that is typically more negative to losses or unexpected outcomes than gains or expected outcomes. A recent study of children and adolescents with autism observed relatively neurotypical FRNs to concrete rewards (Larson et al.

adolescents with autism observed relatively neurotypical FRNs to concrete rewards (Larson et al. 2010), despite the diminished ERN that was observed in a substantially overlapping group of children (reported in South et al. 2010). Larson et al. (2010) suggest that the response to internally generated error signals may be more impaired than response to concrete, direct feedback in autism. Although more work is required to consolidate these findings, if children with autism are more able to

more work is required to consolidate these findings, if children with autism are more able to benefit from external feedback than internally generated error signals, there may be important implications for the design of intervention programs.

Movement-Related Potentials The presence of stereotyped and repetitive motor mannerisms is currently one of the diagnostic criteria for autism. Although there are many hypotheses as to the sources of such behaviors, diminished volitional control of movement could contribute to restricted movement patterns. The movement-related potential (MRP) or Bereitschaftspotential is a negative-going deflection observed when movements are internally generated. The MRP typically peaks when the movement is

observed when movements are internally generated. The MRP typically peaks when the movement is made and is maximal over central electrodes. Studying the MRP may provide insight into volitional control of movement in autism.

Two related studies have examined the MRP in groups of adults with autism or neurotypical development. Rinehart et al. (2006) used a paradigm in which participants had to press illuminated buttons until the light turned off, such that the duration of each button press was full cued. In this task, the group of adults with high-functioning autism showed a slower MRP offset than the other groups, suggesting that activity associated with movement preparation took longer to dissipate after the

suggesting that activity associated with movement preparation took longer to dissipate after the movement was generated. In a follow-up study, Enticott, Bradshaw, Iansek, Tonge and Rinehard (2009) modified the paradigm to decrease the provision of external cues for movement generation; participants were asked to press a button at set intervals, with no external cues to which button to press or when. In this version of the task, the MRP peaked significantly earlier in adults with

to press or when. In this version of the task, the MRP peaked significantly earlier in adults with high-functioning autism than those with Asperger’s syndrome and neurotypical adults, again consistent with disruptions in movement preparation. Difficulties with movement preparation may contribute to difficulty with sport or other activities that require fine-grained movement control and could possibly contribute to decreased movement generativity in autism. Studying relations between the MRP and

contribute to decreased movement generativity in autism. Studying relations between the MRP and restrictive and repetitive behaviors would be an important next step in this area.

Future Directions Developments in technology continually afford new research questions in the field of cognitive potentials. The advent of high-density electrode arrays and more powerful source analysis techniques will enable researchers to ask more detailed questions about the neural sources underlying scalp-recorded potentials. However, it is important that the field strives to be representative of the full autism spectrum. The development of low-profile rapid application electrode arrays

of the full autism spectrum. The development of low-profile rapid application electrode arrays facilitates the use of EEG with infants, young children, and individuals with autism with more limited adaptive skills. Nonetheless, appropriate use of EEG with these populations requires extensive practice, experience, and training, and developing and disseminating gold-standard procedures for collecting and analyzing data from these relatively understudied groups is an important future goal.

Examining the relation between cognitive potentials and genetic variation is also an important goal for the field. Understanding how particular neurophysiological or cognitive processes relate to genetic risk markers in children with autism or their family members will help us evaluate whether cognitive potentials could provide valuable endophenotypes of autism. There is promising evidence that family members of individuals with autism may show disrupted event-related responses to social

that family members of individuals with autism may show disrupted event-related responses to social stimuli that resemble those observed in some individuals with autism (Dawson et al. 2005), and examining these responses in relation to particular genetic markers is an important next step.

A further important direction is the integration of cognitive potentials into treatment studies. Many treatment studies currently use global indicators that are not specific to the neural systems that are the hypothesized target of the drug. Furthermore, many more global outcome measures may not be sensitive to subtle changes that occur soon after the drug regime begins and, if reliant on parent report, may suffer from inflated placebo effects. Measuring cognitive potentials may provide a more

report, may suffer from inflated placebo effects. Measuring cognitive potentials may provide a more sensitive, specific, and objective complementary means of assessing response to treatment. Treatment-related ERP changes have been observed with pharmaceutical compounds (Verbaten et al. 1996) and transcranial magnetic stimulation (Sokhadze et al. 2009), indicating that this is a promising approach. One current limitation to the use of EEG in treatment studies is the lack of a standardized

One current limitation to the use of EEG in treatment studies is the lack of a standardized “battery” of tasks designed to load on particular cognitive systems; developing such a battery would be an important step forward.

Finally, understanding the developmental emergence of symptoms of autism is a critical step toward identifying critical periods and potential targets for intervention. EEG is a technique that can be used across the lifespan and is therefore ideally suited to longitudinal or cross-sectional investigations of neurophysiological development in autism. However, there are currently very few studies of under-fives with autism. The current wave of infant sibling studies will provide more information

under-fives with autism. The current wave of infant sibling studies will provide more information about very early development in children at risk for developing autism, and several labs are examining event-related potentials in this population. These studies will provide valuable information about the early emergence of neurophysiological patterns observed in older children and adults and enable questions about their developmental origins. Understanding the neurodevelopmental trajectories that

questions about their developmental origins. Understanding the neurodevelopmental trajectories that result in an autism diagnosis is critical to developing effective systems for early detection and early intervention, key steps toward improving the lives of individuals with autism and their families.

Visual-Motor Function Synonyms Visual-motor ability; Visual-motor integration; Visual-motor skills; Visuomotor ability; Visuomotor function; Visuomotor skills

Definition Visual-motor function is the integration between visual perception and motor skills. More specifically, visual-motor function is the ability to draw or copy forms or to perform constructive tasks integrating both visual perception and motor skills. Visual-motor function involves the ability to coordinate vision with the movements of the body. Due to the body, head, eyes, and limbs being constantly in motion, every time an individual wants to carry out an action, calculations and

being constantly in motion, every time an individual wants to carry out an action, calculations and decisions about orientation, motion, and location need to be made. The parietal cortex is the part of the brain that is responsible for processing and integrating somatosensory, visual, and auditory information and plays an important role in producing planned movements. The cerebellum, brainstem, and frontal lobe are also involved in visual-motor abilities. Visual-motor function deficits can lead

frontal lobe are also involved in visual-motor abilities. Visual-motor function deficits can lead to learning disabilities, neuropsychological deficits, and behavioral problems. For example, deficits in visual-motor function may lead to problems with fine motor tasks that rely heavily on visual feedback such as writing, drawing, painting, building structures with blocks, stringing beads, repairing things, and playing games. Visual agnosia and apraxia are other disorders associated with

repairing things, and playing games. Visual agnosia and apraxia are other disorders associated with visual-motor function deficits. The presence of visual, sensory, or motor deficits is not specific to but is very common in autism. The Bender Visual-Motor Gestalt Test, Second Edition (BG-II), Beery-Buktenica Developmental Test of Visual-Motor Integration (Beery VMI), and the Wide Range Assessment of Visual-Motor Abilities (WRAVMA) are common psychological assessments that assess visual-motor

of Visual-Motor Abilities (WRAVMA) are common psychological assessments that assess visual-motor function.

Visual-Motor Integration, Developmental (VMI) Test Abbreviations | AS       | Asperger’s syndrome                           | |----------|-----------------------------------------------| | ASD      | Autism spectrum disorder                      | | Beery    | Beery-Buktenica Developmental Test of Visual-Motor Integration, sixth edition |

| VMI      |                                               | | BG-II    | Bender Visual-Motor Gestalt Test second edition | | DTVP-2   | Developmental Test of Visual Perception – second edition | | FRTVMI   | Full Range Test of Visual Motor integration   | | HFASD    | High-functioning autism spectrum disorders    | | MCT      | Beery VMI Motor Coordination Test (MCT)       | | PDD      | Pervasive developmental disorders             | | RtI      | Response to intervention

developmental disorders             | | RtI      | Response to intervention                      | | WISC-R   | Revised Wechsler Intelligence Scale for Children |  Synonyms Beery VMI; Beery VMI motor coordination test; Beery VMI visual perception test; Beery-Buktenica developmental test of visual-motor integration; MCT; Visual-motor integration; VMI; VPT; Wide-range assessment of visual-motor abilities; WRAVMA

Description The Beery-Buktenica Developmental Test of Visual-Motor Integration (Beery VMI) is a visual-motor screening tool used to identify children, adolescents, adults, and seniors, aged 2–100 years, who are experiencing difficulty coordinating visual perception and motor (finger and hand) movements (Beery and Beery 2010). The Beery VMI consists of 30 geometric designs of increasing complexity that participants are asked to copy. The specific Beery VMI items are listed in Table 1. It can be

that participants are asked to copy. The specific Beery VMI items are listed in Table 1. It can be administered to individuals or groups and takes about 10 min to complete. The 30-item Full Form can be used with all age groups, 2–100 years, while the 21-item Short Form can be used with children ages 2 through 7 years.

Two additional standardized tests, the Beery VMI Visual Perception Test (VPT) and the Beery VMI Motor Coordination Test (MCT) are also available for child and adult participants to complete, and this facilitates the comparison of an individual’s separate visual and motor performance skills. The VPT requires examinees to identify a target design among choices, and the MCT requires examinees to trace geometric shapes with a dashed outline using a pencil without an eraser. Each supplemental test

geometric shapes with a dashed outline using a pencil without an eraser. Each supplemental test takes about 5 min to complete. “The two tests use the same stimulus forms as the Beery VMI, unlike other visual-motor test batteries that mistakenly compare less related stimuli and tasks” (Beery and Beery 2010, p. 2). Although administration of the VPT and MCT are not necessary, it is suggested that if they are used, the Beery VMI should be administered first, followed by the VPT and then the MCT.

The Beery VMI is used by psychologists, educators, and allied health professionals to assess children and adults with presenting known or suspected developmental, behavioral, learning, neurological, or psychological difficulties including individuals with autism spectrum disorder (ASD) (Fulkerson and Freeman 1980; Lopata et al. 2007; Novales 2006; Volker et al. 2010). Individuals administering the test must have Examiner B qualifications, which includes a graduate degree in a related field

the test must have Examiner B qualifications, which includes a graduate degree in a related field (such as psychology, occupational therapy, education, speech therapy, physiotherapy, or health sciences) or equivalent training to complete the assessment. The Beery VMI is a paper and pencil test that must be hand-scored by the examiner. The scoring sheet is included as part of the Beery VMI test booklet. Copied shapes and designs receive either a score of “1” for being correct or “0” (no-score)

Copied shapes and designs receive either a score of “1” for being correct or “0” (no-score) for items not copied correctly (Beery and Beery 2010). Specific guidelines regarding scoring are provided in the manual including pictorial examples as well as specific written scoring criteria for each geometric form. Accurate scoring requires the use of a protractor to make judgments about accuracy of angles, etc. The administration of the Beery VMI, VPT, and MCT items and scoring is stopped after

angles, etc. The administration of the Beery VMI, VPT, and MCT items and scoring is stopped after three consecutive forms have received a “no-score.” The raw score consists of the total number of correct forms until the ceiling score is reached (e.g., three consecutive wrong items). The raw score is converted to the standard score using the conversion tables provided and then the standard score is used to calculate the percentile rank for the child’s specific age range. Tables for each of these

used to calculate the percentile rank for the child’s specific age range. Tables for each of these scores are provided in the test manual. The test manual also contains tables to convert raw scores into age equivalents.

Four supplemental materials are available in addition to the Beery VMI that can be used to enhance the teaching of visual-motor integration skills to children include the following:
*   The Beery VMI Stepping Stones Parent Checklist that includes about 200 of the “Stepping Stones” milestones that a parent can observe and note on a check list (Beery and Beery 2010).

*   The Beery VMI Developmental Teaching Activities that contains about 250 activities geared to assist children from birth to age 6 develop skills to promote skill development (Beery and Beery 2010).
*   The Beery VMI My Book of Shapes that provides 100 activities that may help with the learning of letter and numeral shapes (Beery and Beery 2010).

*   The Beery VMI My Book of Letters and Numbers that extends upon the My Book of Shapes activities and provides 100 additional exercises designed to provide more practice with numerals and upper- and lower-case letters (Beery and Beery 2010).

Historical Background The Beery VMI, consisting of 24 items, was first published by Beery in 1967 and has retained its original forms, characteristics, and strengths. Geometric forms, rather than letters or numbers, were selected as the basis for the test’s items, to minimize the impact of culture and/or education. “The Beery VMI was standardized six times between 1964 and 2010 with a total of more than 13,000 children. It was also nationally standardized in 2006 with 1,021 adults” (Beery and

than 13,000 children. It was also nationally standardized in 2006 with 1,021 adults” (Beery and Beery 2010, p. 1). In the 1997 version, two supplemental standardized tests – the Beery VMI Visual Perception Test (VPT) and Beery VMI Motor Coordination Test (MCT) – were added which allowed users to statistically compare an individual’s visual and motor contributions to visual-motor integration. The Beery VMI was revised in 2004 consisting of 30 geometric forms and included an extended age range

Beery VMI was revised in 2004 consisting of 30 geometric forms and included an extended age range for its norms down to 2 years of age (Beery and Berry 2004). As well, the authors identified 600 “Stepping Stones” or milestones that may serve as precursors for visual-motor integration for children from birth through to age 6. The Stepping Stones have been listed in both the Parent Checklist and in the Beery VMI test manual as a reference guide. Developmental Teaching Activities based on the

in the Beery VMI test manual as a reference guide. Developmental Teaching Activities based on the Stepping Stones were also developed for this edition. During the 2006 revision of the Beery VMI, adult norms were added to include participants aged 19–99 years, 11 months. “The Beery VMI and its supplemental Visual Perception and Motor Coordination tests were renormed in late 2009 and 2010 on children obtained from the four major census regions in the United States” (Beery and Beery 2010, p. 100).

Psychometric Data A wealth of psychometric data has been reported for the Beery VMI during its six revisions. The information reported here focuses on the most recent reliability and validity data reported in the sixth edition of the Beery VMI manual published in 2010. Types of reliability data often reported includes internal consistency, test-retest/time sampling reliability, inter-rater/inter-scorer reliability, and intra-rater reliability. For participants aged 2–17, the Cronbach alpha

reliability, and intra-rater reliability. For participants aged 2–17, the Cronbach alpha coefficients for the Beery VMI ranged from 0.79 to 0.89 with a mean of 0.82, for the VPT ranged from 0.74 to 0.87 with a mean of 0.81, and for the MCT ranged from 0.71 to 0.89 with a mean of 0.82. For the adult group aged 19–100 years, the Cronbach alpha coefficients for the Beery VMI ranged from 0.85 to 0.94 with a mean of 0.89, for the VPT ranged from 0.83 to 0.93 with a mean of 0.88, and for the MCT

0.94 with a mean of 0.89, for the VPT ranged from 0.83 to 0.93 with a mean of 0.88, and for the MCT ranged from 0.84 to 0.89 with a mean of 0.86 (Beery and Beery 2010). The Standard Errors of Measurement (SEMs) for the Beery VMI, VPT, and MCT designed for children ages 2–17 were 5.5, 6, and 6, respectively (Beery and Beery 2010). The SEMs for the Beery VMI, VPT, and MCT for adults ages 18–100 years were 5, 5, and 6, respectively (Beery and Beery 2010).

Related to test-retest reliability, the Beery VMI sixth edition, VPT, and MCTwere administered to 142 children between the ages of 5 and 12 years presenting with a range of abilities. “The time between initial administration and the retest averaged 14 days. The overall test-retest coefficients were .88 for the Beery VMI, .84 for Visual Perception, and .85 for Motor Coordination” (Beery and Beery 2010, p. 107). In the Beery VMI manual, 1-week test-retest reliability coefficients for a sample of

2010, p. 107). In the Beery VMI manual, 1-week test-retest reliability coefficients for a sample of 20 adult participants aged 60–69 years were reported as 0.88, 0.86, and 0.84 for the Beery VMI, VPT, and MCT, respectively (Beery and Beery 2010). For inter-rater reliability, the Beery VMI Manual reported the results of two individuals who independently scored 100 Beery VMI, VPT, and MCT forms randomly selected from the sample of the children’s norming group. “The resulting interscorer

forms randomly selected from the sample of the children’s norming group. “The resulting interscorer reliabilities were .93 for the Beery VMI, .98 for Visual Perception, and .94 for Motor Coordination” (Beery and Beery 2010, p. 108). Similarly, based on a randomly selected sample of 25 adults from the norming sample, inter-rater reliability coefficients of 0.94, 0.97, and 0.92 were obtained from the Beery VMI, VPT, and MCTs, respectively (Beery and Beery 2010). No information on intra-rater

the Beery VMI, VPT, and MCTs, respectively (Beery and Beery 2010). No information on intra-rater reliability was reported in the Beery VMI manual for child or adult versions of the Beery VMI, VPT, and MCT.

Types of validity often reported for tests include content validity, criterion-related reliability, and construct validity. Two subtypes of criterion-related reliability frequently included are concurrent validity and predictive validity while subtypes of construct validity often reported include factor analysis validity, discriminant validity, convergent validity, divergent validity, and rating scale validity. Content validity was established for the Beery VMI, VPT, and MCT through an

rating scale validity. Content validity was established for the Beery VMI, VPT, and MCT through an extensive literature review and based on clinical experience of the author. Concurrent validity evidence was established by correlating the Beery VMI with the Copying subtest of the Developmental Test of Visual Perception – 2nd edition (DTVP-2) and the Drawing subtest of the Wide Range Assessment of Visual-Motor Abilities (WRAVMA). The correlation between the Beery VMI and the DTVP-2 Copying

of Visual-Motor Abilities (WRAVMA). The correlation between the Beery VMI and the DTVP-2 Copying subtest was 0.75 and 0.52 with the WRAVMA Drawing subtest. A correlation of 0.62 was obtained between the VPT and the DTVP-2 Position-in-Space subtest while a correlation of 0.65 was obtained between the MCT and the DTVP-2 Eye-Coordination subtest (Beery and Beery 2010). “These results generally support the validity of the Beery VMI and its supplemental tests, although correlations are only

support the validity of the Beery VMI and its supplemental tests, although correlations are only moderately high between the Beery VMI and the newer, less well-developed geometric form-copying tests [the DVTP-2 and the WRAMA]” (Beery and Beery 2010, p. 111).

Predictive validity evidence of the Beery VMI has also been reported with visual-motor integration (VMI) skills being found to be effective predictors of reading difficulties, letter identification, reading readiness, school-related problems, school achievement, and school grade failures and retentions in children (Goldstein and Britt 1994; Pianta and McCoy 1997). “Generally, researchers have found the Beery VMI to be a valuable predictor, particularly when used in combination with other

found the Beery VMI to be a valuable predictor, particularly when used in combination with other measures” (Beery and Beery 2010, p. 121).

Extensive construct validity information is reported in the Beery VMI manual in the form of seven hypotheses. Firstly, the skills measured by the Beery VMI, VPT, and MCT are related to chronological age. The Pearson correlation coefficients between the Beery VMI, VPT, and MCT and the ages of the children’s total norming sample were 0.89, 0.85, and 0.84, respectively. Secondly, it was hypothesized that the abilities measured by the Beery VMI, VPT, and MCT would at least be moderately correlated

that the abilities measured by the Beery VMI, VPT, and MCT would at least be moderately correlated with one another. The correlation between the Beery VMI and VPT was 0.36, between the Beery VMI and the MCT was 0.30, and between the VPT and the MCT was 0.46 (Beery and Beery 2010). Thirdly, the authors provided evidence that the VPT and MCT each measure a part, but not the entirety, of what the Beery VMI measures. In other words, the “Beery VMI whole is greater than the sum of its parts [the VPT

VMI measures. In other words, the “Beery VMI whole is greater than the sum of its parts [the VPT and MCT]” (Beery and Beery 2010, p. 115).

Fourthly, it was proposed that the Beery VMI, VPT, and MCT would be related to the nonverbal aspects of intelligence. The manual reports correlations between the Revised Wechsler Intelligence Scale for Children (WISC-R) and the Beery VMI, VPT, and MCT for a sample of 17 children between the ages of 6 and 12 years. The correlations between the WISC-R Verbal IQ and the Beery VMI, VPT, and MCT were 0.48, 0.43, and 0.41; between the WISC-R Performance IQ and the Beery tests were 0.66, 0.58, and

0.48, 0.43, and 0.41; between the WISC-R Performance IQ and the Beery tests were 0.66, 0.58, and 0.55; and between the WISC-R Full IQ and the Beery tests were 0.62, 0.54, and 0.51, respectively (Beery and Beery 2010). The fifth proposition was that the Beery VMI, VPT, and MCT would be related to academic achievement. In the manual correlations between the Comprehensive Test of Basic Skills and the three Beery tests were reported as 0.63, 0.29, and 0.40 (Beery and Beery 2010). The sixth

and the three Beery tests were reported as 0.63, 0.29, and 0.40 (Beery and Beery 2010). The sixth hypothesis stated that the Beery VMI, VPT, and MCT measure similar traits and are effective in measuring persons. Using the Rasch Measurement Model, evidence of high item and person separation indices were reported thus confirming this hypothesis.

The seventh hypothesis proposed that the Beery VMI, VPT, and MCT would be sensitive to certain disabling conditions with groups of participants with known diagnoses would obtain lower test scores. A multitude of studies have been published documenting that the Beery tests are able to differentiate groups with a variety of clinical conditions including learning disabilities, dyspraxia, dysgraphia, mental retardation, visual impairment, ASD, spina bifida, fetal alcohol syndrome, leukemia,

mental retardation, visual impairment, ASD, spina bifida, fetal alcohol syndrome, leukemia, Tourette syndrome, cerebrovascular accident, traumatic brain injury, Parkinson’s disease, amyotrophic lateral sclerosis, multiple sclerosis, dementia, and Guillain-Barre Syndrome to name a few.

The Beery VMI has five main weaknesses in relation to its psychometric properties. Firstly, no intra-rater reliability data is reported in the test manual. Secondly, with the extension of the Beery VMI to include 2-year olds as well as adults aged 19–100 years, it is not clear whether the current version adequately measures VMI in these two participant age groups since much of the reliability and validity data reported in the test manual are based on studies that used earlier editions of the

validity data reported in the test manual are based on studies that used earlier editions of the Beery VMI (Graham 2007). Thirdly, limited construct validity information about the VPT and the MCT are reported in the test manual. Fourthly, the Beery VMI manual cites a number of studies as evidence of its predictive validity; however, few of them are less than 5-years old. The rest of the cited studies are quite dated being 10–25+ years old (McKnight and Chandler 2007). Finally, the Beery VMI

studies are quite dated being 10–25+ years old (McKnight and Chandler 2007). Finally, the Beery VMI manual does not report any validity information related to the consequences of its use, either positive or negative (American Educational Research Association, American Psychological Association and National Council on Measurement in Education 1999).

In a recent study, Lim et al. (2015) examined the cross-cultural validity of the Beery VMI by establishing whether there was a difference in children’s visual-motor integration performance between Singaporean and American preschoolers as well as if there were any differences in the visual-integration skills of three ethnic groups residing in Singapore: Chinese, Malay, and Indian preschoolers. This would provide insights about the use and applicability of the Beery VMI in cross-cultural

This would provide insights about the use and applicability of the Beery VMI in cross-cultural contexts like Singapore. The Beery VMI 5th edition was completed by 385 preschoolers (mean age ¼ 63.3 months) from randomly selected schools in Singapore. The Beery VMI scores of the Singaporean preschoolers were compared with the standardization norms from the United States. The results indicated that there were statistically significant differences between Singaporean and American preschoolers,

there were statistically significant differences between Singaporean and American preschoolers, Chinese and Malay preschoolers from Singapore, and Chinese and Indians preschoolers in Singapore. Lim et al. (2015) concluded that preschool-age children “from different cultural and ethnic groups had different VMI performance. Certain cultural beliefs and practices may affect VMI performance” (p. 213).

Brown et al. (2011) investigated the convergent validity between the Beery VMI and the Full Range Test of Visual Motor Integration (FRTVMI) amongst three groups of participants: 73 children aged 5–10 years (mean age 7.5 years, SD ¼ 2.20), 19 adolescents aged 11–17 years (13.1 years, SD ¼ 2.16), and 61 adults (mean age 31.82 years, SD ¼ 11.20). The Beery VMI and FRTVMI scores for the three participant age groups were all significantly correlated. “Overall, the DTVMI and the FRTVMI exhibited

age groups were all significantly correlated. “Overall, the DTVMI and the FRTVMI exhibited large levels of convergent validity with each other, indicating that the two tests appear to measure similar visual-motor integration constructs” (Brown et al. 2011, p. 295).

Using the Rasch model, Brown et al. (2009a, b) inspected the construct validity of the Beery VMI 5th edition. The study involved 400 typically developing children from Victoria, Australia, aged 5–12 years of age. The findings indicated that none of the Beery VMI items “exhibited RMM misfit due to goodness-of-fit mean square (MnSq) infit statistics and standardised z (ZStd) scores being outside the specified acceptable range” (Brown et al. 2009, p. 393). However, Beery VMI item nine

outside the specified acceptable range” (Brown et al. 2009, p. 393). However, Beery VMI item nine demonstrated differential item functioning based on gender. Several of the Beery VMI items were found to have similar levels of difficulty. For example, VMI items 26, 27, and 29; items 18, 22, and 24; and items 4, 5, and 11, were found to have the same level of challenge and this may indicate that some of the items may be redundant. Similarly, the Beery VMI scale item logit measure order did not

some of the items may be redundant. Similarly, the Beery VMI scale item logit measure order did not correspond to that presented in the Beery VMI manual. “Theoretically, the VMI items are developmentally ordered; however, this ordering was not mirrored by the item logit difficulty scores obtained” (Brown et al. 2009, p. 393). In a second study involving the same group of participants, Brown et al. (2009) explored the factor structure of the Beery VMI. The factor analysis results indicated that

(2009) explored the factor structure of the Beery VMI. The factor analysis results indicated that the Beery VMI generated six viable factors thus demonstrating multidimensionality rather than one overall visual-motor integration factor, in other words, unidimensionality.

Wuang and Su (2009) investigated the measurement properties of the Beery VMI using Rasch analysis. A sample of 454 children with an intellectual disability aged 4–12 years of age completed the Beery VMI. The following features were examined: unidimensionality, item fit to the model, differential item functioning, item targeting, and discriminative validity. Wuang and Su (2009) generated a nine-item version of the Beery VMI that was considered valid and reliable for use with children presenting

version of the Beery VMI that was considered valid and reliable for use with children presenting with an intellectual disability instead of the current 30 item version. However, changes to the Beery VMI items can only be made by the test’s authors and the copyright holders.

One of the primary strengths of the Beery VMI is its long history of psychometric validation and reliability studies starting in 1967. It is also easy to use, provides detailed scoring guidelines, and has been standardized on a large sample group. It is widely used internationally and can be administered, scored, and interpreted by a number of health and education professionals. This adds to the versatility and applicability of the Beery VMI as a clinical assessment and research measure.

the versatility and applicability of the Beery VMI as a clinical assessment and research measure. However, one limitation noted by McCrimmon et al. (2012) about the most recent edition of the Beery VMI relates to its “lack of current validity and reliability research. Although the newest edition is based on a strong foundation, much of the psychometric data reported in the manual pertain to previous versions” (p. 592). Therefore it would appear that more current psychometric studies need to be

versions” (p. 592). Therefore it would appear that more current psychometric studies need to be completed. It is recommended that the Beery VMI would be a useful, informative, and appropriate assessment to use with children and adolescents presenting with ASD.

Clinical Uses “The Beery VMI is designed to assess the extent to which individuals can integrate their visual and motor abilities (eye-hand coordination)” (Beery and Beery 2010, p. 1). The Beery VMI, VPT, and MCT can be used for a variety of clinical purposes in a variety of settings with a variety of client groups. As well, the Beery tests can be used on their own or as part of a larger battery of tests. It is often used by psychologists, occupational therapists, educators, neurologists,

of tests. It is often used by psychologists, occupational therapists, educators, neurologists, pediatricians, speech/language pathologists, physiotherapists, optometrists, rehabilitation medicine physicians, low-vision specialists, and others to assess children and adults. The Beery VMI, VPT, and MCT can be used in acute care hospitals, rehabilitation centers, geriatric care centers, community health centers, private practice settings, early intervention centers, and primary and secondary

health centers, private practice settings, early intervention centers, and primary and secondary school settings. The Beery tests have also been widely used to assess the VMI skills of variety of diagnostic groups including those with ASD (see section above). The Beery VMI provides standard scores for children aged 2-years old, which is rare among psychological assessments. In addition, the Beery VMI is designed to be sensitive to developmental change making it useful in testing the

the Beery VMI is designed to be sensitive to developmental change making it useful in testing the effectiveness of interventions and within a Response to Intervention (RtI) framework.

The Beery VMI is often included as part of a comprehensive neuropsychological test battery or as part of a psychoeducational assessment battery completed by psychologists. Educators, psychologists, and occupational therapists often use the Beery tests when evaluating or screening preschool-age and school-age children presenting with known or suspected developmental delays or learning disabilities. For example, the Beery VMI is frequently utilized in early intervention settings by therapists or

For example, the Beery VMI is frequently utilized in early intervention settings by therapists or by kindergarten teachers to screen children’s VMI skills (Dankert et al. 2003). Occupational therapists will often use the Beery VMI, VPT, and MCT to assess children referred to them presenting with sensory-motor problem or printing/writing difficulties (Case-Smith 2002). Optometrists frequently use the Beery tests as part of an initial assessment that includes perceptual and VMI skills (Sorter and

Beery tests as part of an initial assessment that includes perceptual and VMI skills (Sorter and Kulp 2003a). Psychologists and occupational therapists might use the Beery tests in rehabilitation settings to assess the VMI abilities of adults who have sustained a traumatic brain injury or older adults who have had a stroke (Hall et al. 1996). “Through early identification, it is hoped that further difficulties can be prevented or remediated by appropriate educational, medical, or other

further difficulties can be prevented or remediated by appropriate educational, medical, or other interventions” (Beery and Beery 2010, p. 10).

The clinical purposes the Beery VMI, VPT, and MCT could be used for are establishing the baseline of a client’s VMI skills (often done in the context of an initial assessment), assisting with the formulation of a client’s intervention goals, monitoring a client’s progress after receiving intervention/remedial services, or providing evidence to justify the need for a client to receive continued services (Sorter and Kulp 2003b). The Beery tests can also be used for research purposes such as

services (Sorter and Kulp 2003b). The Beery tests can also be used for research purposes such as evaluating the effectiveness of educational, psychological, therapeutic, or medical services provided to clients (Dawson and Watling 2000). For example, Pfeiffer et al. (2015) scrutinized the use of Beery VMI as a potential outcome measure for hand writing interventions with first and second grade primary school students. The study involved 207 students divided into two groups. The first group

primary school students. The study involved 207 students divided into two groups. The first group completed a formal handwriting program while the control group received standard programing. The two groups completed the Beery VMI pre- and post-completion of the handwriting and standard instruction programs. When the pre- and post-completion Beery VMI scores were compared, no significant difference was detected. Pfeiffer et al. (2015) suggests that the Beery VMI may not be the most appropriate

was detected. Pfeiffer et al. (2015) suggests that the Beery VMI may not be the most appropriate outcome measure to uncover clinically significant or skill-related changes in handwriting remediation interventions involving school-age children.

Individuals diagnosed with ASD, Asperger’s Syndrome (AS), and other related pervasive developmental disorders (PDD) often present with VMI problems (Baranek et al. 2005; Dowd et al. 2012; Duffield et al. 2013; Fournier et al. 2010; Fuentes et al. 2010; MacDonald et al. 2014; Mayes and Calhoun 2003a; McPhillips et al. 2014; Novales 2006; Volker et al. 2010). “ASD evaluations need to include assessments of visual-motor control” (Beery and Beery 2010, p. 119). Numerous studies have indicated that

of visual-motor control” (Beery and Beery 2010, p. 119). Numerous studies have indicated that the VMI skills of individuals with ASD and AS are often below average. For example, Volker et al. (2010) assessed the VMI skills of 60 children with high-functioning autism spectrum disorders (HFASDs) and 46 typically developing children using the Bender Visual-Motor Gestalt Test Second Edition (BG-II) and Beery VMI. After statistically controlling for IQ, the HFASD group scored significantly lower

and Beery VMI. After statistically controlling for IQ, the HFASD group scored significantly lower than the typically developing group on the BG-II and Beery VMI with greater motor involvement.

In another recent study, Green et al. (2016) examined the visual-motor integration skills of individuals who presented ASD. An all-male sample consisting of two contrasting groups were recruited into the study: 56 participants with ASD (ages 3 to 23) and 36 typically developing participants. Both groups completed the Beery VMI. The findings indicated that the two groups were significantly different in relation to their visual-motor integration skills as measured by the Beery VMI.

McDonald (2013) compared the visual-motor skills of children presenting with HFASDs. Ninety children with HFASD and 52 typically developing children completed the BG-II using the KOPPITZ-2 scoring system and the Beery VMI. In addition, a subsample of 33 matched pairs was analyzed to examine potential visual-motor differences between groups, while controlling for age, gender, ethnicity, parent education, and verbal ability. McDonald (2013) reported that the children presenting with HFASD had

education, and verbal ability. McDonald (2013) reported that the children presenting with HFASD had significantly lower scores on the BG-II and the Beery VMI, both samples scored significantly lower on the MCT than on the VPT, and a moderate level correlation was obtained between the BG-II and the Beery VMI composite score. These results are similar to those reported by Volker et al. (2010) and Schlooz and Hulstijn (2012).

In a study by Kimberly (2014), 45 participants between the ages of 8 and 14 years of age completed the forty-five participants completed the BG-II, Beery VMI 5th edition, NEPSY Second Edition, Test of Visual Perceptual Skills-3, Navon Task, Kaufman Test of Educational Achievement, Second Edition, Kaufman Brief Intelligence Test, Second Edition, Behavior Assessment Scale for Children, Second Edition, and Autism Spectrum Screening Questionnaire. The sample was composed of 22 males with autism

and Autism Spectrum Screening Questionnaire. The sample was composed of 22 males with autism spectrum disorder and 23 were typically developing. Kimberly (2014) found that there were no significant differences between the two groups on the BG-II, Beery VMI 5th edition, Test of Visual Perceptual Skills-3, and Navon Task. However, students diagnosed with ASD have poorer performance on the NEPSY Second Edition. Regression analyses for visual-motor integration indicated the best predictors for the

Edition. Regression analyses for visual-motor integration indicated the best predictors for the Beery VMI 5th edition was the Test of Visual Perceptual Skills-3. It also determined that the Beery VMI 5th edition was predictive all areas related to academic achievement (Kimberly 2014).

Lopata et al. (2007) assessed the gross motor, fine motor, and visuomotor skills of 17 boys, 6–13 years old, with AS. Statistically significant deficits were found for the sample’s scores on three types of motor skills. Using the WRAVMA, Novales (2006) assessed the VMI skills of 63 children and adolescents with AS ranging in age from 8 to 18 years (with a mean age of 11 years, 2 months) and found that “individuals with AS performed significantly more poorly on most measures of visual-motor

that “individuals with AS performed significantly more poorly on most measures of visual-motor ability when compared to neurotypically developing peers” (p. 2260). In a similar study, Mayes and Calhoun (2003a, b) assessed 63 children with autism ranging in age from 6 to 15 years using a number of IQ tests and found that the children had significantly low scores VMI skills. Therefore, the Beery VMI, VPT, and MCT can play an important role in the assessment of and intervention planning for

VMI, VPT, and MCT can play an important role in the assessment of and intervention planning for individuals presenting with ASD, AS, and PDD. In summary, “the primary purpose of the Beery VMI is to help identify, through early screening, significant difficulties that some children [and adults] have integrating, or coordinating, their visual-perceptual and motor (finger and hand movements) abilities” (Beery and Beery 2010, p. 10). The Beery VMI is recommended as an appropriate assessment for use

(Beery and Beery 2010, p. 10). The Beery VMI is recommended as an appropriate assessment for use with children, adolescents, and adults presenting with ASD.

Visual-Spatial Ability Definition Visual-spatial ability is a broad term that emphasizes processes such as image generation, storage, retrieval, and transformation and includes a collection of skills in the areas of spatial relations, visualization, visual memory, closure speed, and spatial scanning (Mather and Wendling 2005). Because visual-spatial ability is a multi-dimensional construct, it is possible for an individual to have a relative strength in one area of visual-spatial ability

it is possible for an individual to have a relative strength in one area of visual-spatial ability (e.g., visual memory of objects) and a relative weakness in another (e.g., spatial relations; Mather & Wendling).

The visual environment can be organized into a meaningful whole through visual perception (Grieve 2000). Visual perception of an object requires the integration of several features, such as color, depth, separating shapes and objects from their background, and form constancy. Visual object recognition involves integrating visual perception with previous knowledge of known objects. Spatial ability, on the other hand, involves the integration of visual scanning of space, mental representation of

on the other hand, involves the integration of visual scanning of space, mental representation of the relative position of one’s body parts in space, ability to perform the necessary movements for a task, and understanding of the topographical environment (Grieve 2000).

Visual-spatial ability is an area typically measured as part of neuropsychological examinations and may include the assessment of perceptual skills, constructional skills, and spatial awareness (Sattler and Hoge 2006). The Perceptual Reasoning Index on the Wechsler Intelligence Scale for Children, Fourth Edition, which is comprised of the Block Design, Picture Concepts, Matrix Reasoning, and Picture Completion subtests, offers a broad measure of graphomotor, spatial, and visual scanning

Picture Completion subtests, offers a broad measure of graphomotor, spatial, and visual scanning abilities (Sattler & Hoge). An example of a test that measures visual-motor perception is the Bender-Gestalt II. This test includes 16 stimulus cards that each contains a line drawing. Test takers are asked to copy each drawing on a blank piece of paper. A 5-point rating scale is used to score each item, and age-based standard scores are available for the measure (Sattler & Hoge). Another example is

and age-based standard scores are available for the measure (Sattler & Hoge). Another example is the Beery-Buktenica Developmental Test of Visual-Motor Integration, Fifth Edition (Beery VMI-Fifth Edition). This assessment includes 30 items that incorporate spontaneous drawing and copying designs from the stimulus book. Each item is scored as either a 0 or 1, and age-based standard scores can be calculated (Sattler & Hoge).

Historical Background Components of visual-spatial ability, such as object perception and measuring basic properties of vision, have been researched by psychologists since the nineteenth century (Goldstein 2005). As behaviorism and its emphasis on observable behavior, rather than mental processes, became more prevalent in the first half of the twentieth century, less attention was paid to studying cognition. However, the field of psychology returned to an interest in mental processes later in

cognition. However, the field of psychology returned to an interest in mental processes later in the twentieth century (Goldstein 2005). Modern technology, such as brain imaging techniques, has allowed researchers to directly measure physiological activity related to cognition, including visual-spatial processes.

Current Knowledge Neuroimaging research has found some overlap in brain activity during processes that involve visual perception and visual imagery (Sternberg 2006). This research provides support for the functional-equivalence hypothesis, which states that, even though visual perception and visual imagery are not identical, they are functionally equivalent (Sternberg 2006). Research findings have also indicated that visual and spatial imagery may be mentally represented differently (Sternberg

also indicated that visual and spatial imagery may be mentally represented differently (Sternberg 2006). Visual imagery is the use of images that represent characteristics such as shape and color, whereas spatial imagery represents characteristics such as depth, distance, and orientation.

Researchers have also examined how visual-spatial skills develop across the lifespan. Basic spatial understanding, including skills such as spatial visualization, begins to develop in children at a young age (Sternberg 2006). Spatial visualization refers to the capacity to orient oneself in one’s surroundings and to mentally manipulate images of objects (Sternberg 2006). From childhood through young adulthood, the speed of mental rotation increases. Object familiarity has also been shown to

young adulthood, the speed of mental rotation increases. Object familiarity has also been shown to increase mental rotation speed. Middle-aged adults generally have slower mental rotation speeds than young adults but have similar response times for image scanning tasks (Sternberg 2006). Studies have not generally found a strong relationship between visual-spatial ability and academic performance, although some studies have found evidence of an association between visual-spatial ability and math

although some studies have found evidence of an association between visual-spatial ability and math performance (Mather and Wendling 2005). Performance on visual-spatial tasks has been shown to be influenced by speed, attention, motivation, working memory, and visual-motor coordination (Mather & Wendling). Research has found that visual sensory impairment can affect the perception and storage of visual cues, which contribute to visual-spatial ability (Baum and Katz 2010).

Future Directions Current research on cognition, which includes visual-spatial ability, has emphasized an interdisciplinary approach to cognitive neuroscience and has utilized brain imaging techniques to examine relationships between particular brain structures and specific cognitive processes (Goldstein 2005; Sternberg 2006). It is likely that these trends will continue and further contribute to researchers’ understanding of visual-spatial ability.

Vocabulary Synonyms Lexicon; Messages; Words  Definition Vocabulary is a set of words that a person knows. Typically, vocabulary is described as receptive and expressive. Receptive vocabulary refers to the words that are understood by a person, typically assessed by having the person point to a picture that is named. Expressive vocabulary refers to the words that a person can produce and is typically assessed by showing the person a picture and having them name the word depicted. Individuals

assessed by showing the person a picture and having them name the word depicted. Individuals with autism may use speech, sign, typing, or pointing to picture symbols to demonstrate their expressive vocabulary skills. People with autism may have vocabulary skills that are within the normal range of functioning or may have an impairment in one or both types of vocabulary.

Vocalization Synonyms Babbling; Cooing; Prelinguistic sounds  Definition Vocalizations are sounds produced by children before they learn to talk. For children with ASD, vocalizations may continue to be used throughout the life span, particularly if spoken language does not develop. Vocalizations can be divided into two categories: speech-like and nonspeech. Speech-like vocalizations include consonant and vowel sounds (e.g., baba, daba) and are often referred to as babbling or cooing. Nonspeech

and vowel sounds (e.g., baba, daba) and are often referred to as babbling or cooing. Nonspeech vocalizations are natural, vegetative sounds that do not resemble speech, such as crying, laughing, burping, as well as uncommon sound productions such as high-pitched squeals and low-pitched growls. A higher frequency and longer persistence of atypical vocalizations has been found to be present in children with ASD and in infants at high risk for the syndrome, before spoken language emerges.

Vocational Evaluator Synonyms Job counselor; Vocational counselor  Definition A vocational evaluator is a professional whose goal is to help people match a career path to their interests, abilities, knowledge, personality, and skills. The evaluator’s focus is to help integrate their clients into the workplace. The evaluator minimally holds a bachelor’s degree with vocational evaluation specialization. Evaluators typically work in settings such as hospitals, schools, public agencies, and

Evaluators typically work in settings such as hospitals, schools, public agencies, and independent living centers and are sometimes in private practice. A certified vocational evaluator (CVE) has received national certification by the Commission on Certification of Work Adjustment and Vocational Evaluation Specialists (CCWAVES).

When evaluating clients on the autistic spectrum, the vocational evaluator will use a variety of instruments. These will provide information about the client’s medical, psychological, social, vocational, educational, economical, and cultural history and abilities. The evaluator may assess such areas as being able to understand socially appropriate behaviors, the quality of communication skills, functional academics, and problem-solving skills. The evaluator will also look at the client’s

functional academics, and problem-solving skills. The evaluator will also look at the client’s work-related behaviors, such as the ability follow directions and to complete tasks successfully, maintain an appropriate rate of work, follow rules, stay on task, and complete multistep assignments. The outcome of the evaluation is a comprehensive report containing specific recommendations. This report can be used to guide the client and/or counselor in developing appropriate client employment goals.

Vocational Rehabilitation Act of 1973 Definition The Vocational Rehabilitation Act of 1973 Title V was put in place to correct the problem of discrimination against people with disabilities in the United States. Affirmative action programs were established in Title V, Sections 501, 502, 503, and 504. Individuals who qualify as having a disability have experienced discrimination both because of negative attitudes in regard to their ability to be an effective employee as well as the physical

negative attitudes in regard to their ability to be an effective employee as well as the physical barriers at work facilities. The Title V of the Vocational Rehabilitation Act requires private employers with federal contracts over $2,500 to take affirmative action to hire individuals with a mental or physical disability. While this means that employers must make reasonable accommodations for disabled employees, it does not mean they must hire unqualified individuals. There are additional

disabled employees, it does not mean they must hire unqualified individuals. There are additional sections of the Act that provide vocational counseling, training assistance, and job placement for individuals with severe disabilities.

In the context of the Vocational Rehabilitation Act, the term “disabled individual” means “any person who (1) has a physical or mental impairment which substantially limits one or more of such person’s major life activities, (2) has a record of such impairment, or (3) is regarded as having such an impairment.” This definition is closely related to the definition provided by the Americans with Disabilities Act. The Vocational Rehabilitation Act does not require employers to hire or retain a

Disabilities Act. The Vocational Rehabilitation Act does not require employers to hire or retain a disabled person if the individual has a contagious disease that poses a direct threat to the health and safety of others, and the individual cannot be accommodated. Also, employment is not required if the disability prevents the individual from being able to perform a required part of the job or if the individual would be considered unqualified for the job regardless of their disease or

job or if the individual would be considered unqualified for the job regardless of their disease or disability.

Vocational Training Definition Vocational training is a form of education that is practically oriented. Individuals who are enrolled in vocational training are learning skills specific to a particular occupation or job. These occupations tend to be manual jobs by nature and are in the mechanical arts or some other form of industry, agriculture, or trade. The education is less academically oriented with an emphasis upon practical skills and apprenticeship work. The students learn the trade by

with an emphasis upon practical skills and apprenticeship work. The students learn the trade by doing supervised work. Extensive practical experience is given in lieu of learning theory, technical knowledge, or following a liberal arts education.

Historical Background The history of vocational training is as long as humans have been involved in organized activity for survival and commerce. The training of individuals was conducted by the family, tribe, or later village members. Often, young children of impoverished families were put in the care of skilled craftsman or better-educated individuals as a way of the child to learn vocational skills as an apprentice or indentured servant. This insured both the child’s and the family’s

skills as an apprentice or indentured servant. This insured both the child’s and the family’s survival. During the later part of the medieval and into the Renaissance periods, Western Europe would see the rise of the university which led to a new educational and economical structure and system. The impact of the rise of the university would be upon the class system. No longer would only the nobility be able to read and write, but a new class of citizens would have this skill set. A university

be able to read and write, but a new class of citizens would have this skill set. A university education led to new jobs in the economic structure. A university education began to be a viable path to economic survival for an individual. Apprenticeships were now not the only way to learn vocational skills and gain employment.

The industrial revolution also contributed to the change in the way individuals learned job skills. The economic structure shifted from cottage-based industries where family members taught children how to work and create products to be sold outside of the home and to mass-produced products manufactured in factories to be sold to the public on a large scale. The creation of the assembly line method meant that individuals went from being skilled craftsmen responsible for the creation of a

method meant that individuals went from being skilled craftsmen responsible for the creation of a product from start to finish to workers who specialized in the completion of one aspect of the overall product. This was often repetitive and dangerous work. The industrial revolution also shifted where the population lived. Prior to the industrial revolution, the greatest proportion of the population lived in agrarian centers or sparsely populated villages surrounded by farms. With the advent of

lived in agrarian centers or sparsely populated villages surrounded by farms. With the advent of the factory, the population shifted to large urban centers living near the factories where they were employed. “Improvements in transportation and communication - roads, canals, and railroads - brought communities closer together, stimulating the exchange of goods and services as well as the growth of cities” (Barlow 1976, p. 31).

There was no coordinated effort to begin vocational training in the United States or abroad. An educational system was in its nascent stage in the United States. Each state was responsible for the creation of an educational system since there were no constitutional provisions for a national educational system. Horace Mann, Secretary of the Massachusetts State Board of Education (1837–1849), would be credited with the revolutionary concept of free, public, universal education. The concept of

be credited with the revolutionary concept of free, public, universal education. The concept of the common school was beginning to take root in the country. The common school was what we would refer to as primary education in today’s terms. Secondary education was a radical idea, and the notion of public tax dollars being spent to fund schools was highly controversial. High schools, which would become the home base for vocational training, were rare. According to Barlow (1976), there were only

the home base for vocational training, were rare. According to Barlow (1976), there were only 60 high schools in the entire country by 1850. The Manual Labor Movement, the Hampton Institute, the Morrill Act, and the Kalamazoo Case all converged during this time period to influence the formation of vocational education.

The Manual Labor Movement was led by farmers, mechanics, and artists. In England, in the early nineteenth century, the Mechanics’ Institute was formed. It attempted to “regain the educational values lost with the coming of the factory system” (Barlow 1976, p. 32). During the 1820s, the Franklin Institute, the Maryland Institute for the Promotion of Mechanic Arts, and the Ohio Institute of Cincinnati were established in the cities of Philadelphia, Baltimore, and Cincinnati, respectively. These

were established in the cities of Philadelphia, Baltimore, and Cincinnati, respectively. These institutes all had reading rooms, libraries, public lectures, cabinets of models and apparatuses, and day and night schools, among their offerings. Educational reformers such as Emma Willard, Catherine Beecher, Mary Lyon, and Ellen Richards began to question the prevailing notion that the woman’s place was in the home. Lyon established Mount Holyoke Female Seminary in 1837. Women began to attend

was in the home. Lyon established Mount Holyoke Female Seminary in 1837. Women began to attend postsecondary training, and Elmira College granted the first college degrees to women in 1855 (Barlow 1976). The home economics movement was born during this time period which was a precursor to independent living skills training for individuals on the autism spectrum.

The Hampton Institute is the acknowledged beginning of the Trade School Movement. After the Civil War, a great debate raged in the country regarding whether freed Negroes should have a classical education or an industrial education. As early as 1853, Frederick Douglas advocated for industrial schools for Negroes, while Harriet Beecher Stowe provided financial backing for either an industrial school or a classical education for freed Negroes. General Samuel Chapman Armstrong commanded a

school or a classical education for freed Negroes. General Samuel Chapman Armstrong commanded a regiment of Negro soldiers during the war and worked as the superintendent of education under the Freedmen’s Bureau. He organized the Hampton Institute for the training of Negroes in skilled manual labor. Armstrong viewed a skilled Negro labor force as essential to the reconstruction of the South post-Civil War, and he felt that a liberal education was essential to improving the Negroes social status

War, and he felt that a liberal education was essential to improving the Negroes social status (Barlow 1976). The Hampton Institute offered vocational training in trades, many of which are still offered in vocational training centers to this day (e.g., plumbing, carpentry, mechanics, upholstering).

The passage of the Morrill Act in 1862 made it possible for states to establish universities. The idea was the brain child of Jonathon Baldwin Turner who believed that society was composed of two classes: a professional and an industrial class. His dream was to establish an industrial university in each state. To fund his dream, he proposed that federal aid be generated through the sale of public lands. Farmers in his home state of Illinois enthusiastically supported the idea. “The act of

lands. Farmers in his home state of Illinois enthusiastically supported the idea. “The act of donating public lands to establish colleges for the benefit of agriculture and the mechanical arts called for land grants to states based on their representation in Congress- 30,000 acres for each senator and representative” (Barlow 1976, p. 38). President Lincoln signed the bill into law on July 2, 1862.

The Kalamazoo case represented a major turning point in education and the establishment of vocational training in high schools. The majority of the educational reform thrust was focused upon primary school or the common school as it was called. Students were not expected to receive a public education beyond the 8th grade. In 1874, the Michigan Supreme Court heard the case where citizens from Kalamazoo brought forth a suit against the school districting disputing the right to collect taxes to

brought forth a suit against the school districting disputing the right to collect taxes to support local public high schools. The court ruled against the plaintiffs finding an inconsistency between the provision of primary schools and state universities and forcing parents to find private education to prepare students for higher studies. This provided the right to equal access to higher education for all. It established the right of school districts to levy taxes to support high schools.

for all. It established the right of school districts to levy taxes to support high schools. However, it would not be until well into the twentieth century that vocational training would become a part of the high school curriculum (Barlow 1976).

In the United States after the American Civil War, Abner Flexner began a crusade to reform the medical training of doctors and later higher education as a whole. Doctors were primarily trained through apprenticeships with no standards for their training and no standards for the people who trained them. Virtually anyone could call themselves a doctor, and any institution could call themselves a medical school (Starr 1982). Flexner led the reform of not only medical schools but university

a medical school (Starr 1982). Flexner led the reform of not only medical schools but university education in general. This led to the closing of over half of the medical schools across the country. It also led to the questioning of many groups as to whether or not they were indeed a profession and what a profession was in general. Did they as a group have a unique skill set, an ethical code, and a transmittable knowledge base? Having a transmittable knowledge base distinguished a profession

a transmittable knowledge base? Having a transmittable knowledge base distinguished a profession from a trade. It also meant that professionals went onto higher education through the nation’s system of colleges and universities, whereas skilled craftsman learned their craft through vocational or trade schools.

Rationale or Underlying Theory The rationale for training individuals with ASDs specifically to work is that many have a desire to work and be productive members of society. Otherwise, society must support these individuals who have an average life expectancy that is well over 70 years of life. Although no specific epidemiological data are available on the unemployment rates of people with ASDs, anecdotal evidence suggests their unemployment rate is around 90% (Gerhardt 2011, personal

ASDs, anecdotal evidence suggests their unemployment rate is around 90% (Gerhardt 2011, personal communication). The costs of not providing vocational training are staggering from a fiscal and emotional perspective. Tax credits are available to employers who train and hire individuals with disabilities.

Goals and Objectives The goals of vocational training for individuals with ASDs are to match the interests, aptitudes, and job availability with the individual in order for the person to work in a setting with the highest level of independence and community integration possible. This means the vocational goals must be individualized. In addition to specific job skills, the objectives should include the adoption on prevocational skills that will guarantee employment success. These objectives

the adoption on prevocational skills that will guarantee employment success. These objectives should include demonstrating appropriate dress for employment; good hygiene; the ability to cook and feed one’s self before, during, and after working; and the ability to transport one’s self to and from work.

Treatment Participants Treatment participants are those individuals on the autism spectrum who have a desire to learn how to work.

Treatment Procedures Vocational training is not a treatment per se. Rather, it is an educational approach that focuses upon teaching skills that are directly related to a particular occupation. The training is practical in nature and focuses upon how to complete a task or job. This differs from professional training where the education is less directly related to tasks performed by a specific occupation. Professional training often teaches theory, ethics, and how to think and problem solve.

occupation. Professional training often teaches theory, ethics, and how to think and problem solve. These skills are applied generally to a wide variety of work-related situations. Vocational training, by contrast, teaches how to complete specific tasks.

Prior to engaging in vocational training of an individual with autism, one must complete a thorough evaluation of the person’s strengths, areas of difficulty, interests, and aptitudes. For younger individuals, the evaluations can be conducted through the local school district. IQ tests and assessments of reading, writing, and math ability are conducted on a triennial basis as a part of the special education system and are part of writing an Individualized Education Plan (IEP) under the

special education system and are part of writing an Individualized Education Plan (IEP) under the Individuals with Disabilities Education Act (IDEA). Under IDEA, students beginning at age 14 should have a transition plan written describing the goals for the student and how the student will reach those goals. The goals in the transition plan typically are focused upon vocational training or postsecondary education. The evaluators will need to conduct vocational assessments and examine things

education. The evaluators will need to conduct vocational assessments and examine things like fine motor skills, especially if the individual is interested in an occupation that involves a great deal of eye-hand coordination. An occupational therapist who is a part of the school-based support team can conduct such an assessment. Part of the occupational therapist’s evaluation may include an assessment of assistive technology. Functional assessments for assistive technology are not covered by

of assistive technology. Functional assessments for assistive technology are not covered by IDEA. These assessments are a part of Assistive Technology Act of 2004, P.L. 108-364; 29 U.S.C 3001 et seq.

Older individuals with autism can receive vocational assessments through state offices of vocational and rehabilitative services. The state office of vocational rehabilitative services or office of persons with developmental disabilities may subcontract these services to private not for profit social service agencies. The exact names of these offices vary by state. Consequently, keyword searches for these offices require the use of a variety of synonyms. These state services will not only

for these offices require the use of a variety of synonyms. These state services will not only evaluate the individual through the use of paper and pencil or computerized aptitude tests and interest inventories, but they will conduct observations of the individuals in work settings to evaluate the goodness of fit between the individual and the job setting. Working with the individual employees of the office of vocational and rehabilitative services will develop an Individualized Plan for

of the office of vocational and rehabilitative services will develop an Individualized Plan for Employment (IPE) also known as an Individualized Employment Plan (IEP) which is distinct and separate from an Individualized Educational Plan (IEP) under IDEA. The Individualized Plan for Employment (IPE) is a document that outlines the plan for the individual seeking employment through a series of behaviorally specific goals with fixed deadlines and outcomes. It will specify the type of training he

specific goals with fixed deadlines and outcomes. It will specify the type of training he or she will receive and who will provide the services and where those services will take place. This IPE can help the person obtain assistive technology in order to attend a community college. The IPE can also prescribe other types of supports that the person will need in order to be successfully employed. The other types of support can be learning to drive a car or travel training on mass transit, so the

other types of support can be learning to drive a car or travel training on mass transit, so the individual can get to work or to attend resume writing workshops or job interview clinics.

After the individual has been evaluated and assessed and his or interests and aptitudes have been determined, then an assessment of the current and future job markets should be conducted to insure the long-term employment of the individual with autism. One excellent source of information is the US Department of Labor, Bureau of Labor Statistics. This department publishes a number of documents which are free to the public. One document in particular, the Occupational Outlook Handbook (OOH), is

are free to the public. One document in particular, the Occupational Outlook Handbook (OOH), is available on a yearly basis. This report informs readers the type of training and education needed by occupational title, the expected earnings of individuals in a vocation, the expected job prospects, a description of what workers do in an occupation, and the working conditions someone faces with a particular job title.

Once an individual with autism has had their aptitudes, abilities, and vocational interests assessed and those have matched with the employment outlook for a particular vocation, then the individual must decide where to obtain the vocational training. There are three general places to obtain training for future employment: traditional vocational training programs, supported academic programs, and comprehensive transition and postsecondary programs (CTPs). Traditional vocational training

and comprehensive transition and postsecondary programs (CTPs). Traditional vocational training programs may begin in high school. Some are integrated into the standard high school curriculum. Others are structured as alternative high schools. A third permutation of the traditional vocational training center is a county or municipal training center that draws from a larger catchment area than the local high school. This third permutation may include students who are receiving postsecondary

the local high school. This third permutation may include students who are receiving postsecondary training, and these training programs often work with state offices of vocational and rehabilitative services. A final option for traditional vocational training is a private vocational training or “tech” school. The final option is not one that an individual on the autism spectrum should have to pursue. Private vocational training centers charge a tuition, and their students should be eligible

pursue. Private vocational training centers charge a tuition, and their students should be eligible for federal student aid. However, students on the autism spectrum should be entitled to vocational training through state offices of vocational rehabilitative services or state offices of persons with developmental disabilities. They do not need to pay tuition for vocational training.

Most people are familiar with the variety of occupations available to students who attend vocational training. The most common occupations that readily come to mind are automotive repair, plumbing, carpentry, electrical repair, cosmetology, culinary arts, clerical skills, and retail. However, there are a number of other occupations that do not readily come to mind. Some vocational centers offer veterinary assistant, small animal care, physical therapy and occupational therapy assistant,

offer veterinary assistant, small animal care, physical therapy and occupational therapy assistant, digital photography, and personal trainer certificate programs. Many individuals on the autism spectrum who are higher functioning have an acute interest in computers. However, many do not see the utility in obtaining a liberal arts degree in computer science, computer engineering, or computer graphics. They refuse to take the English or humanities courses that are required to fulfill the degree

They refuse to take the English or humanities courses that are required to fulfill the degree program because the course is not directly related to working with computers. Many vocational training centers will offer certification courses in computer programming, networking, and/or repair. Others will offer certification courses in specific software applications. Data entry for individuals on the autism spectrum, who are interested in this occupation, is often a good choice for those individuals

spectrum, who are interested in this occupation, is often a good choice for those individuals who prefer predictability and routine. Some businesses have found that individuals on the autism spectrum who are in data entry fields have higher accuracy rates than their neurotypical peers (Bennett 2009). Consulting the Occupational Outlook Handbook for fields that have the most projected openings will help maximize the chances of the person becoming employed.

The second place or type of program where higher functioning individuals on the autism spectrum can receive vocational training is through supported academic programs at colleges and universities. The training one receives at college or university is less directly related to a specific vocation. The notion is that the liberal arts education is meant to teach an individual how to think and problem solve. It is up to the individual to apply what he or she has learned to the work environment.

solve. It is up to the individual to apply what he or she has learned to the work environment. Experiential learning through service learning programs or internships is the most direct form of vocational training at colleges or universities. Supported academic programs at colleges and universities are charged with insuring that the institution is in compliance with the Americans with Disabilities Act. This often occurs through the college’s Disabled Student Services (DSS) office (although some

Act. This often occurs through the college’s Disabled Student Services (DSS) office (although some colleges are beginning to offer programs specifically designed to support higher functioning individuals on the autism spectrum). This office is charged with insuring that the individual with a disability is not denied access to or the benefits of the university solely on the basis of his or her disability. The student must be “otherwise qualified” to attend the university which means they must

The student must be “otherwise qualified” to attend the university which means they must have the intellectual ability to meet the academic demands of a degree program. The DSS office will assist the student with a disability by either altering the environment (e.g., providing notetakers or allowing testing in alternative venues) or by modifying the behaviors or the skills of the student (e.g., teaching organizational skills or providing stress management workshops). The range of remedial and

teaching organizational skills or providing stress management workshops). The range of remedial and supportive services is wide due to how the organization interprets ADA. The DSS offices are generally very good at providing reasonable accommodations that involve academic interventions. Colleges are less adept at providing accommodations in the social or sensory integration realms.

Many higher functioning individuals on the autism spectrum are quite comfortable with the structure of the academic demands of college courses. Individuals on the autism spectrum have difficulty, not with the academic demands but rather with the independent living, executive functioning, and social skills demands of living in a university environment (VanBergeijk et al. 2008). In order for universities to be successful places for vocational training for individuals with ASDs, they must provide

to be successful places for vocational training for individuals with ASDs, they must provide the structure and scaffolding necessary to address these deficits. Otherwise, students with ASDs will not be able to access the benefits of the university degree because of the nature of their disability. Colleges must target students with ASDs to also participate in resume writing, interviewing, and job search workshops in order for these students to be successfully employed. The Health Center at

job search workshops in order for these students to be successfully employed. The Health Center at George Washington University and Thinkcollege.net are two sources that are helpful in identifying supported academic programs for students with a variety of disabilities.

The third place students with autism can receive vocational training is a Comprehensive Transition and Postsecondary program (CTP). CTPs combine aspects of traditional vocational training programs and supported academic programs. This hybrid model focuses upon vocational, independent living, social, and academic skills training. These programs are more individually tailored and do not necessarily result in a college degree. Their goals are to either transition the individual into the world of

result in a college degree. Their goals are to either transition the individual into the world of work and independent living or transition the individual with an intellectual disability into a degree-bearing program full time. A CTP can last longer than a traditional 4-year degree program. Most CTPs have four key components: (1) supported employment and work skills training, (2) adult life skills training (e.g., financial management, grocery shopping, laundry, and home maintenance), (3) social

training (e.g., financial management, grocery shopping, laundry, and home maintenance), (3) social and personal relationships counseling and training, and (4) encouraged social involvement in the community. The best practices of CTPs are (a) using group modality, (b) involving the family, (c) developing community partnerships, (d) taking a long-term approach by following up with graduates, and (e) ongoing evaluation. Involvement of the family distinguishes this model from supported academic

(e) ongoing evaluation. Involvement of the family distinguishes this model from supported academic programs and traditional vocational training programs where the expectation is that the family will generally not be involved in the process.

There are two subtypes of Comprehensive Transition and Postsecondary Programs (CTPs), and the distinction is important. The first subtype is a college-affiliated CTP. Generally, college-affiliated CTPs are either not for profit or for profit private social service agencies that are based out of an apartment complex or group housing situation. They are not formally a part of a college or university. However, they may have a memorandum of understanding with a local community college which

However, they may have a memorandum of understanding with a local community college which outlines the relationship between the agency, the college, and the students with a variety of disabilities, not just autism spectrum disorders. College-affiliated CTPs are ideal for individuals on the autism spectrum who have difficulty generalizing independent living skills across environments. Individuals are taught independent living skills in their own apartments. The second type of CTP is the

are taught independent living skills in their own apartments. The second type of CTP is the college-based CTP. College-based CTPs are an official program or department of the college or university and draw upon its infrastructure. The distinction between the two subtypes is important in terms of Federal Financial Aid. Students with intellectual disabilities who are enrolled in a college-based CTP that is recognized by the US Department of Education are eligible to complete the Free Application

that is recognized by the US Department of Education are eligible to complete the Free Application for Federal Student Aid (FAFSA). By completing the FAFSA, students with intellectual disabilities including autism may receive Pell Grants, Federal Supplemental Education Opportunity Grants (FSEOG), and student work study monies. Students with intellectual disabilities who are enrolled in college-affiliated CTPs are not eligible for federal financial aid.

Efficacy Information Vocational training in a postsecondary environment is critical to employment for people with any type of disability and especially for those on the autism spectrum. Recall the unemployment rate for individuals with ASDs is around 90%. Obtaining any type of postsecondary training significantly increases the probability that the person with disabilities will be employed. “In fact, employment rates for people with disabilities demonstrate a stronger positive correlation

“In fact, employment rates for people with disabilities demonstrate a stronger positive correlation between level of education and the employment rate than is seen in statistical trends for the general population. . . for individuals with disabilities a university education is highly correlated with vocational options and financial success” (Wehman 2001, pp. 248–249).

Outcome Measurement The ultimate outcome for individuals on the autism spectrum is that they are employed in a competitive work environment with no supports and they are able to fully support themselves. However, there are many other outcomes between this outcome and unemployment and being fully dependent upon others for survival. If competitive employment is the apex of an employment pyramid, then the next level of independence is customized employment. According to Gerhardt (2009),

then the next level of independence is customized employment. According to Gerhardt (2009), customized employment is a “. . .highly specialized derivative of supported employment, supported employment tends to match individuals with previously existing jobs in the community. Customized employment. . . works to create highly individualized, yet economically viable, jobs through active employer negotiation. . .” (p. 20). Supported individualized placements are a third possible employment outcome

. .” (p. 20). Supported individualized placements are a third possible employment outcome where individuals with ASDs are placed in an existing job and are supported by a job coach who provides on the job training. Slowly, the supports of the job coach are withdrawn, while the individual develops natural supports in the environment. A variant of this model is the enclave or cluster model according to Gerhardt (2009). In this model, a job coach works with a small group of people with

according to Gerhardt (2009). In this model, a job coach works with a small group of people with disabilities at a community location. A permutation of the enclave model is the work crew approach, where mobile work crews provide contracted services across a geographic area (e.g., cleaning services or lawn care). Entrepreneurial models involve 1–2 individuals with ASDs who develop a business based upon their own interests. An example of a successful entrepreneurial model started by individuals

upon their own interests. An example of a successful entrepreneurial model started by individuals with ASDs is an auto detailing business. The last two employment outcomes for people with ASDs provide the least integration. Day habilitation programs focus upon “pre-employment” skills and activities of daily living to individuals living in congregate care. There is little risk of being fired at this type of employment facility because of behavioral issues. “The least integrated work setting for

type of employment facility because of behavioral issues. “The least integrated work setting for individuals with ASDs is the sheltered workshop where the focus is solely upon providing enclave like employment experience for adults with developmental disabilities” (Gerhardt 2009, p. 23).

Qualifications of Treatment Providers Traditional vocational training centers are often operated by local or county school districts and receive their auspice from either the state office of education or a state office of vocational and rehabilitative services. Supported academic programs and college-based CTPs operate under the auspices of a college or university. The college or university reports to the state office of education and also the Middle States Commission on Higher Education.

reports to the state office of education and also the Middle States Commission on Higher Education. Colleges must routinely go through a reaccreditation process through the Middle States Commission on Higher Education. Before applying to a college and enrolling in a supported academic program or college-based CTP, the consumer must insure the college is accredited. Otherwise, the degree or certificate granted may be worthless. College-based CTPs also are under the auspices of the US Department

granted may be worthless. College-based CTPs also are under the auspices of the US Department of Education if their students receive federal financial aid. College-affiliated CTPs are not necessarily regulated and do not report to a specific government agency or college administrative office. They are often private businesses.

In terms of the qualifications of instructional personnel at vocational training center, instructors should have the highest levels of certification possible in their trade. Support personnel in disabled student services offices will have a variety of related bachelor’s degrees, and some will have master’s degrees in fields such as higher education administration, counseling degrees, and human resources. Because comprehensive transition and postsecondary programs provide a wider range of

resources. Because comprehensive transition and postsecondary programs provide a wider range of support services, the range of professional qualifications of the staff will be greater. The qualifications at a minimum should be a bachelor’s degree in a helping or education profession. Many will have master’s degrees in social work, education, special education, assistive technology, occupational therapy, nursing, etc. Key administrative personnel should have doctorate degrees in education,

therapy, nursing, etc. Key administrative personnel should have doctorate degrees in education, social work, vocational and rehabilitative sciences, and occupational therapy.

Voice Output Communication Aids Definition Voice output communication aids (VOCAs), also called speech-generating devices (SGDs), are high-tech, augmentative, and alternative communication (AAC) devices that produce speech for an individual who has limited or no means to communicate orally. These AAC systems produce a synthesized or digitized voice for the user. A digitized voice is a live voice that has been recorded and played back. Synthesized voices (also known as text-to-speech engines)

that has been recorded and played back. Synthesized voices (also known as text-to-speech engines) are those that are created by programs called speech synthesizers. Different algorithms are used to create synthesized speech. Some programs use a database of recorded speech and then divide the sample into individual phonemes or diphones (two phoneme combinations) which are then combined to form spoken words. Alternately, whole words can be stored and reproduced. The benefits of a digitized live

words. Alternately, whole words can be stored and reproduced. The benefits of a digitized live voice are the naturalness and intelligibility of the voice output. The drawback is the time and effort required to record a voice to capture every message an AAC user would like to speak. Synthesized speech is judged in terms of naturalness and intelligibility. In the past, synthesized voices sounded very robotic, but the field has made great strides in creating synthesized voices that sound more

very robotic, but the field has made great strides in creating synthesized voices that sound more natural.

VOCAs come in many different shapes and sizes and with a variety of features. The BIGmack (distributed by AbleNet) is a single message switch which produces a digitized voice. When the user presses the switch, the device plays a prerecorded message such as, “I’m hungry.” The BIGmack is an example of a simple VOCA for an individual who either does not need or cannot use complex communication. The Maestro (produced by DynaVox) is an example of a VOCA on the other end of the complexity continuum.

Maestro (produced by DynaVox) is an example of a VOCA on the other end of the complexity continuum. The Maestro is a dynamic device in which the user can combine symbols to form long messages. Messages can also be stored for more efficient access in the future. VOCAs are used with a variety of individuals with speech and language impairments. Some populations include individuals with autism, Down’s syndrome, spinal cord injury, traumatic brain injury, aphasia, dysarthria, amyotrophic lateral

syndrome, spinal cord injury, traumatic brain injury, aphasia, dysarthria, amyotrophic lateral sclerosis (ALS), cerebral palsy, and apraxia of speech.

Historical Background Early AAC strategies in the 1970s for individuals with autism spectrum disorders (ASDs) focused heavily on the use of sign language. The use of visual symbols with individuals with ASDs began in the 1980s. The use of VOCAs is a relatively recent development in the field of AAC mainly due to the wider availability of the technology. For more information on the history of the field of AAC, see the entries on Alternative Communication, Pictorial Cues, and Total Communication

field of AAC, see the entries on Alternative Communication, Pictorial Cues, and Total Communication Approach.

Rationale or Underlying Theory The rationale for using VOCAs is to provide an individual with a voice. Mirenda (2001) described some additional advantages for the use of VOCAs. These include the ideas that “they have the potential to be easily integrated into everyday environments with unfamiliar people” (p. 146) and their use can “facilitate natural interpersonal interactions and socialization by virtue of the speech output they provide” (p. 147). The rationale for using augmentative and

by virtue of the speech output they provide” (p. 147). The rationale for using augmentative and alternative communication can be found in the term itself. AAC is first augmentative. The purpose for this type of intervention is to augment or supplement the speech an individual naturally possess. For some individuals, however, this intervention is an alternative form of communication. These individuals have no means of verbal speech and so need to implement an alternative form. AAC is the means

have no means of verbal speech and so need to implement an alternative form. AAC is the means by which these individuals communicate.

Goals and Objectives The goal for the implementation of VOCAs as with other forms of augmentative and alternative communication (AAC) is functional communication. However, communication with AAC is excruciatingly slow as it has been estimated that an average AAC user communicates at approximately 15 words per minute (Foulds 1987) compared to 150–250 words per minute for speakers (Goldman-Eisler 1986). Therefore, rate of communication should not be expected to occur as fast as spoken

1986). Therefore, rate of communication should not be expected to occur as fast as spoken communication for individuals who use VOCAs.

Treatment Participants Any individual who has impaired communication is a candidate for AAC in general. Therefore, because communication impairments are a hallmark of autism spectrum disorders (ASDs) (Mirenda 2009), most individuals with ASDs are candidates for a total communication approach. Specifically for VOCAs, many individuals with more severe impairments do not use the more complex or powerful devices (Rispoli et al. 2010). Developmentally, the strategy for many clinicians has been to

devices (Rispoli et al. 2010). Developmentally, the strategy for many clinicians has been to introduce picture symbols first and then transition the child to a VOCA when they are “ready.” Cress (2010) suggests that it is “never too early to introduce VOCAs.” She states that a child can use AAC to affect the world and that simple VOCAs can be programmed as cause/effect toys.

Treatment Procedures According to a review by Rispoli et al. (2010), the two main methods of introducing VOCAs are discrete trial training (DTT) and milieu teaching. When requesting was the communication goal, Rispoli et al. (2010) found that DTT was the most common method of instruction, while milieu teaching was common when the goal was social interactions and conversational skills.

Discrete trail training is a procedure used in Applied Behavior Analysis (ABA) approaches. During DTT, the professional and the child work for short periods of time in a structured setting. Five steps make up each trial:
1.  Cue – The professional provides the child with a stimulus. 2.  Prompt – The professional provides assistance to the child. Hand-over-hand assistance is provided during the early stages of learning the behavior and is slowly faded.

3.  Response – The child provides a response to the cue. 4.  Consequence – The professional provides praise or a reward for a correct response or indicates to the child if an incorrect response was given.

5.  Intertrial interval – A 1–5-s interval is given before the next cue. Milieu teaching techniques are used during the child’s everyday activities and are often considered errorless learning. For example, a child who uses a VOCA may express a desire to join a game other children are playing. The professional may help the child chose the correct message on their device such as, “Can I play too?” See the encyclopedia entries in this volume for more information on these treatment approaches.

Efficacy Information Van der Meer and Rispoli (2010) conducted a review of intervention studies which used VOCAs with children with autism spectrum disorders (ASDs). The studies reviewed were conducted between 1998 and 2009. Most of the studies (83%) employed a single-subject research design. There were no instances of a large group design using randomized control trials. Requesting was the most frequently targeted communication skill. The majority of the studies (78%) had positive outcomes

frequently targeted communication skill. The majority of the studies (78%) had positive outcomes for the targeted communication skill and were also classified as demonstrating conclusive evidence. The authors cautioned that although encouraging, not all studies reviewed demonstrated conclusive evidence and so the results should be interpreted carefully. Generalization or some form of follow-up was only included in a small number of studies demonstrating a need for further research in this area.

only included in a small number of studies demonstrating a need for further research in this area. Overall, VOCAs were shown to be a “potentially effective option for teaching communication skills to children with ASD” (p. 304).

Outcome Measurement Because the goal of any AAC use is functional communication, the outcome measurement should be the same. Functional communication of course will be defined differently based on the cognitive skills of the individual and the type of AAC system that is in place.

Qualifications of Treatment Providers AAC interventions are most typically introduced by a speech-language pathologist. Unfortunately, many speech-language pathologists do not report having adequate training or education in the field of AAC (King 1998; Marvin et al. 2003; Simpson et al. 1999), and a survey of education programs for speech-language pathologists has uncovered a need for better education in this area (Ratcliff et al. 2008). Although this is the case, speech-language pathologists

in this area (Ratcliff et al. 2008). Although this is the case, speech-language pathologists are the best equipped of all professionals who work with individuals with autism to provide intervention that includes AAC. A listing of speech-language pathologists who are certified by the American Speech Language Hearing Association can be found on their website. A few short questions posed to the speech-language pathologist can reveal whether they are comfortable with the area of AAC.

Wait Training Synonyms Tolerance for delay  Definition Wait training is synonymous with teaching “tolerance for delay.” For example, some people with ASD may become restless and disruptive when they are told to “wait” after making a request. Or, they may have difficulty waiting for a future activity to occur. It is first necessary to identify the situations and conditions that will be the focus of wait training. Next, a defined wait period is selected, usually a short duration a person can

of wait training. Next, a defined wait period is selected, usually a short duration a person can comfortably tolerate and then increased gradually over time. In illustration, a child or adult may be unable to wait before eating at a favorite restaurant. Wait training in this setting would begin by informing the person that she/he will have to “wait to be called” to the table. Training can be supplemented with visual cues such as a small card showing a red circle (“wait”) on one side and a green

with visual cues such as a small card showing a red circle (“wait”) on one side and a green circle (“go”) on the other side. When displaying the red side of the card, a parent or care provider would praise the person for “waiting” or possibly allow her/him access to preferred objects such as a music source (iPod) or book throughout the wait period. When it is time to be seated in the restaurant, the person would be shown the green side of the card, praised again, and allowed to go to the table.

person would be shown the green side of the card, praised again, and allowed to go to the table. This final step of wait training, gaining access to the highly preferred activity, is intended to reinforce the preceding sequence of behaviors, namely, entering the restaurant, sitting quietly, and remaining occupied until the meal begins. With routine training, visual cues and social reinforcement eventually can be withdrawn so that an initial “wait” instruction is sufficient. Of note, training

eventually can be withdrawn so that an initial “wait” instruction is sufficient. Of note, training someone to wait in one setting or under certain conditions may not extend to other settings and conditions unless similar training is implemented there.

Weak Central Coherence Definition The term “central coherence” refers to the “neurotypical” (NT, i.e., non-autistic) tendency to pull information together and process information in context, looking for the “big picture” and drawing out meaning, often at the expense of details. By contrast, “weak central coherence” refers to the tendency in ASD to attend to and remember details rather than global form or meaning.

Historical Background The term “central coherence” was coined by Uta Frith in her influential 1989 book “Autism: Explaining the Enigma.” This drive for coherence, in Frith’s words, “pulls together large amounts of information” like the tributaries of a river, and “without this type of high-level cohesion, pieces of information would just remain pieces, be they small pieces or large pieces” (p. 97). She hypothesized that the drive for coherence was weaker in people with ASD and suggested that

97). She hypothesized that the drive for coherence was weaker in people with ASD and suggested that this would make them better than neurotypicals (NTs) at some tasks. Together with Amita Shah, she demonstrated that people with ASD were better than IQ-matched comparison groups on the Block Design and Embedded Figures Tests, demonstrating facility in seeing the parts without being distracted by the whole picture.

The concept of weak coherence is reflected in Kanner’s first reports of autism as involving an “inability to experience wholes without full attention to the constituent parts. . . A situation, a performance, a sentence is not regarded as complete if it is not made up of exactly the same elements that were present at the time the child was first confronted with it. If the slightest ingredient is altered or removed, the total situation is no longer the same and therefore is not accepted as such”

or removed, the total situation is no longer the same and therefore is not accepted as such” (Kanner 1943, p. 246). Kanner’s interest in global–local processing in ASD, and its relationship with insistence on sameness, is reflected in the title of his 1951 paper, “The conception of wholes and parts in early infantile autism.”

Current Knowledge The notion that people with ASD have a more detail-focused processing style than NTs has become popular not only with researchers but also with teachers, parents, and those with ASD. A recent poster by the National Autistic Society in the UK showed a close-up of an eye, with the words, “When a person with autism walks into a room, the first thing they see is: A pillow with a coffee stain shaped like Africa, a train ticket sticking out of a magazine, 25 floorboards, a remote

stain shaped like Africa, a train ticket sticking out of a magazine, 25 floorboards, a remote control, a paperclip on the mantelpiece, a marble under the chair, a crack in the ceiling, 12 grapes in a bowl, a piece of gum, a book of stamps. . . so it’s not surprising they ignore you completely.” The idea of weak coherence fits with descriptions by individuals with ASD of their own experience: for example, Gunilla Gerland (1997) writes, “Every little bit of fact seemed to land in its own

for example, Gunilla Gerland (1997) writes, “Every little bit of fact seemed to land in its own compartment in my head and refused to be linked with any other.” The emphasis on understanding strengths, as well as weaknesses, in ASD has been particularly welcomed and has led to “weak” coherence often being referred to instead as “detail-focused” processing.

Studies to date suggest that weak coherence is a cognitive style, not deficit, and may be best conceptualized as an information-processing bias towards local or featural information (Booth and Happé 2010). This bias can be overcome, just as NTs can overcome their preference for meaning to memorize “meaningless” information such as telephone numbers or bank codes. So, for example, people with ASC can read text for meaning, but unless asked to do so explicitly, their default approach may be to

can read text for meaning, but unless asked to do so explicitly, their default approach may be to read a story as if it were just a list of words (e.g. not using context to disambiguate homographs; Happé 1997). A natural eye for detail appears to play a part in the unusually high rate of savant skills in ASC (Happé and Vital 2009), facilitating, for example, absolute pitch as a basis for further musical skills. Even the child with ASC who is terribly distressed by a familiar ornament being

musical skills. Even the child with ASC who is terribly distressed by a familiar ornament being moved a fraction of an inch is demonstrating a special skill and attention to detail that few NTs possess.

Whether the good eye and memory for detail in ASD comes at the expense of processing the meaning and bigger picture is a topic of much debate. Several alternative accounts of superior local processing in ASC (including Baron-Cohen’s “hyper-systemizing” and Mottron’s “enhanced perceptual functioning” theories) propose that global processing is intact in ASD (Mottron et al. 2006). Recently, Happé and Booth (2008) have suggested that weak coherence may be the result of two somewhat independent

and Booth (2008) have suggested that weak coherence may be the result of two somewhat independent aspects, superior featural processing and poor global processing, with different subgroups within ASD showing only the former, only the latter, or both, of these.

Studies to date suggest that detail-focused processing bias is not secondary to so-called executive dysfunction: impulsivity and poor planning in ADHD, for example, do not result in the characteristic assets or deficits associated with weak coherence in ASD (Booth et al. 2003). The relationship between weak coherence and “Theory of Mind” deficits is less clear, although a degree of independence seems likely as, for example, some fathers of children with ASD show excellent eye for detail

seems likely as, for example, some fathers of children with ASD show excellent eye for detail without accompanying social difficulties (Happé et al. 2001). Weak coherence may also be relevant to other special groups; for example, recent work suggests superior eye for detail in some women with eating disorders (Lopez et al. 2008). To date, the brain basis of weak coherence is unclear, although the theory chimes well with suggestions of reduced functional connectivity, stronger local than

the theory chimes well with suggestions of reduced functional connectivity, stronger local than long-range neural connections, and reduced top-down modulation (e.g., Belmonte et al. 2004). The working hypothesis is that weak coherence is among the features of the “broader autism phenotype,” inherited in many cases of ASC. Importantly, ongoing work suggests an overlap between genetic influences on ASC-like eye for detail and genetic influences on talent in maths, music, art, or memory (Happé and

ASC-like eye for detail and genetic influences on talent in maths, music, art, or memory (Happé and Vital 2009).

Future Directions At least three areas are likely to be important in future research on weak central coherence. First, functional brain imaging studies are needed to better understand the neural basis of this cognitive style, in ASD and in the general population. Second, research on the link between detail-focused style and talent might inform educational approaches to encourage talent development in individuals with ASD and those without. Finally, an important aim for future research is to

in individuals with ASD and those without. Finally, an important aim for future research is to develop educational interventions based on the weak coherence hypothesis, helping children with ASD learn to see the bigger picture where needed while also capitalizing on their natural strength in noticing and remembering details.

Wechsler Memory Scale (All Versions) Description The Wechsler Memory Scale (WMS) is a neurocognitive assessment tool designed for individuals aged 16–90 years old. Since memory functioning cannot be measured directly, it must be assessed via other cognitive skills, like verbal ability (Holdnack et al. 2011). The WMS measures different facets of human memory, including visual memory, auditory memory, and working memory.

Historical Background Introduced in 1945, the original WMS has undergone several major revisions, including Russell’s WMS-Revised (1975, 1988), the WMS-R (1987), WMS-III (1997), and the WMS-III Abbreviated (2002). Each of these revisions built upon the previous version and reflected evolving theories about memory. Published in 2009, the WMS-IV is the most current version and is designed to complement the Wechsler Adult Intelligence Scale (WAIS-IV); this is very helpful in cases where the goal

the Wechsler Adult Intelligence Scale (WAIS-IV); this is very helpful in cases where the goal of testing is to compare an individual’s memory functions with his/her other cognitive abilities. The validation sample of the WMS-IV consisted of 100 participants per age band, for a total sample of 1400; the co-validation WAIS-IV/WMS-IV sample consisted of 900 individuals (Holdnack et al. 2011). These samples were stratified nationally by sex, education level, ethnicity, and region. The WMS-IV is

samples were stratified nationally by sex, education level, ethnicity, and region. The WMS-IV is innovative in that it also includes an Older Adult Battery, a modified version of the WMS-IV specifically for examinees between the ages of 65 and 90 years old. The goals put forth by the publisher in designing the WMS-IV include: improving clinical sensitivity, decreasing testing time for older adults, improving forensic utility, reducing confounding factors, eliminating repetition or overlap with

improving forensic utility, reducing confounding factors, eliminating repetition or overlap with the WAIS, improving assessment of working memory, and improving ease of scoring and administration.

Psychometric Data The WMS-IV consists of seven subtests, four of which are new to this edition and three that are adapted from the WMS-III. The subtests have generally high internal consistencies, ranging from 0.97 to 0.74, and are even higher among some clinical populations, such as individuals with Alzheimer’s disease. The subtests are generally presented in the following order:

General Cognitive Screener The Brief Cognitive Status Exam (BCSE) is a screener for significant cognitive impairment, which if present, could significantly impact test performance. The BCSE contains items that assess orientation to time, incidental recall, mental control, planning/visual perceptual processing, inhibitory control, and verbal productivity. Performance on this subtest is classified as Average, Low, Moderately Low, and Very Low. The BCSE was introduced in the WMS-IV, replacing the

as Average, Low, Moderately Low, and Very Low. The BCSE was introduced in the WMS-IV, replacing the former Mental Control, and Information and Orientation subtests. Of the seven subtests of the WMS-IV, this is the only one that is considered to be optional.

Logical Memory In Logical Memory I, the examinee is presented with information orally, in a story format, and is immediately asked to recall as many specific details about the story as possible. The general WMS-IV contains two stories; the Older Adult Battery contains only one story that is presented twice. In Logical Memory II, the examinee is asked to recall specific details about the information following a 20–30 min delay, and also to answer some yes or no questions about it. Thus, Part I

following a 20–30 min delay, and also to answer some yes or no questions about it. Thus, Part I measures auditory immediate memory whereas Part II measures auditory delayed memory and auditory delayed recognition. Logical Memory was included in previous versions of the WMS and was modified slightly for the WMS-IV. These changes include eliminating a repetition of a story in the general battery, making small factual changes within a story to address clinician feedback, and including a new story

small factual changes within a story to address clinician feedback, and including a new story in the Older Adult Battery. Logical Memory I has an internal reliability of 0.82 (0.86 for the Older Adult Battery) and Logical Memory II has an internal reliability of 0.85 (0.87 for the Older Adult Battery). The test-retest reliability of Logical Memory I is 0.72 (0.77 for the Older Adult Battery) and of Logical Memory II is 0.67 (0.71 for the Older Adult Battery).

Verbal Paired Associates In Verbal Paired Associates I, the examinee is presented with a series of word pairs and is immediately asked to recall them, following a prompt including the first word of the pair. In Verbal Paired Associates II, the examinee is asked to recall these word pairs following a 20–30 min delay (again, following a prompt including the first word of the pair) and also to identify which pairs were presented earlier, from a list of words pairs. Part I of Verbal Paired

to identify which pairs were presented earlier, from a list of words pairs. Part I of Verbal Paired Associates measures immediate learning of verbal associations and Part II measures delayed cued recall for these verbal associations, as well as long-term auditory recall. The California Verbal Learning Test – Second Edition (CVLT-II) is another measure that requires verbal list-learning and measures auditory verbal memory, and it is similar enough to the Verbal Paired Associates subtest that it

auditory verbal memory, and it is similar enough to the Verbal Paired Associates subtest that it is identified as an acceptable alternative to the WMS-IV. The CVLT-II can be used as a substitute for Verbal Paired Associates if an examinee has particular difficulty with words pairs that are not semantically related. Verbal Paired Associates was included in previous versions of the WMS and was modified significantly for the WMS-IV. These changes include the addition of easier items to increase

significantly for the WMS-IV. These changes include the addition of easier items to increase the range of scores, and the addition of Word Recall, an optional free recall condition that requires the examinee to recall, without cues, as many of the original word pairs as possible. Verbal Paired Associates I has an internal reliability of 0.94 (0.93 for the Older Adult Battery) and Verbal Paired Associates II has an internal reliability of 0.85 (0.74 for the Older Adult Battery). The test-retest

II has an internal reliability of 0.85 (0.74 for the Older Adult Battery). The test-retest reliability of Verbal Paired Associates I is 0.76 (also 0.76 for the Older Adult Battery) and of Verbal Paired Associates II is 0.76 (0.77 for the Older Adult Battery).

Designs In Designs I, the examinee is presented with a series of grids that contain black and white geometric designs for 10 s. Next, the examinee is presented with grids containing new designs, and is asked to identify the locations of the previous designs within them. In Designs II, the examinee is presented with a series of grids and is asked to identify the locations of the original designs following a 20–30 min delay; additionally, the examinee is asked, in a multiple-choice format, to

following a 20–30 min delay; additionally, the examinee is asked, in a multiple-choice format, to indicate which grids have the correct original designs and locations following a delay. This subtest differentiates one’s capacity for visual details and spatial recall and was introduced in the WMS-IV, replacing the former Family Pictures and Faces subtests. The internal reliability of both Designs I and Designs II is 0.85; its test-retest reliability of Designs I is 0.73 of Designs II is 0.72.

I and Designs II is 0.85; its test-retest reliability of Designs I is 0.73 of Designs II is 0.72. Designs is excluded from the Older Adult Battery.

Visual Reproduction In Visual Reproduction I, the examinee is shown a series of five designs for 10 s each. Then, the picture is removed and the examinee is asked immediately to draw it from memory. In Visual Reproduction II, the examinee must draw the same target designs following a 20–30 min delay, without any cues. Also, the examinee must identify the target designs in a multiple-choice format following a delay. An optional condition requires the examinee to copy the original designs while

following a delay. An optional condition requires the examinee to copy the original designs while the target design is displayed; this serves as a control for the examinee’s visuospatial skills. Overall, the Visual Reproduction subtest measures short- and long-term visual memory and long-term visual recall. It was included in previous versions of the WMS and was modified significantly for the WMS-IV. These changes include quicker and easier scoring rules for examiners, a return to a 7-item

WMS-IV. These changes include quicker and easier scoring rules for examiners, a return to a 7-item visual discrimination format, and the copy condition, described above. Visual Reproduction I has an internal reliability of 0.93 (also 0.93 for the Older Adult Battery) and Visual Reproduction II has an internal reliability of 0.97 (0.96 for the Older Adult Battery). The test-retest reliability of Visual Reproduction I is 0.62 (0.79 for the Older Adult Battery) and of Visual Reproduction II is

Visual Reproduction I is 0.62 (0.79 for the Older Adult Battery) and of Visual Reproduction II is 0.59 (0.64 for the Older Adult Battery).

Spatial Addition In Spatial Addition, the examinee is shown a grid with a pattern of blue and/or red dots, which is immediately followed with a second grid with blue and/or red dots. In these trials, the blue dots are the target and the red dots are the distractor. The examinee then is given another grid, along with white cards and cards with blue dots, and is asked to perform addition, based on rules presented through the previous two grids, to show where the dots should appear on the new

on rules presented through the previous two grids, to show where the dots should appear on the new grid. This subtest measures spatial working memory and requires the storage and manipulation of visual information, as well as the ability to ignore competing stimuli. Spatial Addition was introduced in the WMS-IV, replacing the former Spatial Span subtest. The internal reliability of Spatial Addition is 0.91; its test-retest reliability is 0.74. Spatial Addition is excluded from the Older Adult

is 0.91; its test-retest reliability is 0.74. Spatial Addition is excluded from the Older Adult Battery.

Symbol Span In Symbol Span, the examinee is presented with novel symbols in a specific order and is then asked to identify them, in that order, on a page with many different symbols. This subtest measures visual-sequencing working memory, or the capacity to retain a mental image of a symbol and its relative spatial position. Symbol Span was introduced in the WMS-IV as a visual complement to the WAIS-IV subtest Digit Span. The internal reliability of Symbol Span is 0.88 (0.84 for the Older

the WAIS-IV subtest Digit Span. The internal reliability of Symbol Span is 0.88 (0.84 for the Older Adult Battery) and its test-retest reliability is 0.72 (0.69 for the Older Adult Battery).

Older Adult Battery The Older Adult Battery is a modified version of the WMS-IV that is specifically for examinees between the ages of 65 and 90. It does not contain the Designs and Spatial Addition subtests and requires only half the time as the complete WMS-IV (45 min, as opposed to 75–90 min). Because the Spatial Addition subtest is not administered, a Working Memory Index Score is not calculated for the Older Adult Battery.

Calculation of Index Scores Subtest raw scores are converted into scaled scores that have a mean of 10 and a standard deviation of 3. Subtests contribute to five indices: Immediate Memory Index (Logical Memory I, Designs I, Visual Reproduction I, and Verbal Paired Associates I), Delayed Memory Index (Logical Memory II, Designs II, Visual Reproduction II, and Verbal Paired Associates II), Visual Working Memory Index (Spatial Addition and Symbol Span), Auditory Memory Index (Logical Memory I and

Memory Index (Spatial Addition and Symbol Span), Auditory Memory Index (Logical Memory I and II, and Verbal Paired Associates I and II), and Visual Memory Index (Designs I and II, and Visual Reproduction I and II). Standard scores are derived for each of these five indices, with a mean of 100 and a standard deviation of 15.

Index scores are the basis for interpreting WMS-IV performance as they are more psychometrically sound than individual subtest scores. The internal reliabilities of the indices are very high, ranging from 0.93 (Visual Working Memory Index) to 0.98 (Visual Memory Index) for the 16–90 battery, and from 0.92 (Delayed Memory Index) to 0.97 (Visual Memory Index) for the Older Adult Battery. The test-retest reliability of the indices is good, ranging from 0.79 (Delayed Memory Index) to 0.82 (Visual

reliability of the indices is good, ranging from 0.79 (Delayed Memory Index) to 0.82 (Visual Working Memory Index) for the 16–90 battery, and from 0.79 (Visual Memory Index) to 0.84 (Immediate Memory Index) for the Older Adult Battery. The Immediate Memory Index indicates one’s capacity to encode and retrieve both verbal and visual information very shortly after its presentation; the Delayed Memory Index indicates one’s capacity to perform the same functions but after a longer period of time.

Index indicates one’s capacity to perform the same functions but after a longer period of time. The Visual Working Memory Index captures one’s ability to work with information that is presented visually, including retaining, organizing, and manipulating it. The Auditory Memory Index indicates one’s capacity for encoding and retrieving information that is presented verbally, both immediately and following a delay, and the Visual Memory Index measures the same abilities, except for information

following a delay, and the Visual Memory Index measures the same abilities, except for information that is visual in nature. Index-level contrast scaled scores are calculated to determine whether differences between index scores for a given examinee are statistically significant or within the expected ranges of variation.

Clinical Uses There are a number of factors that can negatively impact one’s performance on the WMS subtests, including disabilities (visual, auditory, physical, speech, and language), lack of familiarity with the testing format, and limited English proficiency. The balance of verbal and nonverbal tests helps to account for these factors. Also, conditions such as Alzheimer’s disease, schizophrenia, traumatic brain injury, and intellectual disability have been associated with lower scores on

traumatic brain injury, and intellectual disability have been associated with lower scores on the WMS. There are also factors that can falsely inflate one’s performance. Memory and learning measures are subject to significant practice effects, in which one’s performance increases with increased exposure to the testing materials. On the WMS-IV, these increases may approach one standard deviation. Therefore, retesting within a short time period (for example, 1–3 months) can lead to invalid

Therefore, retesting within a short time period (for example, 1–3 months) can lead to invalid results.

As the WMS-IV is a relatively new instrument, little research has documented how individuals with ASD perform on it. Twenty-two individuals with autism were included in the official validation sample of the WMS-IV and preliminary studies suggested that they, along with adults with schizophrenia and traumatic brain injury, performed in the Low Average range on Designs I and II. Additionally, participants with autism performed significantly worse on the Spatial Addition and Symbol Span subtests

with autism performed significantly worse on the Spatial Addition and Symbol Span subtests than those without autism. It is important to keep in mind that these results are based on a very small sample and that additional research is needed to understand how individuals with ASD may perform on the new WMS-IV subtests.

Previous research compared the performance of individuals with ASD and that of individuals without ASD on the WMS-III. While people with and without ASD performed comparably on memory for words pairs, stories, and a verbal working memory task, individuals with ASD performed worse on immediate and delayed recall of faces and family scenes – which are not included in the WMS-IV – and on a test of spatial working memory (Williams et al. 2005). Other research has examined memory function in

of spatial working memory (Williams et al. 2005). Other research has examined memory function in adolescents and young adults with ASD with measures other than the WMS. For example, Minshew and Goldstein (2001) found that individuals with ASD performed worse than those without ASD on some tasks comparable to those included in the WMS, including a list-learning task, and an immediate and delayed story recall, and that these results may have been due to weaknesses in higher-level mental

delayed story recall, and that these results may have been due to weaknesses in higher-level mental organization and a failure to attend to contextual or semantic clues.

Wechsler Preschool and Primary Scale of Intelligence Synonyms Psychological Assessment; WPPSI-III; WPPSI-III – Wechsler Preschool and Primary Scale of Intelligence, Third Edition

Abbreviations | FSIQ  | Full scale IQ                | |-------|------------------------------| | GLC   | General language composite   | | IQ    | Intellectual quotient        | | PIQ   | Performance IQ               | | PSQ   | Processing speed quotient    | | VIQ   | Verbal IQ                    |  Description The Wechsler Preschool and Primary Scale of Intelligence – Third Edition (WPPSI-III) is an individually administered clinical instrument for assessing the intelligence of children aged

is an individually administered clinical instrument for assessing the intelligence of children aged 2 years 6 months through 7 years 3 months (2:6–7:3). Its age range is divided into two age bands (2:6–3:11 and 4:0–7:3) each with its own battery of subtests. The WPPSI-III provides composite scores that represent intellectual functioning in specified cognitive domains such as Verbal IQ and Performance IQ. The verbal areas are considered auditory/vocal tasks (auditory input and vocal output), and

IQ. The verbal areas are considered auditory/vocal tasks (auditory input and vocal output), and the performance areas are considered visual/vocal (visual input and vocal output) and visual/motor tasks (visual input and motoric output). The WPPSI-III also provides a composite score that represents a child’s general intellectual ability (Full Scale IQ). All standard scores have a mean of 100 and a standard deviation of 15. All subtests yield a scaled score with a mean of 10 and a standard

and a standard deviation of 15. All subtests yield a scaled score with a mean of 10 and a standard deviation of 3. Administration time is between 60 and 75 min in an individual format. Testing materials can be obtained through the publishing company (Pearson) to a qualified examiner. Computerized scoring and interpretation is available.

Structure There are three types of subtests: core, supplemental, and optional.  Core Completion of the core subtests yields Full Scale IQ (FSIQ), Verbal IQ (VIQ), and Performance IQ (PIQ). Composite scores can be judged in relation to norms and can guide clinical judgment.

Ages 2:6–3:11 *   Receptive Vocabulary *   Information *   Block Design *   Object Assembly Full Scale IQ ¼ Verbal Domains, Performance Domains Verbal ¼ Receptive Vocabulary and Information Performance ¼ Block Design and Object Assembly  Ages 4:0–7:3 *   Information *   Vocabulary *   Word Reasoning *   Block Design *   Matrix Reasoning *   Picture Concepts *   Coding Full Scale IQ ¼ Verbal Domains, Performance Domains, and Coding Subtest Verbal ¼ Information, Vocabulary, Word Reasoning

Domains, Performance Domains, and Coding Subtest Verbal ¼ Information, Vocabulary, Word Reasoning Performance ¼ Block Design, Matrix Reasoning, Picture Concepts Coding Subtest  Supplemental These subtests can be used to substitute for core subtests and derive additional composite scores. Processing Speed Quotient (PSQ) for ages 4:0–7:3. General Language Composite (GLC) for ages 2:6–3:11.

Ages 2:6–3:11 *   Picture Naming General Language Composite (GLC) ¼ Picture Naming and Receptive Vocabulary (from Core subtests)

Ages 4:0–7:3 *   Symbol Search *   Comprehension *   Picture Completion *   Similarities *   Object Assembly Processing Speed Quotient (PSQ) ¼ Coding (from Core subtests) and Symbol Search  Optional These subtests are not used to substitute for any core subtest.  Ages 4:0–7:3 *   Receptive Vocabulary *   Picture Naming General Language Composite (GLC) ¼ Receptive Vocabulary and Picture Naming  Some subtests can be core, supplemental, or optional depending on the age of the child (e.g.,

Some subtests can be core, supplemental, or optional depending on the age of the child (e.g., Receptive Vocabulary subtest is a core verbal subtest for ages 2:6–3:11 but is optional for ages 4:0–7:3). Supplemental Verbal subtests are Comprehension and Similarities. Either of these subtests may be substituted for one core Verbal subtests. Supplemental Performance Subtests are Picture Completion and Object Assembly. Either of these subtests may be substituted for one core Performance subtest.

and Object Assembly. Either of these subtests may be substituted for one core Performance subtest. Symbol Search is a supplemental Processing Speed subtest and can be used to either substitute for the core Processing Speed subtest (Coding) or added to the Coding to then derive the Processing Speed Quotient (PSQ). Optional subtests may be used to provide measure of expressive and receptive vocabulary ability in older children with language delays but may not be substituted for core Verbal

ability in older children with language delays but may not be substituted for core Verbal subtests. Further, Receptive Vocabulary and Picture Naming allow the practitioner to calculate the General Language Composite.

Description of Subtests Information. (2:6–7:3 Core, Verbal, 34 items including 6 picture and 28 verbal). This subtest is designed to assess a child’s ability to acquire, retain, and retrieve general factual knowledge. This knowledge is referred to as a general fund of knowledge that includes crystallized intelligence, long-term memory, and the ability to retain and retrieve knowledge from school and the environment. General information is acquired from experience and education, remote verbal

and the environment. General information is acquired from experience and education, remote verbal memory, understanding, and associative thinking. Other skills that could contribute include auditory perception and comprehension and verbal expressive ability. The picture (n ¼ 6) items do not require a verbal response and were designed for the youngest children. They require the child to respond to a question by choosing a picture from a field of four commonplace objects. Verbal items require a

a question by choosing a picture from a field of four commonplace objects. Verbal items require a brief verbal response from each child.

Vocabulary. (4:0–7:3 Core, Verbal, 25 items including 5 picture 20 verbal). This subtest is designed to assess a child’s understanding of spoken words, learning ability, general range of ideas, verbal information acquired from experience and education, and kind and quality of expressive language. Focus is on child’s word knowledge and verbal concept formation that includes a child’s fund of knowledge, learning ability, long-term memory, and degree of language development. Other abilities that

learning ability, long-term memory, and degree of language development. Other abilities that could contribute include auditory perception and comprehension, verbal conceptualization, abstract thinking, and verbal expression. For the picture items, the child names the pictures that are displayed in a stimulus book (one per page). For the verbal items, the child gives definitions for words that the examiner reads aloud.

Word Reasoning. (4:0–7:3 Core, Verbal, 28 items). This subtest is designed to measure reasoning with verbal material and includes successive clues for the child to identify the underlying concept. The clues are in a series and are increasingly specific. This task assesses verbal comprehension, analogic and general reasoning ability, ability to integrate and synthesize different types of information, verbal abstraction, and domain knowledge, and the ability to generate alternative concepts.

Comprehension. (4:0–7:3 Supplemental, Verbal, 20 items). This subtest measures social judgment and maturity, common sense, verbal reasoning based upon experience, practical intelligence/knowledge of conventional standards of behavior, and conceptualization. This subtest measures the ability to evaluate and utilize past experience, verbal comprehension and expression, and the ability to demonstrate practical information. All items require the child to answer questions based on the understanding

practical information. All items require the child to answer questions based on the understanding of general principals and social situations.

Similarities. (4:0–7:3 Supplemental, Verbal, 24 items). This subtest measures abstract and concrete verbal reasoning, concept formation, logical thought processes, associative thinking, and remote memory. It involves auditory comprehension, memory, the ability to distinguish between nonessential and essential features, and verbal expression. The subtest questions involve sentence completion with a response that reflects a shared characteristic. The child is read an incomplete sentence that

a response that reflects a shared characteristic. The child is read an incomplete sentence that contains two concepts sharing a common characteristic.

Receptive Vocabulary. (2:6–3:11 Core, Verbal/4:0–7:3 Optional, Verbal, 38 items). This subtest measures a child’s understanding of spoken words, understanding of verbal directives, auditory and visual discrimination, auditory memory and processing, learning ability, general range of ideas, ability to integrate visual perception and auditory input, verbal information acquired from experience and education, and kind and quality of expressive language. Responses may be influenced by phonological

education, and kind and quality of expressive language. Responses may be influenced by phonological memory and working memory. This subtest is relatively unaffected by emotional disturbance but is highly susceptible to cultural background and level of education. It is the best single measure of intelligence in the entire battery. The child looks at a group of four pictures and points to the one the examiner names aloud.

Picture Naming. (2:6–3:11 Supplemental, Verbal/4:0–7:3 Optional Verbal, 30 items). This subtest measures expressive language ability, word retrieval from long-term memory, and association of visual stimuli with language. The child names a picture that is displayed in the stimulus book.

Block Design. (2:6–7:3 Core, Performance, 20 items). This subtest measures the ability to perceive, analyze, synthesize, and reproduce abstract visual stimuli. It involves nonverbal concept formation, visual perception and organization, simultaneous processing, visual-motor coordination, learning, spatial relationships, and the ability to separate figure and ground in visual stimuli as well as the ability to plan and organize. For younger children, skills involve visual observation and

as the ability to plan and organize. For younger children, skills involve visual observation and matching ability as well as the ability to integrate visual and motor processes. Children are required to recreate a design created in the child’s view within a specified time limit. This subtest is divided into two parts (A and B). Part A (items 1–10) involves one-color blocks and rotation is not penalized. Items 1–6 have two trials. Thus, it was designed for the youngest children. Part B (items

Items 1–6 have two trials. Thus, it was designed for the youngest children. Part B (items 11–20) involves viewing and constructing a model or picture in a stimulus book, the use of one- or two-color blocks, and rotations of 30° or more are penalized.

Matrix Reasoning. (4:0–7:3 Core, Performance, 29 items). This highly reliable estimate of general intellectual ability measures fluid reasoning. Matrix reasoning tasks are relatively culture-fair and language-free requiring no hand manipulation. This reliable measure of visual information processing and abstract reasoning skills utilizes four types of matrices. The first is continuous and discrete pattern completion, classification, analogic reasoning, and serial reasoning. The child looks at

pattern completion, classification, analogic reasoning, and serial reasoning. The child looks at an incomplete matrix/grid and selects the missing piece to properly complete the matrix from 4 to 5 response options.

Picture Concepts. (4:0–7:3 Core, Performance, 28 items). This subtest measures fluid reasoning, perceptual organization, and abstract categorical reasoning without a verbal response. Items are developmentally sequenced to reflect increasing demands on abstract reasoning abilities. Easier questions are more concrete (e.g., color, shape, appearance), and the more difficult items require responses based upon more abstract representations (e.g., functions of an object). From each of two or three

based upon more abstract representations (e.g., functions of an object). From each of two or three rows of object, the child selects objects that form a group with a common characteristic based upon an underlying concept.

Picture Completion. (4:0–7:3 Supplemental, Performance, 32 items). This subtest is designed to measure visual alertness to surroundings, remote visual memory, visual perception and organization, concentration, visual attention to detail, and ability to isolate essential from nonessential detail. All items require the child to view a picture and point to or name the important part missing from the picture.

Object Assembly. (2:6–3:11 Core, Performance/4:0–7:3 Supplemental, Performance, 14 items). This subtest measures immediate perception of a total configuration, integration and synthesis of part-whole relationships, nonverbal reasoning, and trial and error learning, spatial ability, visual-motor-spatial coordination, cognitive flexibility, and persistence. The child is presented with a standardized configuration of puzzle pieces and allowed 90 s to fit the pieces together to form a meaningful

configuration of puzzle pieces and allowed 90 s to fit the pieces together to form a meaningful whole.

Symbol Search. (7:0–7:3 Supplemental, Processing Speed, 120 s). This subtest assesses visual discrimination, short-term visual memory, visual motor coordination, cognitive flexibility, and concentration. It also may involve auditory comprehension, perceptual organization, and planning and learning ability. The child scans a search group and indicates whether a target symbol appears in the search group by marking the appropriate symbol with a pencil.

Coding. (4:0–7:3 Core, Processing Speed, 120 s). This subtest measures ability to associate meaning with symbols, visual-motor coordination and dexterity (pencil manipulation), flexibility and speed in learning tasks, short-term memory, visual perception, visual scanning ability, cognitive flexibility, attention, and motivation. It also may involve visual and sequential processing. The child copies symbols that are paired with simple geometric shapes. Using a key, the child draws each symbol

symbols that are paired with simple geometric shapes. Using a key, the child draws each symbol in its corresponding shape.

Historical Background In the early twentieth century, prevalent theories of intelligence emphasized a single, underling construct of intelligence as largely responsible for an individual’s performance on all mental tasks. The definition of intelligence, or cognitive ability, evolved as professionals developed ways to measure it. Indeed, experts have agreed that there are overwhelmingly three elements that make up the most important aspects of cognitive ability. They are the ability to deal

elements that make up the most important aspects of cognitive ability. They are the ability to deal with abstractions (ideas, symbols, relationships, concepts, and principles), the ability to solve problems (to deal with new situations, not simply to make well-practiced responses to familiar situations), and the ability to learn (the ability to grasp and use abstractions of the kind involving words and other symbols). Psychologists such as Spearman (1904) and Cattell (1941, 1957) introduced the

and other symbols). Psychologists such as Spearman (1904) and Cattell (1941, 1957) introduced the theory that intelligence was comprised of two general factors. The first is fluid intelligence or generalized intelligence which is defined as the ability to perceive relationships independent of previous specific practice or instruction regarding these relationships. It is the ability to manipulate and think abstractly and solve problems. It is considered independent of learning. The second is

and think abstractly and solve problems. It is considered independent of learning. The second is crystallized intelligence which involves learning from contexts and materials previously learned (e.g., reading comprehension, vocabulary exams). This intelligence is based upon facts and rooted in experiences. It grows as people age and accumulate new knowledge and understanding.

Tests to measure intelligence, or cognitive ability, were developed in the latter half of the nineteenth century and reflected the social milieu in which they occurred. The majority of tests were developed for school-aged children, while the assessment of preschool-age children came later and is a relative newcomer in the history of testing. In 1905, Binet and Simon developed tasks to measure the intelligence of children within the Paris public schools in response to the French government

the intelligence of children within the Paris public schools in response to the French government commission aimed at developing methods to identify children who would not benefit from regular education. These tasks were primarily language oriented, emphasizing judgment, memory, comprehension, and reasoning. After two revisions (1908, 1911), the scale extended from age 3 to 13 and included five adult tests. Others revised the assessment again in 1912, 1914, and 1916 and extended the assessment

tests. Others revised the assessment again in 1912, 1914, and 1916 and extended the assessment downward to 2 months of age (although these early tests were methodologically lacking) and to the United States (Terman and his colleagues). The primary focus of intelligence testing continued to be aimed at identifying intellectual deficiencies.

Around the time the US entered into World War I, the focus of intelligence testing began to change. There was a need to use an intelligence measure to screen recruits. The Army Alpha was created and included a large verbal component, and thus the Army Beta was subsequently developed to address the recruits with limited literacy skills to provide a nonverbal measure of intelligence. In 1925, the understanding of “developmental schedules” began to evolve as Gesell identified four areas of

the understanding of “developmental schedules” began to evolve as Gesell identified four areas of development (motor, language, adaptive, and personal social) in 10 age levels (birth, 4, 6, 9, 12, 18, 24, 36, 48, and 60 months). This work helped guide the understanding of early developmental profiles which then were subsequently used in the development of tests for infants and preschoolers. Key infant and preschool assessments of development and cognition were published in the first half of the

and preschool assessments of development and cognition were published in the first half of the twentieth century (Merrill-Palmer Scale of Mental Tests – Stutsman 1931; Minnesota Preschool Scale – Goodenough 1926; the Bayley California First-Year Mental Scale – Bayley 1933; and the Iowa Test for Young Children – Fillmore 1936); however, these assessments focused more on mental and physical growth than on intelligence. Tests for infant preschool intelligence were developed in the 1940s (Cattell

than on intelligence. Tests for infant preschool intelligence were developed in the 1940s (Cattell Infant Intelligence Scale – Cattell 1940; Northwest Infant Intelligence Scale – Gilliland 1949; the Leiter International Performance Scale – Leiter 1948; the Full-Range Picture Vocabulary Test – Ammons and Ammons 1948; and the most widely used Stanford-Binet – 1949). These assessments were primarily designed as psychometric tools.

David Wechsler had strong clinical skills and statistical training with his extensive experience in testing gained initially from the World War I examinations and screenings in which he participated. His developed assessments were first introduced in the mid-1930s and weighted verbal and nonverbal abilities equally which was innovative at that time. As the social culture in the 1950s began to expand to the concept of identifying and diagnosing the nature of learning disabilities in children,

to the concept of identifying and diagnosing the nature of learning disabilities in children, the intelligence tests that focused on measuring more discrete aspects of an individual’s cognitive functioning became very valuable. Wechsler’s goals were to create batteries that yielded dynamic clinical information from his chosen set of tasks.

The original assessment was the Wechsler-Bellevue that was based upon the premise that intelligence is a global entity, characterizing the individual’s behavior as a whole, and it is also specific because it is composed of elements or abilities that are distinct from each other. Thus, he developed subtests that highlighted the cognitive aspects of intelligence: abstract reasoning, perceptual organization, verbal comprehension, quantitative reasoning, memory, and processing speed. Wechsler’s

verbal comprehension, quantitative reasoning, memory, and processing speed. Wechsler’s concept of intelligence was not a two-factor structure of intelligence. Instead, the two areas (verbal and performance) are different measures of intelligence, not measures of different kinds of intelligence. He concluded that the Verbal and Performance subtests were only one of several ways in which the tests could be grouped.

In the 1960s, the US federal government became involved in education (e.g., Head Start), and this involvement warranted the assessment of preschool children. There was a need for effective program evaluation at the preschool level (both concurrent and predictive). In 1967, the Wechsler Preschool and Primary Scale of Intelligence (WPPSI) was developed to meet that need. It was a downward extension of the Wechsler Intelligence Scale for Children, and it had simpler items and an appropriately

of the Wechsler Intelligence Scale for Children, and it had simpler items and an appropriately aged standardization sample; however, the age range was 4 years to 6 ½ years which did not address the need of early start programs. In 1975, again due to federal involvement in education through Public Law 94–142, the Education for All Handicapped Children Act, there was a need to evaluate and diagnose children’s levels of functioning. These laws directly affected the continued development of

children’s levels of functioning. These laws directly affected the continued development of standardized testing, and the WPPSI was revised in 1989 (WPPSI-R) and expanded the age range to include 3 years through 7 years 3 months as well as the addition of both easier and more difficult items to the original subtests. Age determined starting points were introduced to reduce the overall administration time. In 2002, a third revision (WPPSI-III) was published to first update the theoretical

time. In 2002, a third revision (WPPSI-III) was published to first update the theoretical foundations by additional composite scores, enhancing the measure of fluid reasoning and incorporating measures of processing speed. Second, the assessment was revised to increase the developmental appropriateness by dividing the assessment into two age bands: 2 years 6 months to 3 years 11 months and 4 years to 7 years 3 months. Further, the instructions were simplified, the test materials were updated,

to 7 years 3 months. Further, the instructions were simplified, the test materials were updated, time constraints and expressive language confounds were reduced, and items/queries/prompts were added as options. Third, the assessment was designed to enhance the clinical utility by increasing the number of special group studies (gifted, developmental delay, mental retardation, etc.), extending the age range, and updating statistical linkage to measures of achievement. Fourth,

psychometric properties were improved by updating the norms, by adding additional evidence of reliability and validity, by extending the floor and ceiling, and by reexamining bias. Finally, user-friendliness was increased by reducing the testing time, reorganizing the manual and the record form, and simplifying administration procedures. The WPPSI-III addresses the developmental period that involves some of the most profound changes in children’s cognitive abilities.

Psychometric Data  Development and Standardization Procedures  The WPPSI-III development was a 4-year iterative process where each phase of development leads to further refinements of the scale. The AERA 1999 Standards for Educational and Psychological Testing served as primary resources. Test development occurred in five general stages: conceptual development, pilot, national tryout, standardization, and final assembly and evaluation.

Conceptual Development. An advisory panel with nationally recognized experts in school psychology, clinical psychology, neuropsychology, and cognitive development was assembled to work with the team throughout the process. Early in the development, a group of 106 professionals participated in a focus group to refine goals and assist in the formulation of the initial scales. Further, two telephone surveys were conducted with users of the WPPSI-R and professionals in childhood assessment.

surveys were conducted with users of the WPPSI-R and professionals in childhood assessment. Finally, semi-structured surveys of other experts and examiners were conducted at all stages of test development to rate the research versions of the scale on such qualities as developmental appropriateness, user-friendliness, and clinical utility. In all, results were summarized and discussed, and at all stages of development, modifications to the working blueprint and research versions of the scale were

of development, modifications to the working blueprint and research versions of the scale were integrated.

Pilot Stage. The goal of the pilot stage was to produce a version of the scale for use in the next stage (the national tryout stage). The focus was to examine any content issues, relevance of items, adequacy of floors and ceilings, the clarity of instruction, identification of responses processes, administration, scoring, and item bias.

National Tryout Stage. The version used included 17 subtests, and data was obtained from a stratified sample of 424 children representatives of key demographic variables in the national population. Stratification occurred along age, sex, race, parent education level, and geographic region. Further, special group data were collected (e.g., groups of participants with mental retardation, intellectual giftedness, and language disorder as well as oversample of African American and Hispanic children)

giftedness, and language disorder as well as oversample of African American and Hispanic children) to provide additional understanding of the adequacy of the subtests and the clinical utility of the scale.

Standardization Sample. After collecting data from the national tryout stage, a standardization edition of the WPPSI-II was created. All preceding research questions were reexamined using similar research methods, but at this stage, the focus was on the derivation of norms and the provision of reliability, validity, and clinical utility. The WPPSI-III was standardized on a sample of 1700 children aged 2:6–7:3 who were chosen to match closely with the 2000 US census data on the variables of

aged 2:6–7:3 who were chosen to match closely with the 2000 US census data on the variables of gender, geographic region (Northeast, South, Midwest, and West), parent education (0–8 years, 9–11 years, 12 years which was high school degree or equivalent, 13–15 years which was some college or associate’s degree, and 16 or more), and ethnicity (Whites, African Americans, Hispanics, Asians, and other). The sample was divided into nine age-groups of 200 each (2:6–2:11, 3:0–3:5, 3:6–3:11, 4:0–4:5,

The sample was divided into nine age-groups of 200 each (2:6–2:11, 3:0–3:5, 3:6–3:11, 4:0–4:5, 4:6–4:11, 5:0–5:5, 5:6–5:11, 6:0–6:11) and 7:0–7:3 which included 100 participants. The group was evenly split in gender. Trained recruiters and independent examiners identified the children meeting the specified inclusion criteria for the standardization sample. Both the child and parents were paid an incentiv_e_ fee for participation. Subjects were excluded if they were tested on any intelligence

incentiv_e_ fee for participation. Subjects were excluded if they were tested on any intelligence measure in the previous 6 months, had uncorrected visual and/or hearing loss, were not English speaking, had an upper extremity disability that would affect motor performance, were admitted to a hospital or psychiatric facility, were taking medications that might depress test performance, or had a previously diagnosed physical condition or illness that might depress test performance.

Final Assembly. The consistency of the item sets, instructions, and stimulus material was evaluated throughout the development process and retained, modified, or deleted. Further, a special study was conducted to examine the possible effects of a new testing order using a within-subjects design. Sixty children aged 4:0–7:3 were administered 14 subtests in the proposed order for the final scale and matched to 60 children from the standardization sample, and no significant differences were found.

matched to 60 children from the standardization sample, and no significant differences were found. To establish a quality assurance procedure, qualified examiners were found, a computer program automatically checked the values entered by scorers, and scoring studies were conducted to determine the underlying response process.

Statistical Properties  Reliability. Reliability refers to the accuracy, consistency, and stability of test scores across situations. True scores are hypothetical and defined as what an examinee would score if the test were perfectly reliable. The difference between a true score and an examinee’s obtained score is measurement error. A reliable test would thus have very small measurement error as it would be consistent within one administration and on different occasions.

Internal Consistency. The evidence for internal consistency was obtained using the normative sample and the split-half method which was used in the WPPSI-R and divides subtest items with an odd-even split to form two half-tests. The reliability coefficient of the subtest is the correlation between the total scores of the two half-tests corrected by the Spearman-Brown formula for the full subtest. Coding and Symbol Search are timed subtests, and thus test-retest stability coefficients were used

Coding and Symbol Search are timed subtests, and thus test-retest stability coefficients were used as reliability estimates. For the overall standardization sample, the average reliability coefficients range from .84 to .95 which are excellent ( .90) to good. The average internal consistency coefficients for Verbal IQ = .95, Performance IQ = .93, Processing Speed Quotient = .89, General Language Composite = .93, and Full Scale IQ = .96.

Test-Retest Stability. The test-retest stability for the WPPSI-III was obtained on a sample of 157 children (13–27 children from each of the nine age-groups). The WPPSI III was administered a second time to establish stabiity to a group of children at an interval of a mean of 26 days (range 14–50 days). The sample was stratified (39.5% female, 66.2% White, 12.1% African American, 17.2% Hispanic, and 4.5% other). Average test-retest coefficients for the following were: Verbal IQ = .91,

Hispanic, and 4.5% other). Average test-retest coefficients for the following were: Verbal IQ = .91, Performance IQ = .86, Processing Speed Quotient = .86, General Language Composite = .91, and Full Scale IQ = .92. The largest practice effects (scores increasing from first testing to second testing) across age bands were 5–6 points for Performance IQ and Processing Speech Quotient, while the average for all ages across the other domains were just under three points.

Validity. There are three major types of validity: content (does the assessment adequately sample relevant aspects of the construct being measured), criterion-related (scores are related to specified external criteria), and construct (when the construct measured by the test was actually measured). The WPPSI-III research team established validity by utilizing evidence from the test content, the response process, the internal structure, and the relationship to other variables. First, using

the response process, the internal structure, and the relationship to other variables. First, using intercorrelation studies, all intersubtest correlations on the WPPSI-III were statistically significant. For both age bands, the presence of moderate to high correlations supports the premise that a general intelligence factor is present. Second, factor analytic studies were used to evaluate the internal construct structure of the WPPSI-III. For both age bands, results were consistent with the

internal construct structure of the WPPSI-III. For both age bands, results were consistent with the predicted factor model proposed. In short, the WPPSI-III is a two-factor test, Verbal and Performance. For ages 4:0–7:3, a third factor includes Processing Speed. When only the core subtests were analyzed, the WPPSI-III subtests each loaded on its predicted factor, with the exception of Picture Concepts at ages 6:0–7:3. It loaded onto a Verbal subtest rather than on its intended factor

Concepts at ages 6:0–7:3. It loaded onto a Verbal subtest rather than on its intended factor (Performance). Finally, the relationship to other measures by locating constructions within a nomological network of known variables was conducted. The WPPSI-III was compared to the WPPSI-R, WISC-III, Bayley Scales of Infant Development-II, and Differential Abilities Scale. The global scales of these instruments correlated strongly with the WPPSI-III (.80–.89). The WPPSI-III Verbal Scale correlated

instruments correlated strongly with the WPPSI-III (.80–.89). The WPPSI-III Verbal Scale correlated substantially higher with the verbal scales of the WPPSI-R, WISC-III, and DAS than with the nonverbal scales of these instruments. The WPPSI IV and Wechsler Individual Achievement Tests II were both administered to 208 children to examine the relationship between the cognitive measure and academic achievment. The WIAT-II composites were variably correlated with the domain IQ scores of the

achievment. The WIAT-II composites were variably correlated with the domain IQ scores of the WPPSI-III ranging from .31 (Processing Speed Index and WIAT-II Reading) to .78 (Full Scale IQ and Total Achievement WIAT-II).

Clinical Uses  Special Subgroups  Because the WPPSI-III is often used as part of a diagnostic assessment, its clinical utility and specificity was examined through a number of special group studies conducted concurrently with the scale’s standardization. These samples were not randomly selected; instead, they were from a variety of educational and clinical settings. The sample sizes were small, and only group performance is reported. The following describes the special interest groups and their

only group performance is reported. The following describes the special interest groups and their performance in the WPPSI-III:

*   Intellectually gifted – this group obtained significantly higher Verbal, Performance, and Full Scale IQ than children in the normal population.
*   Children with mild or moderate mental retardation. For the mild severity subgroup, composite score for the group for Full Scale IQ was 62.1. For the moderate severity subgroup, average Full Scale IQ for the group was 53.1.

*   Children with developmental delays. Children in this group performed significantly worse than a matched control group with average Full Scale IQ score at 81.8.
*   Children with developmental risk factors. On all domains, IQ ranged from 85.7 to 88.6 with the exception of Processing Speed where the average IQ for the group was 90.1.
*   Children with autistic disorder. Consistent with research, the Performance IQ (mean 88.2) was significantly higher than the Verbal IQ (mean 70.6).

*   Children with expressive language disorder. Both groups’ mean composite score differences were greatest for Verbal IQ (mean 90.6) and Full Scale IQ (mean 90.1).
*   Children with mixed receptive-expressive language disorder. Average Verbal IQ was 83.1, Performance IQ was 85.2, Processing Speed IQ was 82.7, Full Scale IQ was 81.9, and General Language Composite was 86.7 representing significantly lower mean scores than a matched control group.

*   Children with Limited English Proficiency. No differences were found for Processing Speed and Performance IQ, but Verbal IQ averaged 80.2 and General Language Composite averaged 79.2.

*   Children with attention-deficit hyperactivity disorder. In the research and clinical literature, traditional IQ scores have not been found to be useful in discriminating children and adults with ADHD. Children with the disorder typically achieve scores near the normative range. In this subsample, all scores (subtests and domain scores) were between 93.8 (Verbal IQ) and 97.4 (Performance IQ).

*   Children with motor impairment. As expected, children with motor impairments scored significantly lower than the normative population on the Performance IQ (average 87.7) and marginally significantly lower on the Processing Speed IQ (average 89.9).
 Results from the special group studies indicate that the WPPSI-III is valid and clinically useful (with the exception of the ADHD category, but this is not specific to the WPPSI-III but general to all intelligence tests).

Interpretation *   WPPSI-III scores should never be interpreted in isolation. *   Standard scores enable practitioners to compare scores within the WPPSI-III and between the WPPSI-III and other related measures.
*   Age-corrected standard scores also allow for a comparison of children’s cognitive functioning across other children of similar age.
*   Other information (percentile ranks, descriptive classification, test-age equivalents) can also be used to benefit interpretation.

Profile analyses can be identified from both intraindividual and interindividual perspectives by comparing the child’s score patterns across subtests or to the appropriate normative reference group. This can aid in identifying meaningful patterns of strengths and weaknesses.

Wechsler Test of Adult Reading  Description  The Wechsler Test of Adult Reading (WTAR; Pearson 2001) was developed for estimating pre-morbid (pre-injury) intellectual functioning and pre-injury IQ and memory abilities. The WTAR takes less than 10 min to administer and is appropriate for individuals between the ages of 16–89 years of age. It is composed of 50 words that have atypical grapheme to phoneme translations. A grapheme is a letter or set of letters that correspond to a sound, or

to phoneme translations. A grapheme is a letter or set of letters that correspond to a sound, or phoneme, such as the f in the word fan, the ph in the word phone, or the gh in the word tough. The reason for relying on words that have unusual or irregular pronunciations is to test prior word knowledge by minimizing the individual’s ability to apply standard pronunciation rules. Thus, the test attempts to rely on the individual’s prior, or pre-injury, learning or knowledge of the word list that

to rely on the individual’s prior, or pre-injury, learning or knowledge of the word list that is presented. The rationale for this approach is that reading recognition is relatively stable, even when there is evidence of cognitive decline due to aging, illness, or brain injury. The WTAR record form includes the WTAR stimulus words with correct pronunciations and item scoring with an area for recording demographic data, the individual’s raw score, standard score, percentile rank, and a space for

demographic data, the individual’s raw score, standard score, percentile rank, and a space for predicting pre-morbid IQ and memory functioning from the current WTAR performance.

An advantage of the WTAR is that it was co-normed with the United States (US) and United Kingdom (UK) versions of the Wechsler Adult Intelligence Scale®-Third Edition (WAIS®-III) and Wechsler Memory Scale®-Third Edition (WMS®-III). Estimating pre-morbid or pre-injury level of intellectual functioning may be useful in treatment planning. This co-norming allowed for the development of equations for predicting both the WAIS-III and WMS index scores from the WTAR. A large representative norming

for predicting both the WAIS-III and WMS index scores from the WTAR. A large representative norming sample that was matched to both the US and UK populations was employed to provide demographic data that improves accurate prediction of pre-morbid IQ in neurological cases. There is extensive between group validity for individuals with Alzheimer’s disease, Huntington’s disease, Parkinson’s disease, Korsakoff’s syndrome, and Traumatic Brain Injury. However, there is limited information about

Korsakoff’s syndrome, and Traumatic Brain Injury. However, there is limited information about individuals with autism spectrum disorders. A key part of the rationale of the WTAR is the assumption of a normal development of reading skills prior to injury or cognitive decline. Individuals with ASD tend to perform well (and consistent with their level of cognitive ability) on mechanical reading and spelling (Minschew et al. 1994). Indeed, decoding or basic word identification, which is the skill

spelling (Minschew et al. 1994). Indeed, decoding or basic word identification, which is the skill that is assessed on the WTAR, is generally an area of strength amid poor reading comprehension (e.g., O’Connor and Hermelin 1994; Patti and Lupinetti 1993). Therefore, the WTAR may overestimate pre-morbid functioning. Just as assessment of single-word comprehension may overestimate general (sentence and paragraph) reading level (Newman et al. 2007), the WTAR may overestimate prior cognitive

and paragraph) reading level (Newman et al. 2007), the WTAR may overestimate prior cognitive capacities. Moreover, given that a majority of individuals with ASD are routinely assessed throughout childhood and adolescence to determine their need for academic accommodations, assessment of pre-morbid functioning may be best accomplished through a review or earlier testing reports.

Wechsler, David  David Wechsler was born on January 12, 1896, the youngest of seven children, to Moses Wechsler, a merchant, and Leah (Pascal) Wechsler, a shopkeeper, in Lespedi, Romania. The family immigrated to the United States in 1902 when famine and poor economic conditions in Romania led to “worsening the scapegoating of Jews and resulting in severe applications of existing anti-Jewish decrees” (Wasserman 2012, pp. 30–31). He died at the age of 85 in New York City on May 2, 1981.

His experiences just before, during, and after America’s entry into the World War I paved the way for him to become the world’s leading expert in intelligence testing and clinical assessment. In 1917, working with testing pioneer Robert S. Woodworth at Columbia University, Wechsler earned his M.A. in experimental psychopathology on retention in Korsakoff’s psychosis; that same year, he also worked under E. G. Boring, scoring army intelligence tests, as a civilian volunteer. After induction,

under E. G. Boring, scoring army intelligence tests, as a civilian volunteer. After induction, while serving in the army’s psychology division in Fort Logan, Texas, Corporal Wechsler administered individual intelligence tests, including the Stanford-Binet, to recruits who could not be validly assessed by the army group tests (e.g., illiterates, suspected malingerers). In 1919, as an army student at the University of London, he worked closely with Karl Pearson (who developed the coefficient of

at the University of London, he worked closely with Karl Pearson (who developed the coefficient of correlation) and Charles Spearman (who promoted the theory of general intelligence or “g”). He then studied at the Sorbonne for 2 years, specializing in experimental and physiological psychology (Edwards 1994). By the time he earned his Ph.D. in 1925, under Woodworth at Columbia (on the measurement of emotional reactions via the galvanic skin response), his meteoric career was already on the rise.

emotional reactions via the galvanic skin response), his meteoric career was already on the rise. As Wasserman (2012) notes, “Columbia was one of the few major universities that provided graduate experimental psychology training with a willingness to address applied problems, termed experimental abnormal psychology by Woodworth” (p. 31) (and later called clinical psychology).

“In many ways, David Wechsler was an unexpected success – coming to the United States as a child amid a flood of Eastern European immigrants, losing both parents by the age of 10, compiling a relatively ordinary academic record in high school and college (while graduating early),"... "and not having become a naturalized citizen prior to the war. Even so, these risk factors may have been somewhat ameliorated by the following: (1) the guidance of his accomplished older brother, pioneering

ameliorated by the following: (1) the guidance of his accomplished older brother, pioneering neurologist Israel S. Wechsler, who became his caretaker and role model; (2) the opportunity to provide military service as an army mental test examiner, which allowed him to thereby quickly learn about assessment and make key professional contacts; and (3) receiving his graduate education and professional psychology training at an opportune time and place in the development of what eventually would

psychology training at an opportune time and place in the development of what eventually would become clinical psychology.” (Wasserman 2012, p. 30)

In the mid-1920s, Wechsler was in the first wave of clinical psychologists, a breed of scientist-practitioners that represented a notable departure from the purely academic and experimental tradition of the American Psychological Association (APA). He was among the first to set up a private clinical practice and, in 1932, became chief psychologist at Bellevue Psychiatric Hospital, a post he held until 1967. Concurrently (1933–1967), he was a faculty member at New York University College of

until 1967. Concurrently (1933–1967), he was a faculty member at New York University College of Medicine. Wechsler’s test development techniques (combining verbal and nonverbal skills to produce a truly global measure of intelligence, a notion first sparked by scoring the group-administered Army Alpha and Army Beta, verbal and nonverbal tests, respectively); (Yoakum and Yerkes 1920) and his clinical approach to the assessment of intelligence are among the greatest innovations in applied

clinical approach to the assessment of intelligence are among the greatest innovations in applied psychology during the twentieth century. “Probably the work of no other psychologists, including Freud or Pavlov, has so directly impinged upon the lives of so many people” (Matarazzo 1981, p. 1542).

French pioneer Alfred Binet developed the first intelligence test in 1905 (the Binet-Simon) and Stanford psychologist Lewis Terman translated and adapted Binet’s work within the United States to produce the Stanford-Binet Intelligence Scale in 1916. However, it was American psychologist David Wechsler who dramatically, and permanently, changed the face of intelligence testing when he published the Wechsler-Bellevue (W-B), for ages 7–69 years, in 1939 (known in the literature as the W-B Form I

Wechsler-Bellevue (W-B), for ages 7–69 years, in 1939 (known in the literature as the W-B Form I because Form II was published in 1946). Wechsler’s intelligence (or “IQ”) tests departed from Binet’s and Terman’s approach to measuring mental ability. Binet and Terman used mostly verbal tasks to measure intelligence, whereas Wechsler added a performance (nonverbal) scale to a verbal scale, with both contributing equally to a person’s full-scale IQ. The Binet-Simon and Stanford-Binet offered a

both contributing equally to a person’s full-scale IQ. The Binet-Simon and Stanford-Binet offered a single score, global IQ, plus mental age (MA); the W-B offered verbal, performance, and full-scale IQs, along with a profile of scaled scores on 11 separate subtests (one of which, vocabulary, was an alternate and did not contribute to the IQs). The 1916 Stanford-Binet and its subsequent editions in 1937, 1960, and 1972 (coauthored by Maud Merrill) were routinely administered to children,

in 1937, 1960, and 1972 (coauthored by Maud Merrill) were routinely administered to children, adolescents, and adults; however, they were never standardized (normed) on adult populations. Consequently, when Wechsler published the W-B, standardized on children and adults (including older adults), he effectively developed the first real test of adult intelligence. And, in 1939, he replaced the ratio IQ that had become a staple in the Binet scales with the “deviation IQ.” Ratio IQs were based on an

IQ that had become a staple in the Binet scales with the “deviation IQ.” Ratio IQs were based on an old formula that compared mental age to chronological age and represented a “rubber yardstick” because 1 year’s growth is quite different at age 5, 9, or 15; the outmoded formula also was not applicable to adults. By contrast, deviation IQs are standard scores with a mean of 100 and a standard deviation (SD) of 15 for all three IQs at all ages. They are derived from the concepts of the normal

(SD) of 15 for all three IQs at all ages. They are derived from the concepts of the normal curve and standard deviations, which avoid problems associated with ratio IQs. Wasserman (2012) points out that “Wechsler deserves credit for popularizing the deviation IQ, although the Otis Self-Administering Tests and the Otis Group Intelligence Scale had already used similar deviation-based composite scores in the 1920s” (p. 35).

Wechsler’s (1939) definition of intelligence has been widely quoted: Intelligence is the aggregate or global capacity of the individual to act purposefully, to think rationally and to deal effectively with his environment. It is global because it characterizes the individual’s behavior as a whole; it is an aggregate because it is composed of elements or abilities which, though not entirely independent, are qualitatively differentiable. By measuringement of these abilities, we ultimately

independent, are qualitatively differentiable. By measuringement of these abilities, we ultimately evaluate intelligence. But intelligence is not identical with the mere sum of these abilities, however inclusive. In this definition, he shows the influence of Spearman’s g on his theory but also makes it clear that there is more to intelligence than g.

But Wechsler’s lasting imprint was as a test developer, not as a theorist. And, ultimately, his greatest contribution may have been his clinical approach to the measurement of intelligence. When the Stanford-Binet reigned supreme prior to the publication of the W-B, the main approach to test interpretation was psychometric, with the focus on the precise IQ, its percentile rank, the band of error surrounding the IQ, and group differences in mean IQ (e.g., urban versus rural children); the main

surrounding the IQ, and group differences in mean IQ (e.g., urban versus rural children); the main book on Stanford-Binet interpretation was written by McNemar (1942), a statistician. Wechsler changed all that. He believed that intelligence was part of personality and that personality variables affected how a person performed on an IQ test. He encouraged examiners to interpret the IQs and subtest scaled scores within the context of the clinical behaviors observed during the evaluation and the

scaled scores within the context of the clinical behaviors observed during the evaluation and the reasons for referral (emotional disturbance, dementia) and to interpret responses to specific items (e.g., verbal answers on social comprehension questions) in terms of their clinical content. Thanks in large part to his experiences as an examiner during wartime, his clinical acumen, and his responsibilities at Bellevue Hospital, which brought him into one-on-one contact with individual patients

at Bellevue Hospital, which brought him into one-on-one contact with individual patients from diverse backgrounds with an array of diagnoses, Wechsler (in conjunction with innovators such as Rapaport et al. 1945) changed IQ measurement from psychometric testing to clinical assessment. That distinction still characterizes the training of clinical psychologists and neuropsychologists worldwide.

An immediate benefit of the Wechsler approach to IQ testing was the large number of reliable and valid scores yielded by his tests – three IQs and an array of a dozen or so scaled scores on separate subtests. The full-scale IQ provides a global measure of intelligence (as was provided by the Stanford-Binet). However, the addition of separate verbal and performance IQs allowed examiners to determine whether a person was better able to express his or her intelligence via verbal comprehension and

whether a person was better able to express his or her intelligence via verbal comprehension and expression or nonverbally via the manipulation of concrete materials. And the subtest scaled scores – standard scores with a mean of 10 and SD of 3 for all subtests at all ages – permitted clinicians to examine a person’s profile of strengths and weaknesses on cognitive tasks such as information, similarities, block design, and picture arrangement. The separate IQs and the profile of scaled scores

block design, and picture arrangement. The separate IQs and the profile of scaled scores provided a breakthrough for researchers and clinicians who needed to go beyond a single, global IQ to better understand a person’s abilities and disabilities. The global IQ masked areas of strength and weakness. The W-B, and later the 1949 Wechsler Intelligence Scale for Children (WISC) and 1955 Wechsler Adult intelligence Scale (WAIS), spawned state-of-the art research with patients diagnosed with

Adult intelligence Scale (WAIS), spawned state-of-the art research with patients diagnosed with neurological impairment in the left versus right hemisphere (Reitan 1955; Meyer and Jones 1957), with children and adolescents referred for reading and learning disabilities (Bannatyne 1971), and with individuals diagnosed with autism (Murata et al. 1974; Wassing 1965). The comparison of verbal IQ with performance IQ (V-P discrepancy) was espe-cially crucial for understanding the strengths and

with performance IQ (V-P discrepancy) was espe-cially crucial for understanding the strengths and weaknesses of individuals with left-hemisphere damage (P > V), right-hemisphere damage (V > P), and autism (P > V). The separate IQs also contributed mightily to understanding the differential effects of aging on intelligence (Feingold 1950; Jarvik et al. 1962) and to the theory of fluid and crystallized intelligence (Horn and Cattell 1966). The profile of scaled scores was found to be particularly

intelligence (Horn and Cattell 1966). The profile of scaled scores was found to be particularly useful for identifying children with reading disabilities and for understanding the language problems of individuals with autism or other language disorders (e.g., comparing their performance on verbal subtests that required much verbal expression, such as vocabulary, with their performance on tasks like information that required little verbal expression). For reviews of studies on Wechsler profiles

information that required little verbal expression). For reviews of studies on Wechsler profiles for children and adults diagnosed with autism spectrum disorders, including Asperger’s disorder, consult Barnhill et al. (2000), Klin et al. (2000), and Lichtenberger and Greenberg (2009).

The Stanford-Binet remained the most popular IQ test into the early 1960s, even after the WISC and WAIS were published. However, as the fields of learning disabilities, neuropsychological assessment, and autism began to grow exponentially during the 1960s and started to dominate clinical practice in schools and clinics, Wechsler’s scales surpassed the Stanford-Binet. By the time the WISC revision (WISC-R) was published in 1974, Wechsler’s scales for children and adults were by far number one in

(WISC-R) was published in 1974, Wechsler’s scales for children and adults were by far number one in the United States, and his scales have remained number one, worldwide, into the second decade of the twenty-first century. The WISC-IV and WAIS-IV are dominant, and the Wechsler Preschool and Primary Scale of Intelligence, Third Edition (WPPSI-III) is a popular choice for assessing young children. Not shown in the figure is Wechsler’s widely used memory test for adolescents and adults, the Wechsler

shown in the figure is Wechsler’s widely used memory test for adolescents and adults, the Wechsler Memory Scale (WMS), now in its fourth edition (WMS-IV).

“For his master’s thesis completed in 1917, Wechsler patched together a clinical memory battery from existing published and unpublished tests [,] . . . a pattern he was later to follow with intelligence tests” (Wasserman 2012, p. 31). But his approach to test construction does not diminish his amazing innovations, including his insistence (in a Binet-dominated world) that nonverbal assessment must accompany verbal assessment to yield a truly global measure of a person’s intelligence or his

must accompany verbal assessment to yield a truly global measure of a person’s intelligence or his assertions that IQs and scaled-score profiles are only meaningful when interpreted within a rich clinical context, points that he introduced to the world with eloquence in his landmark articles and books (e.g., Wechsler 1928, 1930, 1935, 1939, 1944, 1950, 1958, 1971, 1975). And his genius did not diminish with age. When I worked with Wechsler on the revision of the WISC in the early 1970s, “he was

with age. When I worked with Wechsler on the revision of the WISC in the early 1970s, “he was in his mid 1970s and as active and involved in his tests as ever. He showed me notebooks filled with new items, including comic strips he had cut out from newspapers to adapt for nonverbal test items. With his own tool kit, he had constructed a variety of wooden dolls and formboards, always in search of new ways of measuring mental ability.” (Kaufman 2009b, p. 34)

He even analyzed himself: “After completing his fellowship at the Sorbonne, Wechsler traveled through France, Switzerland, and Italy, before reluctantly returning to the United States.... His ambivalence about returning, as disclosed to Edwards (1974), was reflected in his 1922 paper on the psychopathology of indecision” (Wasserman 2012, p. 33). And his ideas were consistently decades, even generations, ahead of his time. Wechsler (1935) was an early advocate of measuring adaptive behavior

ahead of his time. Wechsler (1935) was an early advocate of measuring adaptive behavior skills, urging that daily behaviors, social demands, and functional living skills be considered alongside IQ test results before assigning a mental deficiency diagnosis. As J. D. Wasserman (personal communication, July 27, 2011) pointed out, Wechsler’s approach is “entirely congruent with even contemporary standards for diagnosing intellectual disability (Schalock and The AAIDD Ad Hoc Committee on Terminology

for diagnosing intellectual disability (Schalock and The AAIDD Ad Hoc Committee on Terminology and Classification 2010).” He also reflected current philosophies by urging caution and sensitivity about the consequences of applying labels such as mental deficiency and genius based solely on IQ, because “Too much is at stake” (Wechsler 1971, p. 54).

In Wechsler’s lifetime, his scales were organized around the distinction between V and P IQs. Subsequent versions have emphasized four indexes, two of which replaced V IQ and P IQ (verbal comprehension index, or VCI, and perceptual reasoning index, or PRI), and two of which were new: working memory index (WMI) and processing speed index (PSI). L. G. Weiss (personal communication, July 26, 2011) noted that Wechsler’s “early notions on the importance of mental manipulation (Arithmetic/Digit

noted that Wechsler’s “early notions on the importance of mental manipulation (Arithmetic/Digit Span) and mental speed (Digit Symbol/Coding) were borne out by modern research and subsequently fleshed out into WMI and PSI, which increased his test’s sensitivity to clinical disorders and extended his influence well into the twenty-first century.” In a 1976 interview, Wechsler credited Woodworth and E. L. Thorndike as contributing most to his intellectual development, and he also praised Augusta

E. L. Thorndike as contributing most to his intellectual development, and he also praised Augusta Bronner and William Healy for refining his clinical skills: “they were both wonderful clinicians and they were the first, as I recall, who had discussions of every individual case at which first the social worker would present her history, then the psychiatrist, then the psychologist, and they either praised the individual and so forth on the basis of these conferences” (Hargus and Wasserman 1993).

Wellbutrin Bupropion  Wernicke, Karl (1848–1905)  *   Carl Wernicke (May 15, 1848–June 15, 1905) *   Doctor of Medicine (Psychiatry) *   University of Breslau  Major Appointments (Institution, Location, Dates)  *   Professor of Psychiatry and Nervous Diseases, University of Halle, Halle, Germany, 1904
*   Associate Professor of Neurology and Psychiatry, University of Breslau, Wroclaw, Poland, 1885

*   Associate Professor of Neurology and Psychiatry, University of Breslau, Wroclaw, Poland, 1885
*   Scientist, Department of Psychiatry and Nervous Diseases, Berlin Charité Hospital, Berlin, Germany, 1878

Major Honors and Awards  *   Member Royal College of Psychiatry (1957) *   Fellow Royal College of Psychiatry (1972) *   Honorary Fellow of Psychiatry, University of Edinburgh  Landmark Clinical, Scientific, and Professional Contributions  Wernicke is best known for his theory of aphasia, publishing a manuscript entitled “The Aphasia Symptom Complex” in 1874 when he was 26 years old. This publication catapulted Wernicke as the leader in aphasia research. Several years later, Wernicke published

catapulted Wernicke as the leader in aphasia research. Several years later, Wernicke published a textbook on brain diseases. In this book, he described a condition called “pseudoencephalitic haemorrhagica superior,” later to be known as “Wernicke’s encephalopathy.” In addition to his work on aphasia, Wernicke pioneered a technique for drainage of cerebral spinal fluid in patients with hydrocephalus.

Short Biography  Karl Wernicke was born in Wroclaw, Poland, in 1848. He studied medicine at the University of Breslau. Upon completion of his medical degree, Wernicke completed training in psychiatry. Wernicke worked under and collaborated with a variety of neuroscientists and neuropsychiatrists prior to designing his theory of aphasia. Wernicke discovered that damage to the left posterior, superior temporal gyrus resulted in deficits in language comprehension. This region of the brain is

superior temporal gyrus resulted in deficits in language comprehension. This region of the brain is commonly referred to as “Wernicke’s Area,” and the syndrome in which damage to this region of the brain occurs often results in what is now known as “Wernicke’s aphasia.” Following Wernicke’s publication of his aphasia manuscript, he was appointed to the Department of Psychiatry and Nervous Disease of the Berlin Charité Hospital in 1878. During his time at the hospital, there was a significant

of the Berlin Charité Hospital in 1878. During his time at the hospital, there was a significant discord between Wernicke and the administration. This conflict forced Wernicke into private practice. Despite this conflict, Wernicke remained active in both clinical care and research activities. He continued to publish and pioneer new techniques in the field of neuroscience. In 1885, Wernicke became Professor of Psychiatry at Breslau Psychiatric Hospital at the university where he opened an outpatient

of Psychiatry at Breslau Psychiatric Hospital at the university where he opened an outpatient clinic for individuals with neurological pathology. Unfortunately, there was tension between Wernicke and the hospital. Wernicke was ultimately forced to leave his position. In 1904, Wernicke was offered the Chair of Psychiatry and Nervous Diseases at University of Halle. Wernicke continued his work in neurological disease at the university until his untimely death due to a bicycle accident in 1905 at

disease at the university until his untimely death due to a bicycle accident in 1905 at the age of 58. Although Wernicke died relatively early, his work continues to have significant influence in the fields of neurology and psychiatry.

Wernicke’s Aphasia  Synonyms Fluent aphasia; Receptive aphasia; Sensory aphasia  Short Description or Definition  Wernicke’s aphasia is a condition that is associated with damage to Brodmann area 22 in the left posterior superior temporal gyrus. The disorder is named for Karl Wernicke, the individual who is credited with first recognizing it. Wernicke’s aphasia is also known as fluent aphasia or receptive aphasia as deficits tend to be in the content of the spoken message rather than speech

or receptive aphasia as deficits tend to be in the content of the spoken message rather than speech output. As such, individuals with Wernicke’s aphasia use sentences that are intact in terms of syntax, grammar, rate of speaking, and prosody but demonstrate difficulties with content such as vocabulary. Error patterns include word substitutions, additions, and difficulties with word order. In addition, patients demonstrate extreme difficulty in comprehending both what they themselves are saying and

patients demonstrate extreme difficulty in comprehending both what they themselves are saying and what is being said to them.

Categorization  Wernicke’s aphasia is considered a fluent aphasia within larger aphasia classification systems.
 Epidemiology  Estimates of the prevalence of Wernicke’s aphasia in the larger population are largely unknown, though it has been estimated that 80,000 people develop aphasia in the United States each year.

Clinical Expression and Pathophysiology  Wernicke’s aphasia often occurs as the result of damage to left posterior superior temporal gyrus. The condition manifests itself as a fluent aphasia in which an individual demonstrates relatively fluent language output. However, this output is characterized by the use of extra words, “made-up” words, or words that are out of order. In addition, language comprehension skills are largely impaired in individuals with Wernicke’s aphasia.

Treatment  Treatment for Wernicke’s aphasia is often multi-faceted and is typically individualized based on the patient’s profile of strengths and needs. Individuals with aphasia often enroll in formal speech-language therapy to address functional communication in a variety of settings in which they are expected to communicate. Therapy goals are focused on maximizing the individual’s ability to communicate effectively with peers and family members, given residual strengths. For individuals with

effectively with peers and family members, given residual strengths. For individuals with Wernicke’s aphasia, it is critical to support both comprehension and production; although speech/language output is fluent, patients often do not comprehend what they are saying or what is being said to them. Although some individuals recover completely, individuals with aphasia often experience lifelong deficits. In these cases, family member and patient support groups are often a critical piece of the

deficits. In these cases, family member and patient support groups are often a critical piece of the therapeutic process as the patient and family learn to manage their new situation.

West Syndrome Infantile Spasms/West Syndrome  Whole-Genome Sequencing Next-Generation Sequencing  Wide Range Assessment of Memory and Learning (WRAML)  Synonyms WRAML-2; WRAML2  Description  The WRAML2 (Sheslow and Adams 2003) is a clinical assessment instrument designed to evaluate memory and learning in children and adults (ages 5–90 years). The test is administered individually with the examiner presenting items and recording responses. Three index scores are derived from six core subtests

presenting items and recording responses. Three index scores are derived from six core subtests assessing verbal memory, visual memory, and attention-concentration. In addition, a general memory standard score can be calculated. Supplementary subtests provide the opportunity to assess working memory, recognition memory, and delayed recall. A more brief “memory screening” option is also available.

Content  In all, the WRAML2 is comprised of 6 core subtests and 11 optional subtests, generating 9 possible global index scores. Several subtests from the original WRAML (Sheslow and Adams 1990) are now optional (e.g., Sentence Memory) or limited to a specific age group (e.g., Sound Symbol for ages 5–8 years; Verbal Working Memory and Symbolic Working Memory for individuals 9 years of age and older). New additions include two subtests to assess working memory and four recognition memory tasks.

New additions include two subtests to assess working memory and four recognition memory tasks. In addition, items have been updated on existing subtests, such as contemporary full-color scenes on the Picture Memory subtest, revised stories in story memory (lengthened to accommodate adults), and more contemporary language on the Sentence Memory subtest. One subtest from the WRAML, Visual Learning, has been eliminated. The core battery can be individually administered in under an hour, and a

has been eliminated. The core battery can be individually administered in under an hour, and a memory screening form, composed of four subtests, requires 10–15 min administration time and correlates highly (r =.91) with the full test. The WRAML2 yields standard scores, scaled scores, and percentiles. The test also provides several qualitative analyses scores. Age equivalents are available for the child and preadolescent age groups. Subtest raw scores are converted into scaled scores based on a

child and preadolescent age groups. Subtest raw scores are converted into scaled scores based on a mean of 10 and standard deviation of 3. Index scores are derived from the sum of the relevant subtest scores and reported with a mean of 100 and standard deviation of 15 for age-based performance comparisons. A profile grid is provided allowing the examiner to plot scores across subtests and indexes for interpretation. A computerized scoring program is also available. The global domains

indexes for interpretation. A computerized scoring program is also available. The global domains (underlined) and subtests (italicized) of the WRAML2 are described briefly below:

*   Verbal Memory Index. An index of how well the individual is able to learn and recall both meaningful verbal information and relatively rote verbal information.
*   Story Memory Subtest. A measure of memory for contextualized or meaningful verbal information. Two short stories are read to the examinee; following each story, the examinee is asked to orally recall as much of the story as he/she can remember.

*   Verbal Learning Subtest. A measure of how well the individual actively learns, with practice opportunities, and is able to recall meaningful verbal information that is without context. The evaluator reads a list of common, single-syllable words followed by an immediate free recall trial; this list is repeated across four trials.

*   Visual Memory Index. An index of how well the individual can learn and recall both meaningful (i.e., pictorial) and minimally related, rote (i.e., design) visual information.
*   Design Memory Subtest. A measure of memory for visual material that is minimally meaningful. Five cards, each with an array of geometric shapes, are exposed, and then after a brief delay, the examinee is asked to draw what is remembered.

*   Picture Memory Subtest. A measure of nonverbal immediate memory for contextualized information or meaningful information. The examinee is shown a colorful, everyday scene that he/she can scan for 10 s before it is removed. Then a similar alternate scene is immediately presented, and the participant must determine the elements that have been moved, changed, or added.

*   Attention/Concentration Index. An index of how well the individual can learn and recall relatively nonmeaningful rote, sequential information. The tasks comprising this index require brief attentional demands and/or immediate rote recall abilities.
*   Finger Windows Subtest. A measure of nonverbal, rote sequential recall; the examinee is asked to repeat gradually more difficult visual sequential patterns demonstrated by the examiner.

*   Number Letter Subtest. A measure of auditory, rote sequential recall; the examinee is asked to repeat a series of items consisting of progressively longer number and letter sequences that are dictated by the examiner.
*   General Memory Index. An index of overall memory functioning derived from performance on the six core subtests above.

*   Working Memory Index. An index of how well the individual can operate on (e.g., add to, reorganize, or manipulate) and retain information that is held in the short-term memory buffer (i.e., in an active, online state).

*   Verbal Working Memory (for ages 9 years and older). A measure of how well an individual retains information that is manipulated while it is in short-term memory. The examinee listens to a list of nouns that are both animals and nonanimals and, immediately thereafter, is required to recall the words in a specified reorganized order.

*   Symbolic Working Memory (for ages 9 years and older). A measure of how well a person actively operates on and retains symbolic information (e.g., numbers, letters) prior to recall. Memory and attention are important for this task, and executive skills are also involved in finding an appropriate learning strategy.
*   Verbal Recognition. An index of how well specific verbal information that was presented previously during this testing session is recognized following a short delay (15–20 min).

*   Story Memory Recognition. A measure of recognition memory using a multiple-choice format with questions from each previously presented story. A comparison can be made between free recall (in the immediate recall and the delayed recall story memory formats) and recognition.
*   Verbal Learning Recognition. Provides a measure of recognition recall of verbal information presented previously as part of the verbal learning subtest.

*   Visual Recognition. An index of how well the individual can recognize specific nonverbal or visual information that was presented previously in the session (i.e., approximately 15–20 min earlier).

*   Design Memory Recognition. A measure of recognition recall of visual information that was viewed approximately 20 min earlier. The examinee is asked to look at and distinguish between designs that were and were not presented earlier in the testing session. It involves attention to visual detail and executive skills.

*   Picture Memory Recognition. A measure of recognition of previously presented meaningful visual information or contextualized visual information, such as that found in pictures, in scenes, or in the environment.

*   General Recognition. In contrast to memory retrieval as represented in the verbal memory index and the visual memory index scores, the general recognition index provides an estimate of how well the individual can recognize specific verbal and visual information that was presented previously (i.e., approximately 15–20 min earlier). This information is relevant to initial encoding strategies.

*   Delay Recall. No global index score is provided for delayed recall; however, for each individual subtest, retention scores are generated providing a measure of memory decay over time.
*   Story Memory Delay Recall. A measure of memory for a meaningful verbal narrative over a 10–15-min delayed interval.
*   Verbal Learning Delay Recall. A measure of memory retrieval after the initial learning of new verbal information (approximately 15 min after initial learning).

*   Sound Symbol Delay Recall (for ages 8 and younger). A measure of memory retrieval for paired associates (visual-auditory verbal) over a short delay.
*   Additional Subtests *   Sentence Memory. A measure of immediate verbal memory skills similar to those needed to follow novel verbal directions or to relay a brief phone message accurately. On this subtest, the examinee is required to repeat dictated single sentences of increasing length.

*   Sound Symbol (for ages 8 and younger). A measure of paired-associate memory and learning. The examiner shows a symbol appearing on a page of the easel booklet and then identifies its sound that the child then repeats. The child is asked to try to recall that same sound when he/she sees the same symbol.

Historical Background  The first edition of the WRAML was published in 1990, filling a need for a comprehensive well-normed battery assessing children’s memory functioning. The original WRAML was normed for children ages 5–17 years. The second edition, published in 2003, provides updated and extended norms (ages 5–90 years) as well as new test material. Focus groups were used to obtain first-hand information about improving the test; an item “tryout” was followed by a standardization program.

information about improving the test; an item “tryout” was followed by a standardization program. Only one subtest (Visual Learning) was eliminated in the revision.

Psychometric Data  Norms. The standardization edition of the WRAML2 was administered to 1200 individuals across 22 states, representing different geographical regions. A national stratified sampling technique was used, controlling for age, sex, race, region, and education, with efforts to make the normative sample mirror the 2001 US Census. Slight variations in the normative sample from census data were corrected with a statistical weighting procedure.

Reliability. Scores from the WRAML2 are highly reliable. Reliability coefficients for the core battery Verbal Memory Index, Visual Memory Index, and attention/Concentration Index are .92, .89, and .86A, respectively. The alpha reliability for the general index is .93. Internal consistency for the six core subtests is also shown to be very good, with Cronbach’s alpha coefficients ranging from .82 to .96. The range is wider for the optional subtests (.63–.96). Test-retest reliability indicates a

to .96. The range is wider for the optional subtests (.63–.96). Test-retest reliability indicates a substantial learning effect from one test time to another (median administration lag of 49 days) with an overall gain of approximately +1 scaled score on subtests. Therefore, reliability correlations are lower with correlations between .53 and .85 for core subtests and indexes and .47 to .80 for optional subtests. Inter-rater reliability was quite high (.98).

Validity. Internal validity was assessed via examination of item content, subtest intercorrelations, exploratory factor analyses, confirmatory factor analysis, and differential item functioning. Item separation reliabilities, indicating how well the items define the variable being measured, were high (.90–1.00 for all subtests). Intercorrelations of the WRAML2 indexes and subtests were high for the older group (9 years to adult) but more variable in younger children. Results from factor analysis

older group (9 years to adult) but more variable in younger children. Results from factor analysis studies supported the internal validity of the WRAML2. External validity was examined by comparing scores on the WRAML2 with related memory and learning measures, such as the Wechsler Memory Scale-III (WMS-III), Children’s Memory Scale (CMS), and the California Verbal Learning Test-II (CVLT-II). Correlations were moderate (e.g., r = .60 for the WRAML2 General Memory Index score and the WMS-III

Correlations were moderate (e.g., r = .60 for the WRAML2 General Memory Index score and the WMS-III General Memory Index score and r = .49 for the CMS). Moderate correlations were also found with cognitive measures (i.e., Wechsler Adult Intelligence Scale [WAIS-III] and the Wechsler Intelligence Scale for Children, Third Edition [WISC-II]) and with achievement tests (i.e., Wide Range Achievement Test 3 [WRAT3], and the Woodcock-Johnson, Third Edition [WJ-III] Tests of Achievement).

Clinical Uses  Learning and memory are fundamental to academic success. Therefore, an instrument such as the WRAML2 may be highly useful when evaluating individuals with a learning disability and/or school-related problems. For children with attentional difficulties, administration of the WRAML2 may help to clarify the contributions of attention, learning, and/or memory problems. This measure may also be used to assess memory impairment following head injury. The manual contains information

may also be used to assess memory impairment following head injury. The manual contains information about small studies involving learning disabled children and adults with traumatic brain injury, Alzheimer’s disease, and alcohol abuse, suggesting WRAML2 sensitivity to these influences.

Wide-Range Assessment of Visual-Motor Abilities Visual-Motor Integration, Developmental (VMI) Test  Wilbarger Protocol Deep Pressure Proprioception Touch Technique  Williams-Beuren Region Duplication 7q11.23 Duplications  Wing Subgroups Questionnaire (WSQ) Behavior Development Questionnaire Behavioral Development Questionnaire  Wing, Lorna  Landmark Clinical, Scientific, and Professional Contributions  In 1979, Lorna Wing and her Maudsley colleague, Judith Gould, published a landmark study of

In 1979, Lorna Wing and her Maudsley colleague, Judith Gould, published a landmark study of 173 children in Camberwell, South London, who had autistic features or had an IQ of under 50, or both. As Wing told Adam Feinstein in 2009, there were certainly some children who beautifully fitted Leo Kanner’s 1943 criteria for autism, “but there was a huge collection in the middle who could not be put into either category. Very few fitted Asperger’s syndrome, because they virtually all had an IQ of

into either category. Very few fitted Asperger’s syndrome, because they virtually all had an IQ of under 60 and none were mainstreamed.” From their findings, Wing and Gould concluded that there was clearly a broader autism phenotype. This inspired them to introduce the concept of the triad of impairments in autism: deficits in social relations, communication, and imagination, a concept still used by diagnosticians today. Some researchers, like Francesca Happé at London’s Institute of Psychiatry,

diagnosticians today. Some researchers, like Francesca Happé at London’s Institute of Psychiatry, maintain that, while the Wing-Gould version does indeed form a true unitary triad, the DSM-IV and ID-10 notion of repetitive behavior – rather than imagination – as the third element has meant that the triad becomes “fractionable” (in the sense that the three elements may have separate causes at the genetic, neurological, and cognitive levels).

Short Biography  Dr. Lorna Wing, FRCPsych, born on October 7, 1928, is an English psychiatrist and physician and one of the world’s leading autism authorities. As a result of having an autistic daughter, Suzie, she became involved in researching developmental disorders, particularly autism spectrum disorders. She joined with other parents of autistic children to found the National Autistic Society (NAS) in the United Kingdom in 1962. She currently works part time as a consultant psychiatrist

(NAS) in the United Kingdom in 1962. She currently works part time as a consultant psychiatrist at the NAS Centre for Social and Communication Disorders at Elliot House. Wing is the author of many books and academic papers, including Asperger’s Syndrome: a Clinical Account, a 1981 academic paper that popularized the research of Hans Asperger and introduced the term “Asperger’s syndrome.” Although groundbreaking and influential, Wing herself cautioned in her 1981 paper that “it must be pointed

groundbreaking and influential, Wing herself cautioned in her 1981 paper that “it must be pointed out that the people described by the present author all had problems of adjustment or superimposed psychiatric illnesses severe enough to necessitate referral to a psychiatric clinic . . . (and) the series described here is probably biased towards those with more severe handicaps.”

Books  *   (1964). Autistic children. *   (1966). Physiological measures, sedative drugs and morbid anxiety, with M.H. Lader.
*   (1969). Children apart: Autistic children and their families. *   (1969). Teaching Autistic children: Guidelines for teachers. *   (1971). Autistic children: A guide for parents. *   (1975). Early childhood autism: Clinical, educational and social aspects (editor).

*   (1975). What is operant conditioning? *   (1988). Aspects of autism: Biological research (editor). *   (1989). Hospital closure and the resettlement of residents: Case of Darenth park mental Handicap hospital.
*   (1995). Autistic spectrum disorders: An aid to diagnosis. *   (1996). The autistic spectrum: A guide for parents and professionals. *   Waites, J., & Swinbourne, H. (2002). Smiling at shadows: A mother’s journey raising an autistic child.

Winkleman v. Parma City School District (2007 Rights Under IDEA)  Definition  In General  In this case, the U.S. Supreme Court held that the Individuals with Disabilities Education Act (IDEA) grants parents independent, enforceable rights. Parents are not limited to bringing claims on behalf of their child or claims based on procedural and reimbursement-related matters, but may sue to enforce their own rights to a “free appropriate public education” (FAPE) for their children. The Supreme Court

own rights to a “free appropriate public education” (FAPE) for their children. The Supreme Court based its decision on statutory analysis, legislative intent, and policy considerations (Steiner 2008, p. 1172). IDEA entitles parents to voice their concerns as part of the individualized education program and (IEP) team as well as to submit a complaint concerning the adequacy of the education, the IEP’s construction, or other related matters. “Any party aggrieved,” including a parent, also has the

construction, or other related matters. “Any party aggrieved,” including a parent, also has the right to bring a civil action based on that complaint. Additionally, IDEA’s express purpose is to protect “the rights of children with disabilities and parents of such children.” The court held that IDEA was intended to confer separate rights to parents of children with disabilities.

Implications for ASD Students  Since parents have their own independent rights under IDEA, a parent of a student with an autism spectrum disorder (added to IDEA’s list of disabilities in 1991), whether or not he or she can afford an attorney, now has the right to enforce his or her rights as a parent to obtain a quality education for their child. This makes IDEA a more substantive and robust reform of special education law (McNeal).

Litigation Strategies  While the decision appears clear-cut, it has led to significant confusion and problems in the lower courts (Zirkel 2009, p. 1). It triggers many larger issues, which are not resolved by the court. For example, there is no clear distinction between the child’s rights under IDEA and the rights of the parents and no sense of what remedy there is for a violation of parental rights. In addition, there is a concern that this decision allows parents to represent their children’s

In addition, there is a concern that this decision allows parents to represent their children’s substantive interests pro se which violates common law principles and public policy considerations (Steiner 2008, p. 1181). These considerations seek to ensure that children are represented by those that can best represent them. Still, the decision does clearly allow parents to lower the potential costs of litigation by suing without representation.

WISC WISC – V  WISC – V  Synonyms WISC  Description  The Wechsler Intelligence Scale for Children–Fifth Edition (WISC–V) is a standardized clinical assessment instrument. The clinical instrument assesses general cognitive abilities in children ages 6–16 years 11 months; specifically, it assesses general problem-solving and reasoning skills in verbal, nonverbal, and visual domains, as well as working memory and processing speed in children and adolescents. This test is individually administered,

memory and processing speed in children and adolescents. This test is individually administered, scored, and interpreted by a trained clinician. Administration typically can be completed within 60–90 min. The WISC–V results in standard scores according to age-referenced norms from a national sample; standard scores can be calculated for specific cognitive indices as well as one or more global indicators of cognitive ability including a Full-Scale Intelligence Quotient (Full-Scale IQ). The WISC–V

of cognitive ability including a Full-Scale Intelligence Quotient (Full-Scale IQ). The WISC–V framework consists of a Full-Scale Index (or Full-Scale IQ), in addition to primary, ancillary, and complementary indices that are made up of various combinations of primary, secondary, and complementary subtests that are the actual tasks administered by the clinician to the individual. The primary indices that form the core of the cognitive measure are Verbal Comprehension (VCI), Visual Spatial (VSI),

that form the core of the cognitive measure are Verbal Comprehension (VCI), Visual Spatial (VSI), Fluid Reasoning (FRI), Working Memory (WMI), and Processing Speed (PSI). These indices are the result of a five-factor model of cognitive abilities (Wechsler 2014). The five primary indices are derived from ten primary subtests: Vocabulary, Similarities, Block Design, Visual Puzzles, Matrix Reasoning, Figure Weights, Digit Span, Picture Span, Coding, and Symbol Search. Two primary subtests make up

Figure Weights, Digit Span, Picture Span, Coding, and Symbol Search. Two primary subtests make up each index score, with complementary subtests rounding out a fuller measurement of the cognitive abilities of each index area.

The Verbal Comprehension Index (VCI) is comprised of the primary subtests, Similarities and Vocabulary, and the secondary subtests, Information and Comprehension. The VCI subtests assess an individual’s ability to access and apply acquired word knowledge. The application of this knowledge involves verbal concept formation, reasoning, and expression. The Visual Spatial Index (VSI), which is comprised of two primary subtests, Block Design and Visual Puzzles, assesses an individual’s ability to

of two primary subtests, Block Design and Visual Puzzles, assesses an individual’s ability to evaluate visual details and to understand visual spatial relationships to construct geometric designs from a model. The ability to construct designs requires visual spatial reasoning, integration and synthesis of part–whole relationships, attentiveness to visual detail, and visual-motor integration. The Fluid Reasoning Index (FRI) measures a person’s ability to detect the underlying conceptual

The Fluid Reasoning Index (FRI) measures a person’s ability to detect the underlying conceptual relationships among visual objects and to use reasoning to identify and apply rules. Identification and application of conceptual relationships require inductive and quantitative reasoning, broad visual intelligence, simultaneous processing, and abstract thinking. The FRI is comprised of two primary subtests, Matrix Reasoning and Figure Weights, and two secondary subtests, Picture Concepts and

subtests, Matrix Reasoning and Figure Weights, and two secondary subtests, Picture Concepts and Arithmetic. The Working Memory Index (WMI) assesses the ability to register, maintain, and manipulate visual information through the Picture Span subtest and auditory information through the Digit Span subtest. Letter–Number sequencing is a secondary subtest within the WMI that further assesses working memory through an auditory information task. The last primary index, Processing Speed, measures an

memory through an auditory information task. The last primary index, Processing Speed, measures an individual’s speed and accuracy of visual identification, decision-making, and decision implementation. Performance on the two primary PSI subtests, Coding and Symbol Search, and one secondary subtest, Cancellation, is related to visual scanning, visual discrimination, short-term visual memory, visuomotor coordination, and concentration.

In total, the WISC–V consists of 21 subtests, only ten of which are considered primary subtests and essential to calculating primary index scores. Seven of the ten primary subtests combine to arrive at the Full-Scale IQ (Similarities, Vocabulary, Block Design, Matrix Reasoning, Figure Weights, Digit Span, and Coding). The remaining 11 subtests are considered secondary or complementary. Secondary subtests (Information, Picture Concepts, Letter–Number Sequencing, Cancellation, Comprehension, and

subtests (Information, Picture Concepts, Letter–Number Sequencing, Cancellation, Comprehension, and Arithmetic) can be used as a substitute for a related primary subtest to calculate the Full-Scale IQ. Additionally, secondary subtests are recommended for administration in order to provide more in-depth information about a child’s intellectual functioning and for clinical decision-making, as they make up ancillary index scales. Complementary subtests (Naming Speed Literacy, Naming Speed

as they make up ancillary index scales. Complementary subtests (Naming Speed Literacy, Naming Speed Quantity, Immediate Symbol Translation, Delayed Symbol Translation, and Recognition Symbol Translation) are not designed as measures of intelligence but rather to aid in assessment of cognitive processing associated with academic learning. The Complementary subtests comprise the complementary index scales of Naming Speed, Symbol Translation, and Storage and Retrieval. The WISC–V provides global

scales of Naming Speed, Symbol Translation, and Storage and Retrieval. The WISC–V provides global indicators of cognitive functioning via the Full-Scale IQ, as well as ancillary indices, specifically, the Nonverbal Index, General Ability Index, and Cognitive Proficiency Index. The ancillary indices may be interpreted as a better estimate of a given child’s overall cognitive abilities than the Full-Scale IQ based on the individual’s performance profile. More specifically, when there is an unusually

IQ based on the individual’s performance profile. More specifically, when there is an unusually high amount of variability between subtest scores that comprise the Full-Scale IQ, this Index score is not considered to be a good measure of the child’s global intellectual ability, and it is recommended that other global estimates of cognitive functioning be reported. The Nonverbal Index is a measure of general cognitive ability that minimizes expressive language demands. The General Ability Index is

general cognitive ability that minimizes expressive language demands. The General Ability Index is an estimate of cognitive ability that reduces emphasis on working memory and processing speed, and it is thought to be a more pure representation of crystallized intelligence, which is heavily based on language and previously learned information. Lastly, the Cognitive Proficiency Index is the summary index made up of the four working memory and processing speed subtests, thus providing a global

index made up of the four working memory and processing speed subtests, thus providing a global estimate of a child’s cognitive efficiency for manipulating and rapidly processing information.

Historical Background  Intelligence tests were first developed in the early 1900s to more objectively assess and quantify aspects of disability and mental illness, in addition to qualifications or capabilities of an individual. There are various theories and definitions of intelligence and thus various theories on how to measure cognitive functioning (Sattler 2008). David Wechsler (see Wechsler, David), the creator of the original Wechsler scales that have evolved into the current WISC–V,

David), the creator of the original Wechsler scales that have evolved into the current WISC–V, considered intelligence to be a global factor. He designed his original intelligence scale to consider factors contributing to the effective intelligence of the individual with the overall IQ score representing an index of general mental ability. Thus, from its outset, the Wechsler intelligence scales are rooted in a factor theory of intelligence – espousing to the theory of a general intelligence

are rooted in a factor theory of intelligence – espousing to the theory of a general intelligence that is comprised of multidimensional cognitive abilities. Wechsler developed the Wechsler–Bellevue Intelligence Scale in 1939 for use with adults, and in 1949, the first edition of the Wechsler Intelligence Scale for Children (WISC; Wechsler 1949) was created as a downward extension of the Wechsler–Bellevue scale. The WISC was the first intelligence test created for use in children, specifically

scale. The WISC was the first intelligence test created for use in children, specifically children ages 5 to 15 years old (Sattler 2008). The original scales consisted of 12 subtests, many of which remain on the current version in an updated form. The subtests were organized into Verbal and Performance scales resulting in a Verbal IQ (VIQ), Performance IQ (PIQ), and Full-Scale IQ. In 1974, the first revision was produced, the Wechsler Intelligence Scale for Children–Revised (WISC–R; Wechsler

first revision was produced, the Wechsler Intelligence Scale for Children–Revised (WISC–R; Wechsler 1974). The revision changed the targeted age range for the instrument to 6- to 16-year-old children. After Wechsler’s death in 1982, Psych Corp produced subsequent editions of the WISC and continues to list David Wechsler as the author through the current version.

The third edition (WISC–III; Wechsler 1991) was the first revision to introduce significant content and structure changes to the measure. A new subtest for processing speed was developed for the WISC–III, and the measure was organized into more specific indices of cognitive functioning beyond the overarching composites of VIQ, PIQ, and FSIQ: Verbal Comprehension (VCI), Perceptual Organization (POI), Freedom from Distractibility (FDI), and Processing Speed (PSI). The next revision, WISC–IV, was

Freedom from Distractibility (FDI), and Processing Speed (PSI). The next revision, WISC–IV, was developed in 2003 (Wechsler 2003). The development of the WISC–IV again ushered in major changes to subtest content and structure including updated item content and scoring procedures. The original VIQ, PIQ, and FSIQ were dropped and formally replaced with the specific indices developed on the WISC–III that were revised to reflect the cognitive abilities assessed by the WISC: the Verbal Comprehension

that were revised to reflect the cognitive abilities assessed by the WISC: the Verbal Comprehension Index (VCI); the Perceptual Reasoning Index (PRI), formally named Perceptual Organization; the Working Memory Index (WMI), formerly named the Freedom from Distractibility; and the Processing Speed Index (PSI). The WISC–V is the most recent revision of the WISC. One of the major changes in the new edition is the update to the theoretical foundation of cognitive functioning and intellectual

new edition is the update to the theoretical foundation of cognitive functioning and intellectual assessment through the use of a five-factor model of test structure. The transition from a four- to five-factor model was born from factor analytic research of the WISC–IV and the Wechsler Adult Intelligence Scale–Fourth Edition (WAIS–IV; Wechsler

Writing Disorders  Short Description or Definition Writing is considered to have two basic components: the process and product of writing. Writing processes include “planning (prewriting), organizing, drafting, reflecting, revising, and editing. . .as well as forming letters and sequences of letters into words” (American Speech Language Hearing Association [ASHA] 2001), while the products of writing are the final form of the composition produced as either handwritten or word-processed text.

writing are the final form of the composition produced as either handwritten or word-processed text. Writing involves not only the physical process of forming letters and sequences of letters into words and using appropriate writing mechanics, such as punctuation and capitalization, then, but also consists of the planning, organizing, drafting, reflecting, revising, and editing that leads to the final product (Paul and Norbury 2012; Scott et al. 2009). Children who find writing difficult early in

final product (Paul and Norbury 2012; Scott et al. 2009). Children who find writing difficult early in their education often perform poorly on academic measures as they progress through the grades (Nancollis et al. 2005). Children with speech-language disabilities, including those with ASD, are at risk for writing difficulties (Puranik et al. 2008).

Assessment Writing can be assessed informally, using rubrics to rate the quality of various components of the writing process and product (e.g., Paul and Norbury (2012); Westby and Clauser 2005). In addition, standardized tests are available for the identification of writing disorders. These may be administered by a speech-language pathologist, learning disability specialist, or special educator. They include, for example, the Oral and Written Language Scales (Carrow-Woolfolk 1996), the Test of

They include, for example, the Oral and Written Language Scales (Carrow-Woolfolk 1996), the Test of Adolescent and Adult Language-4 (Hammill et al. 2007), the Test of Written Expression (McGhee et al. 1995), the Test of Written English (Anderson and Thompson 1988), the Test of Written Language-4 (Hammill and Larsen 2009), the Woodcock Language Proficiency Battery-Revised (Woodcock 1991), the Writing Process Test (Warden and Hutchinson 1992), and the Written Language Assessment (Grill and Kerwin

Process Test (Warden and Hutchinson 1992), and the Written Language Assessment (Grill and Kerwin 1990).

Categorization The characteristics of writing disorders, according to Scott et al. (2009), include:

*   Poor planning, monitoring, evaluating, and revising work. Children with writing difficulties have been described as having a “stream of consciousness” writing style (Graham and Harris 1999). Because of this, they demonstrate text-structure problems (with paragraph organization, transitions between paragraphs, and story plots). They often do not recognize and correct errors as they write (Roth 2000) or go back over their writing to correct errors later (Scott 2005).

*   Difficulty with writing mechanics. Graham and Harris (1999) and MacArthur (2000) observe that children with writing difficulties struggle with spelling, capitalization, punctuation, and handwriting. In addition, they often write sentences that are shorter and simpler than those of their peers. They have fewer clauses per sentence, they overuse and to begin sentences, and often omit grammatical word endings, such as -ed (to express past tense).

*   Sparse writing. Children who struggle with writing write less and get less practice writing (Wong 2000). Because of their language deficits, these children often have limited vocabularies and may not know the right word to express their ideas. They may forget the main point, plan, or the structure of their text because they got stuck on the mechanical process of writing. These findings were confirmed by Scott (2005), who found that problems with thinking through and controlling the steps of

by Scott (2005), who found that problems with thinking through and controlling the steps of writing create difficulty in both excluding unimportant material as well as including appropriate information.

*   Ineffective revision. Children with writing difficulties tend to view revising as proofreading. Revisions are typically made at the sentence level, without considering changing content (Roth 2000).
 Epidemiology There are no precise estimates of prevalence for writing disorders, although the National Center for Learning Disabilities estimates that 5% of school-aged children have learning disorders; most who have disabilities in the area of reading will have writing disorders, as well.

Natural History, Prognostic Factors, and Outcomes Natural History: Some children may have difficulty with the physical act of writing, the ability to form letters, as early as the preschool years. This specific deficit in handwriting is often referred to as dysgraphia. For most children, writing problems will be identified in 2–4th grade, when school-sponsored writing and spelling are targeted within the curriculum. These difficulties usually accompany reading problems and executive function

within the curriculum. These difficulties usually accompany reading problems and executive function difficulties and can persist throughout development, into adulthood. However, many adolescents and adults can develop compensatory strategies to that help them cope with their weaknesses and can find careers that allow them to use their strengths for successful adjustment.

Prognostic Factors: Children with reading disorders are at risk for writing disorders, as well.
Outcomes: Although deficits in spelling, handwriting, and composition often persist into adulthood, many adults find ways to be successful in work and life.

Clinical Expression and Pathophysiology No pathophysiological signs have been identified that are specific to developmental writing disorders, although adults with acquired dysgraphia are generally found to have lesions in the parieto-occipital region.

Evaluation and Differential Diagnosis Evaluation and Differential Diagnoses: Writing disorders that are specific to letter formation and handwriting (dysgraphia) need to be distinguished for general motor weakness, spasticity, and incoordination that would affect processes other than writing, such as self-feeding and other hand skills. Since writing disorders almost always occur in conjunction with reading disorders, the two do not require differential diagnosis, but writing ability should

with reading disorders, the two do not require differential diagnosis, but writing ability should always be evaluated in students with reading disorder.

Treatment Intervention Several aspects of writing may be addressed in an intervention program, including:

*   Writing mechanics. Children who have specific difficulties with writing mechanics may demonstrate poor handwriting skills, may fatigue or experience hand cramps quickly when writing, and may be “poor spellers.” If this is the case, the use of assistive technology, such as word processing, can be utilized effectively to reduce fine-motor demands of handwriting (MacArthur 2000). In addition, the spell check function in a word processing program can be helpful for a child who experiences

the spell check function in a word processing program can be helpful for a child who experiences difficulty with writing mechanics and spelling (MacArthur 2000). Working with word prediction software in intervention is also an option for children with problems in writing mechanics. This software predicts a word to type, based on what has been written so far, reducing the stress of both word finding and spelling.

*   Planning and composing. One effective strategy for improving writing process is Self-Regulated Strategy Development (SRSD; Graham et al. 2000). There are six “stages” in the SRSD: (1) develop background knowledge; (2) identify strategy, goals, and significance; (3) modeling of the strategy; (4) memorization of the strategy; (5) collaborative practice; and (6) independent practice. A variety of other strategies are described in Paul and Norbury (2012).

*   Revising. Children with writing disorders may benefit from the use of assistive technology, such as speech synthesis software that allows the computer to read the composition aloud, while highlighting the words being spoken. The student can then use oral language skills to make revisions. Collaborating with classmates or teachers during revision may also be helpful (MacArthur 2000; Wong 2000). Students can be divided into small groups for peer revisions. Each child is instructed to provide,

Students can be divided into small groups for peer revisions. Each child is instructed to provide, for example, two positive comments and two suggestions for improvement for their classmates’ compositions. The students might also ask questions about unclear or underdeveloped aspects of compositions.

*   Visual aids and graphic organizers have also been shown to improve writing. Visual outlines in the form of flow charts and maps (“webs”) can help students organize the writing process (Hyerle 2004). These can be used as a basis for creating a more mature composition. Additional examples of intervention approaches for writing difficulties can be found in Paul and Norbury (2012).

See Also Dysgraphia Learning Disabilities  Writing Interventions for Individuals with Autism Spectrum Disorder  Definition Writing is a means to communicate and express ideas, thoughts, feelings, and information. Writing interventions refer to effective and evidence-based instructional practices used to support individuals in developing varied elements of writing including but not limited to letter formation, handwriting, length of writing, sentence structure, and quality of writing. Writing

formation, handwriting, length of writing, sentence structure, and quality of writing. Writing interventions often target specific genres of writing including but not limited to descriptive writing, expository writing, narrative writing, and persuasive writing.

Historical Background The topic of writing interventions and students with autism spectrum disorder (ASD) was not widely considered prior to the twenty-first century. Preceding the enactment of legislation in the 1970s, students with disabilities were denied access to general education. In 1973, Section 504 of the Rehabilitation Act was signed, mandating the inclusion of individuals with disabilities in all programs that receive federal funding, including public schools. In 1975 the Education

in all programs that receive federal funding, including public schools. In 1975 the Education for All Handicapped Children Act (P.L. 94-142) was signed mandating the rights of students with disabilities to a free and appropriate education in the least restrictive environment. Despite these mandates including students in public education, there was a prevailing assumption that most individuals with ASD would not benefit from instructional time spent on academic skills including writing, and

with ASD would not benefit from instructional time spent on academic skills including writing, and instead the primary focus of education was to address behavioral and life skills. In 1990, P.L. 94-142 was renamed as the Individuals with Disabilities Education Act (IDEA). IDEA was reauthorized in 1997 with an impactful amendment that required students with disabilities to participate in local and state assessments. IDEA was further reauthorized as the Individuals with Disabilities Education

and state assessments. IDEA was further reauthorized as the Individuals with Disabilities Education Improvement Act (IDEIA) in 2004, mandating students with disabilities receive academic instruction founded in scientifically based research. These mandates have brought about increased expectations for the academic performance of students with disabilities and the increasing inclusion of students with disabilities in general education classrooms. This includes access to the general education

with disabilities in general education classrooms. This includes access to the general education curriculum and participation in high-stakes testing for students with ASD in our public schools. Students with ASD, however, have been found to struggle with academic performance, including in the domain of written expression, yet skill in writing is paramount to success in local and state assessments. Moreover, developing skill in functional writing as a communication tool is especially important

Moreover, developing skill in functional writing as a communication tool is especially important for the subset of individuals with autism spectrum disorder (ASD) with limited or unreliable speech. Faced with the mandates of IDEIA (2004), many teachers have found them-selves unprepared to provide instruction that meets the individualized needs of students with ASD as well as prepares them to meet state standards. This established a need for high-quality writing interventions for students with

state standards. This established a need for high-quality writing interventions for students with ASD. Fortunately, there has been increased attention on how to enhance the academic performance of students with ASD in the area of writing.

Current Knowledge Individuals with ASD often experience reduced success in writing, placing them at a disadvantage in communicating their thoughts, fully participat-ing in school, or gaining employment (Pennington and Delano 2012). Specific writing difficulties include using fewer words and making more spelling errors than their neurotypical peers and having weaker overall structure in their writing (Asaro-Saddler 2014, 2016). In a study of the learning profiles of children with high-functioning

(Asaro-Saddler 2014, 2016). In a study of the learning profiles of children with high-functioning autism, Mayes and Calhoun (2008) report that despite strength in visual and verbal reasoning, students with ASD have writing weaknesses, including difficulty with handwriting and with expressing thoughts on paper. Additionally, difficulty with perceptual and visual motor tasks has been found to impact functional handwriting including length, speed, and legibility of writing (Ashburner et al. 2012).

functional handwriting including length, speed, and legibility of writing (Ashburner et al. 2012). Differences in executive functioning and theory of mind (ToM) have frequently been reported to impact the writing of individuals with ASD. Executive functioning differences may result in difficulty generating, planning, and integrating ideas in writing for individuals with ASD, and as a result instructional practices aimed at supporting the planning, organization, and self-monitoring of writing

practices aimed at supporting the planning, organization, and self-monitoring of writing emerge as essential (Delano 2007). Differences in ToM, the ability to consider the thoughts or feelings of others (Baron-Cohen et al. 1985), have been reported as impacting the ability of individuals with ASD to write persua-sively (Asaro-Saddler and Bak 2014) and the quality of both narrative and expository texts (Brown and Klein 2011). More recently, an emphasis on ToM differences as opposed to deficits

texts (Brown and Klein 2011). More recently, an emphasis on ToM differences as opposed to deficits has led to consideration of how ToM variations may also emerge as strengths for individuals with autism (see Atherton et al. 2019). For example, strength in imagination and attention to detail may enrich the narrative story writing of individuals with ASD.

Writing Interventions Numerous interventions have been identified to improve the writing of individuals with ASD. Many of these writing interventions stem from practices identified as evidence-based (EBPs) for instructing students with ASD in a variety of skill areas (see Reichow et al. 2008). Such EBPs include reinforcement, task analysis, prompting, time delay, video modeling, and use of visual supports (National Professional Development Center on ASD 2014). In fact, combining multiple

visual supports (National Professional Development Center on ASD 2014). In fact, combining multiple instructional practices to individualize writing intervention for individuals with ASD has emerged as a common practice with interventions frequently combining visual supports, such as a graphic organizer, along with positive reinforce-ment (Accardo et al. 2019). Reviews of the liter-ature detail writing interventions to support individuals with ASD (see Pennington and Delano 2012; Asaro-Saddler

interventions to support individuals with ASD (see Pennington and Delano 2012; Asaro-Saddler 2014; Accardo et al. 2019). Recommended writing interventions along with examples of implementation follow.

Self-regulated strategy development. Self-regulated strategy development (SRSD) is an instructional package that includes the teaching of academic strategies for writing combined with instruction in self-regulation. Through SRSD, teachers individualize instruction and guide students to use writing strategies while also providing support for student goal setting, self-regulation, and motivation. Instruction includes six stages: (1) developing background informa-tion needed for writing; (2)

Instruction includes six stages: (1) developing background informa-tion needed for writing; (2) discussing the purpose and benefit of the strategy to be used; (3) modeling of the strategy; (4) memorization of the strategy; (5) supporting students in use of the strategy; and (6) independence, evidenced by student generalization of the strategy across a variety of tasks (Santangelo et al. 2008). SRSD is individu-alized with instruction at each stage continuing until student mastery through a

SRSD is individu-alized with instruction at each stage continuing until student mastery through a criterion-based approach.

SRSD has emerged as a highly effective writing intervention for individuals with learning disabilities as well as individuals with ASD. In a study of the use of SRSD with three elementary-age students with ASD, students were taught to use the POW-+ Tree strategy and the WWW, What-2, and How-2 writing strategy, given a choice of writing tasks, a motivational “rocket” chart, and visual supports. All of the students increased the number of story elements used, the holistic quality, and the number

of the students increased the number of story elements used, the holistic quality, and the number of words when writing stories (Asaro-Saddler 2014). Similarly, in a study of SRSD which included choice of writing tasks, self-regulation charts, cue cards, and a com-puter graphic organizer program, all of the stu-dents aged 18–20 increased the quality of argument-driven writing and writing duration (using the strategy DATE + SCORES) and quality appeared to generalize to prompts in a college

(using the strategy DATE + SCORES) and quality appeared to generalize to prompts in a college writing course (Jackson et al. 2018). In a review of the research literature on the effectiveness of SRSD with individual with ASD, Asaro-Saddler (2016) concluded that most students with ASD participating in SRSD instruction increased both the quality and quantity of their writing. In addi-tion, students increased their planning time and their use of self-regulatory strategies. Since many students with

increased their planning time and their use of self-regulatory strategies. Since many students with ASD are reported to have difficulty with executive functioning tasks such as planning, organizing, and self-monitoring, the SRSD method may help these students to organize their thoughts and to check the quality of their writing.

Graphic organizers. The use of visual information during instruction, such as through graphic organizers and pictorial representations, allows students to process information faster and easier. Graphic organizers provide a visual repre-sentation of information to enhance learning. As a component of the SRSD method, graphic orga-nizers have been shown to be part of an effective instructional package for enhancing the writing skills of individuals with ASD. For example, Bishop et al. (2015)

package for enhancing the writing skills of individuals with ASD. For example, Bishop et al. (2015) implemented a graphic orga-nizer package to improve the persuasive writing of three middle school students with ASD. The graphic organizer had spaces for planning – a brainstorming box, three boxes for reasons, a counter-argument box, an introduction box, and a conclusion box. After training with the graphic organizer, all three students improved on all three of the outcome measures – correct

the graphic organizer, all three students improved on all three of the outcome measures – correct writing sequences (defined as “two adjacent writing units that are correct within the context of what is written”), total words written, and a rubric score.

Behavioral Principles Prompting. Instructional methods derived from applied behavior analysis (ABA) are also recommended to enhance the writing of individ-uals with ASD (see “Progressive Applied Behavior Analysis”), often in combination with other instructional methods. One such method is prompting. For example, response prompting was combined with sentence frames to improve the sentence writing of 7–12-year-old students with moderate intellectual disability and ASD (Pennington et al. 2018). A

of 7–12-year-old students with moderate intellectual disability and ASD (Pennington et al. 2018). A sentence frame is a scripted portion of a sentence – for example, “I want ______” – that can be completed by using a targeted written response such as “I want the candy.” During instruction, the teacher presented the student with a preferred item and the sentence frame and prompted the student to respond by saying “Write a sentence to tell me what you want.” If the student failed to respond

to respond by saying “Write a sentence to tell me what you want.” If the student failed to respond within 10 s, the teacher prompted the student using a predetermined prompt hierarchy. If the student responded correcting the teacher provided either p-raise or a tangible reinforcer. Using these pro-cedures, each of the students produced three types of sentences and maintained their responding fol-lowing the intervention.

Task Analysis. Similarly, a task analysis approach can be used to enhance the writing of individuals with ASD. For example, Lee et al. (2016) used a task analysis approach to identify the steps needed to teach three skills: identification of key ideas in a paragraph, identifying supporting details and recording information on a graphic organizer, and composing informational text. Two students with significant intellectual disabilities, one of whom was identified as autis-tic, were instructed on

significant intellectual disabilities, one of whom was identified as autis-tic, were instructed on writing skills using the task analyses as the framework for the instruction. In addition, during instruction teachers used a graphic organizer that consisted of written pro-mpts for each of the three target skills and utilized a least intrusive prompt approach if the student did not respond during the lesson. Following instruc-tion, both of the students made significant improvements on all three

the lesson. Following instruc-tion, both of the students made significant improvements on all three skills.

Reinforcement. Reinforcement of behavior is another ABA method that has frequently been used to teach writing skills. In their review of the research on writing interventions for students with ASD, Pennington and Delano (2012) identified 11 studies in which reinforcement was used. A number of different methods were identified, including the delivery of tokens, a computer-delivered auditory fanfare for correct responding, and a reinforcing video clip. Since student prefer-ences can vary widely,

for correct responding, and a reinforcing video clip. Since student prefer-ences can vary widely, it is important to assess individual student response to reinforcers before choosing a method to use to reinforce student responses to writing tasks.

Assistive Technologies Computer-aided instruction. Assistive technolo-gies, including computer-aided instruction, voice output communication aids (VOCAs), multimedia presentations, and video modeling, have been successfully used to improve the writ-ing of individuals with ASD. Using computer-aided instruction (CAI), Stromer et al. (1996) developed software to teach a student with intel-lectual disability and ASD to improve spelling. The student was presented with a sample word on the computer

and ASD to improve spelling. The student was presented with a sample word on the computer screen which, when touched, disappeared and was replaced by a set of letters. The student could then select the correct letters to spell the target word. When the student responded correctly, the computer lit up with a flashing display, and the student received a token that could be exchanged for a preferred item. The student with ASD was able to suc-cessfully spell words using this method, and spelling

item. The student with ASD was able to suc-cessfully spell words using this method, and spelling improvement was found to generalize to other tasks. Additional studies provide example of how CAI, used in combination with other instructional practices, can be used to teach writing skills to individuals with ASD. Pennington et al. (2014) combined simultaneous prompting, an errorless teaching procedure involving the delivery of a controlling prompt immediately following a dis-criminative stimulus,

involving the delivery of a controlling prompt immediately following a dis-criminative stimulus, with CAI to teach story writing to five students with autism (see Pennington et al. 2010, 2014). Story templates were created using commercially available soft-ware, and the participants were prompted to create a story using words and pictures on the story template. In both studies the researchers found that the combination of simultaneous prompting with computer-aided instruction improved the

found that the combination of simultaneous prompting with computer-aided instruction improved the ability of the students to construct stories. Additionally, students showed evidence of gener-alizing their story construction skills through increased verbal responses.

Voice output communication aids. Assistive technology includes the use of voice output com-munication aids to support the written expression of individuals with ASD. Two studies by Schlosser and colleagues combined the use of a voice output communication aid (Lightwriter 35) with a copy-cover-compare method to teach spell-ing to students with ASD (see Schlosser et al. 1998; Schlosser and Blischak 2004). In the first study, a student with ASD significantly increased correct spelling of words and

2004). In the first study, a student with ASD significantly increased correct spelling of words and maintained the improvement after the intervention was com-pleted. In the follow-up study in 2004, the inves-tigators used a similar copy-cover-compare method to teach spelling combined with the use of three different forms of feedback – speech, print, and speech + print – with four students with ASD. Results were similar to that found in the earlier study in that all of the participants increased

Results were similar to that found in the earlier study in that all of the participants increased their correct spelling. However, only two of the four students were able to generalize their skills to new words. There was no single type of feedback that was superior, but the results sug-gest that some individuals with ASD may respond better to print feedback, while others may prefer feedback in the form of speech.

Video modeling. Video modeling has been found to be an evidence-based practice for improving the learning and behavior of individ-uals with ASD (Wong et al. 2015). When applied to writing instruction, video modeling has been found to enhance essay writing (Delano 2007) and spelling (Kinney et al. 2003; Kagohara et al. 2012). For example, SRSD was delivered via video self-modeling to three young adults with Asperger syndrome (Delano 2007). The young adults participated in making two videos of

adults with Asperger syndrome (Delano 2007). The young adults participated in making two videos of them-selves modeling the use of a strategy – one to increase the number of words written and the other to enhance essay writing. The students watched the video at the beginning of each inter-vention session. Following the interventions, all of the students increased the number of words used in their essay writing and increased the num-ber of functional elements (e.g., premises, rea-sons,

in their essay writing and increased the num-ber of functional elements (e.g., premises, rea-sons, conclusions, and elaborations) in their writing. In other studies video modeling has been used to improve spelling. Kinney et al. (2003) developed video models that showed one of the researchers writing a word in response to a prompt from an off-camera investigator. After writing the word, the first investigator said the word. These videos were subsequently used by the classroom teacher to teach

investigator said the word. These videos were subsequently used by the classroom teacher to teach new words to the student. The researchers reported that the student readily participated in the instructional sessions, learned a large number of new words, and maintained her knowledge of most of the new words over time. Kagohara et al. (2012) sought to increase the use of the spell-check function of two students with ASD through the use of video modeling. Both of the students successfully learned

two students with ASD through the use of video modeling. Both of the students successfully learned to use the spell-checker and continued to use the method after the video modeling interven-tion was discontinued.

Future Directions Studies of writing interventions have clearly established that individuals with ASD can benefit from such instruction. This is true for both those individuals with lower measured cognitive func-tioning and those with IQ scores in the average to higher range. A number of different instructional practices have been found to improve specific writing skills although the most effective approaches often use a combination of methods including self-regulation, strategy instruction,

approaches often use a combination of methods including self-regulation, strategy instruction, graphic organizers, reinforcement, prompting, and technology. Future research should focus on which of these methods is most useful for the improvement of specific skills (e.g., spelling, written expression, planning) and for which sub-set of individuals with ASD (e.g., those with lower measured cognitive ability or those higher cognitive functioning). Additionally, the effectiveness of technology to

ability or those higher cognitive functioning). Additionally, the effectiveness of technology to enhance writing skills has only begun to be explored. The proliferation of technology, in particular speech recognition software and text-to-speech software, has yet to be examined as poten-tial methods for enhancing the written language skills of individuals with ASD. When combined with some of the other evidence-based practices for improving writing skills, the impact of both tech-nology and these

evidence-based practices for improving writing skills, the impact of both tech-nology and these practices can potentially be mul-tiplied. The future of research and practice in enhancing the written language skills of individ-uals with ASD is very promising. The research demonstrates that writing skills can be successfully taught and that individuals with ASD can poten-tially be more successful both in school and in post-secondary education as well as in employment.

See Also Academic Skills Computer-Assisted Instruction to Teach Academic Skills Education Inclusion Progressive Applied Behavior Analysis Video Modeling/Video Self-Modeling  Written Language  Synonyms Written communication  Definition Written language is the written form of communication which includes both reading and writing. Although written language may at first be considered to simply be oral language in its written form, the two are quite different in that oral language rules are innate

language in its written form, the two are quite different in that oral language rules are innate whereas written language is acquired through explicit education. Written language, whether reading or writing, requires basic language abilities. These include phonological processing (understanding that words are made of discrete sounds, then associat-ing letters with these sounds, i.e., decoding), vocabulary, and syntax (grammar). Skilled read-ing and writing further require an awareness of what

vocabulary, and syntax (grammar). Skilled read-ing and writing further require an awareness of what is being read or written in order to construct meaning. Given characteristic and varying difficulties in language in individuals with autism spectrum disorders (ASD), the bidirectional rela-tionship between oral and written language poses challenges to written language development. Further, although reading and writing are based upon the same basic language skills, they are differing forms of

reading and writing are based upon the same basic language skills, they are differing forms of written communication with different levels of cognitive demand; these demands present additional challenges to those with ASD learning to read and write. Specifically, writing is more complex than reading because successful written expression requires adequate executive processes (Hooper 2009), that is, pro-cesses for planning, organizing, translating (thoughts into words), revising, and editing.

is, pro-cesses for planning, organizing, translating (thoughts into words), revising, and editing. Fur-thermore, writing puts greater demands on internal working memory than does reading does (Berninger and Winn 2006). Additionally, written expression requires handwriting skills, “pen to paper.”

See Also Dysgraphia Reading Writing Disorders  Xanax (Alprazolam)  Synonyms Alprazolam; Benzodiazepine  Definition Xanax, the brand name of Alprazolam, is a member of the benzodiazepine (BZD) family, a cate-gory of drugs commonly prescribed for conditions such as insomnia, anxiety, agitation, muscle spas-ticity, and epilepsy. Xanax is classified as a high-potency benzodiazepine and is known to have a short-lasting anxiolytic effect, meaning the drug reduces anxiety and has a half-life of

to have a short-lasting anxiolytic effect, meaning the drug reduces anxiety and has a half-life of approximately 6–27 h half life; it is consequently often prescribed for panic disorder and anxiety-related disorders, such as generalized anxiety dis-order (GAD) and obsessive compulsive disorder (OCD). To treat anxiety, Xanax is most commonly taken by mouth in 0.25–0.5 mg tablets up to three times per day. For panic disorder, it is recommended the drug be taken at a maximum of 6–10 mg per day.

Concerning the mechanism of action, Xanax binds to GABA-A receptors, ion channels that have an affinity towards chloride. When the com-pound binds at two transected subunits of the complex, it in turn alters the shape of the complex’s chloride channels and allows GABA to bind. GABA, a common inhibitory neurotrans-mitter, is known to interfere with brain activity and the connectivity of brain structures, therapeu-tically resulting in sedation and relaxation of the body. Furthermore, when Xanax

therapeu-tically resulting in sedation and relaxation of the body. Furthermore, when Xanax binds to subunits of the GABA-A receptor complex, specific iso-forms of those subunits regulate the effects of sedation, antianxiety, hypnosis, and amnesia. Because of its fast-acting properties, Xanax can provide more immediate relief for individuals with anxiety, compared the use of SSRIs or buspirone. Yet the administration of Xanax may also result in impairments in executive function-ing, affecting the

the administration of Xanax may also result in impairments in executive function-ing, affecting the patient’s alertness, diligence, and decision-making. Because of the drug’s high potency and high lipid solubility, the possibility of memory deficits, such as anterograde amnesia and impairments in delayed recall, are risk factors.

Rebound anxiety is also a possible side effect when withdrawing from Xanax, which results in a worse return of the original symptoms. Rebound anxiety is more often to occur with a benzodiaze-pine like Xanax, because of its shorter elimination half-life compared to other BZDs, such as diaze-pam. In addition to rebound, the fast-acting, short-lived properties of Xanax also expose the patient to risks of withdrawal symptoms and dependence. In terms of Xanax and its relation to autism,

to risks of withdrawal symptoms and dependence. In terms of Xanax and its relation to autism, anxiety-related disorders are a common comor-bidity of autism spectrum disorders (ASD). Multiple classes of drugs, such as antidepressants, stimulants, anticonvulsants, and antipsychotics are used by youth with ASD to treat comorbid or related diagnoses. Compared to the above classes, benzodiazepines appear to be less commonly used within the community. It is important to note that while

appear to be less commonly used within the community. It is important to note that while benzodiazepines are sometimes taken to directly treat a related diagnosis such as anxiety disorder or epilepsy, they are not prescribed to treat the core symptoms of ASD.

Additionally, there is some recent evidence that suggests that the GABA system may be involved with the pathophysiology of ASD. Several mouse models have shown a reduction in GABAergic interneurons, thus maintaining an imbalance of excitation and inhibition in the brain. This imbalance is thought to be associated with the characteristics of the autism phenotype.

See Also Anxiolytic Drugs Lorazepam  X-Linked Traits  Definition The traits of an organism are its characteristics. These can be normal characteristics such as stature and eye color or abnormal or disease charac-teristics, such as blindness or the symptoms of autism. Traits are influenced by two main factors – the environment and an organism’s genetic mate-rial, the biological instructions for the develop-ment and functioning of a living organism. These instructions are contained in a molecule

develop-ment and functioning of a living organism. These instructions are contained in a molecule called deoxyribonucleic acid (DNA). The instruc-tions are spelled out in a sequence or code of four chemical units called nucleobases (or bases). This molecule is contained within nearly every cell of an organism, cells being the building blocks of organisms. Certain segments of the DNA molecule called genes contain the code for creat-ing the components of cells, most importantly, molecules called

genes contain the code for creat-ing the components of cells, most importantly, molecules called proteins.

DNA is passed from one generation to the next. In humans, the DNA is not comprised of a single long molecule but rather is divided up into a set of smaller pieces that correspond to structures called chromosomes, which contain both a single long DNA molecule and proteins. By definition, cells of males contain a chromosome X and a chromo-some Y while cells of females contain two of chro-mosome X. The X and Y chromosomes are referred to as the sex chromosomes. Each parent passes one of his or her

X and Y chromosomes are referred to as the sex chromosomes. Each parent passes one of his or her sex chromosomes to each offspring. By definition, male offspring can inherit their X chromosome only from their mothers (as the father’s Y chromosome is necessary for the creation of male offspring), while female offspring inherit one X chromosome from each parent. Sex chromosomes stand in contrast to the other human chromosomes that are called autosomes. Autosomes are paired in an individual so that

other human chromosomes that are called autosomes. Autosomes are paired in an individual so that each carries two of chromosome 1, for example. One member of the pair is inherited from the individ-ual’s father and the other from the mother.

Traits that result from the sequence of DNA on the X chromosome are called X-linked traits. Rare variations in the DNA sequence are sometimes called mutations. When mutations in the genes on the X chromosome lead to disease, the disease itself is referred to as an X-linked disease. Color blindness is an example of such a disease. Fragile X syndrome, an intellectual disability syndrome that is associated with an increased risk for autism, is another example of an X-linked disease. In autosomes,

with an increased risk for autism, is another example of an X-linked disease. In autosomes, mutations in a gene on a single chromosome of a pair can lead to a disease or contribute to disease risk. In the most dramatic case in which a single variation or mutation pre-sent on only one of the two chromosomes in a pair leads to a phenotype, this is called a dominant mutation. However, in some cases, a mutation in a gene on one chromosome of a pair will not be sufficient to result in disease because

a mutation in a gene on one chromosome of a pair will not be sufficient to result in disease because a non-mutated copy of the gene that exists on the other chromosome compensates. Only when mutations in the gene occur on both chromosomes in a pair will the disease occur. These are called recessive mutations. In autosomes, these rules by and large do not vary on the basis of the sex of an individual.

X-linked mutations can be dominant and reces-sive as well. However, since not all the genes on chromosome X are represented on chromosome Y, the inheritance pattern of X-linked dominant and recessive mutations differs from that of anal-ogous mutations on autosomes. In males, an X-linked recessive disease muta-tion will result in disease because there is not an additional nonmutated X chromosome to com-pensate. In females, however, such a mutation would only result in disease if the other

to com-pensate. In females, however, such a mutation would only result in disease if the other chromo-some X also had a disease mutation in the gene in question. If the gene on only one of a female’s X chromosomes was mutated, then the non-mutated X chromosome would compensate, and the individual female would not be affected by the disease. Such females would be called “carriers” of the disease since they carry a disease gene but do not manifest the disease. In X-linked recessive disorders, a

since they carry a disease gene but do not manifest the disease. In X-linked recessive disorders, a common pattern of inheritance within families, therefore, is as follows. The disease is seen to be passed from apparently healthy mothers who are carriers to their sons but not to their daughters.

In X-linked dominant diseases, a mutation on only one copy of chromosome X is sufficient to result in disease. Thus, even females with one mutated X chromosome and one nonmutated one will have the disease. The inheritance pattern commonly seen in X-linked dominant disorders depends on which par-ent carries the mutated chromosome X. If of the parents, only the father has the mutated chromo-some, he will pass the disease to all of his daughters and none of his sons since he passes only

he will pass the disease to all of his daughters and none of his sons since he passes only chromo-some Y to his sons. If of the parents, only the mother has the mutated chromosome, she will pass the disease in equal proportion to daughters and sons.

It is important to note that this nomenclature evolved in reference to so-called Mendelian inher-itance. These are cases in which there is a highly reliable relationship between the presence of a dominant, recessive, or X-linked mutation and the presence of a disorder or disease. Autism is thought, in contrast, to be a complex genetic dis-order in which many different variations do not cause but rather contribute to the risk for the emergence of the phenotype. These variations, while not as

rather contribute to the risk for the emergence of the phenotype. These variations, while not as predictive as those found in Mende-lian disorders, may also show dominant, reces-sive, or X-linked effects. As noted, there are also examples of genetic syndromes, such as Fragile X, that are associated with an increased rate of ASD. Finally, there have also been rare cases of genes contributing to “nonsyndromic” autism showing Mendelian inheritance, including X-linked inheritance.

See Also DNA Genetics Recessive Genes Variable Expressivity of Genes  Yale Global Tic Severity Scale  Synonyms YGTSS  Definition Yale Global Tic Severity Scale: The YGTSS is a commonly used measure to document the severity of motor and phonic tics. It is performed by a clinician interview. The clinician reviews a list of possible tics that may have occurred over the past week, first motor and then vocal tics. Once the tics that have occurred over the past week are established, the interviewer

vocal tics. Once the tics that have occurred over the past week are established, the interviewer goes on to ask about the frequency of the tics, the intensity or forceful-ness of the tics, the complexity of the tics, and the extent to which the tics are directly interfering in the person’s daily life. These dimensions are rated for both motor and phonic tics. The combined total is often used as a measure for overall tic severity. The YGTSS also includes an overall impairment scale rated from 0

measure for overall tic severity. The YGTSS also includes an overall impairment scale rated from 0 to 50. A score of 0 would indicate that the presence of Tourette syndrome has no negative impact on a person’s life. By contrast, a score of 50 would indicate marked interference and disability associated with the presence of Tourette syndrome. The over-all impairment caused by Tourette syndrome may not be completely driven by the tic severity. Some individuals with mild tics may be deeply

may not be completely driven by the tic severity. Some individuals with mild tics may be deeply troubled and embarrassed by the tics. By contrast, some individuals with marked tics seem to proceed with life without too much difficulty.

See Also Tics Tourette’s Syndrome  Yale In Vivo Pragmatic Protocol  Synonyms YiPP  Description The Yale in vivo Pragmatic Protocol is an assess-ment tool that measures pragmatic language through a semi-structured conversational task in verbal children aged 9–17. It contains a series of predetermined probes to collect information on a variety of conversational speech acts. Within this 30–40-min conversation, the examiner inserts 23 pragmatic probes within five conversational domains (discourse

conversation, the examiner inserts 23 pragmatic probes within five conversational domains (discourse management, communicative function, conversational repair, presupposition, register variation). If the child produces a prag-matic language behavior in response to the probe, the conversation continues and the next probe is administered. If the child does not respond to the probe, the examiner systematically provides a series of prompts to determine whether or not these prompts are helpful in the

provides a series of prompts to determine whether or not these prompts are helpful in the production of the pragmatic behavior.

Historical Background The YiPP was developed by Dr. Rhea Paul and piloted at the Yale Child Study Center.
 Psychometric Data This measure is not standardized but yields qual-itative information on pragmatic language skills. Norm-reference to a group of typically develop-ing age-mates is provided.

Clinical Uses This assessment provides a naturalistic means to assess pragmatic language difficulties commonly seen in children with autism spectrum disorders. Due to the probes used in this assessment, it re-quires the child to speak in full sentences. Thus, this evaluation is best suited for higher functioning children on the autism spectrum. It yields qualita-tive information in five domains of pragmatic lan-guage. The information derived from this tool can be useful for intervention

of pragmatic lan-guage. The information derived from this tool can be useful for intervention programming.

See Also Conversational Manner Discourse Management Pragmatic Communication  Yeast Infection  Definition Various types of yeast can cause infection in dif-ferent parts of the body. The most common cause of yeast infection is Candida albicans. It can be oral thrush or with vaginitis. Males can also exhibit genital infection. At times, yeast infection can be systemic and potentially very serious (usually this occurs when the individual has some other condition that compromises the immune system,

this occurs when the individual has some other condition that compromises the immune system, e.g., AIDS). On the skin surface or oral mucosa, yeast infection causes inflation inflammation. Yeast is diagnosed based on micro-scopic examination and search for characteristic yeast organisms. A range of antifungal drugs is used to treat yeast infection. These can be topical or systemic. In addition to the medically accepted yeast infections (noted above), others have proposed that “subclinical” yeast

medically accepted yeast infections (noted above), others have proposed that “subclinical” yeast infection can cause a wide range of problems and can be treated by a special diet. The notion behind this diet is that yeast infection, sometimes acquired at the time of vaginal birth, causes autism. The diet consists of having children avoid food that contains yeast or fermented foods, perhaps combined with medications used in treatment of yeast infec-tions. Although dramatic claims have been made,

with medications used in treatment of yeast infec-tions. Although dramatic claims have been made, the treatment is unproven. (Smith et al. 2014). Clearly systematic data on this intervention cannot be regarded as having a solid evidence base. Despite this many parents wish to pursue this (or other complementary/alternative) treat-ment options. Typically dietary interventions focused on yeast advise parents to avoid foods for the child that contain yeast (baked goods) or which are fermented (soy

parents to avoid foods for the child that contain yeast (baked goods) or which are fermented (soy sauce) or aged (cheeses). Sugar is also to be avoided. Occasionally parents will wish to pursue long-term anti-fungal treatments – again with no clear evidence of yeast infection. As noted above, although dramatic claims have been made for these treatments, substantive scientific data are lacking, and the hypothesis of “yeast overgrowth” in children with autism has no scientific basis. Helping

and the hypothesis of “yeast overgrowth” in children with autism has no scientific basis. Helping parents make informed treatment deci-sions is an important aspect of medical care in autism.

Z Scores  Synonyms Standard score  Definition The Z score (or standard score) is a standardized way to convert raw scores into values expressed in terms of standard deviation units. It is calculated by taking a raw score and subtracting the mean score, then dividing the result by the standard deviation. (The mean score and standard deviation used in the calculation are specific to the popula-tion or test from which the raw score is obtained). Z ¼ rawscore   meanscore ð Þ=standarddeviation A Z

or test from which the raw score is obtained). Z ¼ rawscore   meanscore ð Þ=standarddeviation A Z score of 1.0 indicates that the raw score was 1 standard deviation above the mean. A Z score of -1.0 indicates that the raw score was 1 standard deviation below the mean.

See Also Standard Deviation (SD)  Zebrafish Models  Definition In recent years, large-scale human genetics studies have led to considerable advances in our understanding of the biology of autism spectrum disorders (ASD). In particular, these studies have resulted in the identification of a growing list of ASD risk genes that are beginning to converge on common biological mechanisms (De Rubeis et al. 2014; Iossifov et al. 2014; Sanders et al. 2015). At the same time, scientists now face the

et al. 2014; Iossifov et al. 2014; Sanders et al. 2015). At the same time, scientists now face the challenge of leveraging these genetic findings to elucidate the neural circuit mecha-nisms underlying ASD and to identify novel phar-macotherapies that selectively target these mechanisms. Here, scientists have utilized model systems to advance from risk gene discovery to the elucidation of basic neurobiological mecha-nisms. These systems include mouse “knockout” models, in which the function of a

mecha-nisms. These systems include mouse “knockout” models, in which the function of a particular risk gene is disrupted, as well as human induced plu-ripotent stem cells (iPSCs), which are generated from the cells of an affected individual carrying a mutation in a specific risk gene. More recently, there is growing interest in the use of zebrafish as a system for the functional analysis of risk genes in ASD. There are several unique features of the zebrafish that make it an optimal system for

genes in ASD. There are several unique features of the zebrafish that make it an optimal system for this purpose. First, zebrafish embryos undergo rapid external development and are optically transpar-ent, allowing for direct visualization of basic pro-cesses of vertebrate brain development at early stages. Second, zebrafish have large progenies and their larvae are small and highly tractable in the laboratory. These features facilitate their use in high-throughput pharmacological screens, which

laboratory. These features facilitate their use in high-throughput pharmacological screens, which are not possible in rodents, given their greater size and complexity. Third, zebrafish provide an in vivo system for investigating the effect of risk gene disruption on the neural circuitry underlying simple, quantifiable behaviors, which is a notable limitation of in vitro methods, including human iPSCs. Finally, recent advances in technologies that allow scientists to target genes of interest in

Finally, recent advances in technologies that allow scientists to target genes of interest in zebrafish, together with the inherent ease of genetic manipulation in this system, have contrib-uted to its growing popularity as a tool for the functional analysis of ASD risk genes. As the list of genes that are strongly associated with ASD continues to grow, zebrafish are likely to emerge as a key player in the identification of convergent biological pathways involving multiple genes and the discovery

in the identification of convergent biological pathways involving multiple genes and the discovery of novel pharmacological candi-dates for further investigation in ASD.

Historical Background Until recently, the major limitation of the use of zebrafish for the functional analysis of risk genes in ASD and other neurodevelopmental disorders was the lack of efficient methods for selectively disrupting a gene of interest. While mouse “knockouts” were generated by isolating stem cells, such an approach was not feasible in zebrafish due to their rapid embryonic develop-ment. Indeed, it was only within the past 10 years that the technology for generating zebrafish

Indeed, it was only within the past 10 years that the technology for generating zebrafish lacking the function of a specific risk gene became widely available. For this reason, early studies of zebrafish primarily relied on forward genetics approaches (Granato and Nusslein-Volhard 1996), in which scientists search for an unidentified gene that when disrupted leads to an observed structural or behavioral phenotype. In particular, a large-scale screen in the mid-1990s was a tour de force that

behavioral phenotype. In particular, a large-scale screen in the mid-1990s was a tour de force that established zebrafish as a valuable system for studying basic mechanisms in genetics and developmental biology. This series of studies, in which zebrafish carrying randomly induced mutations were assessed for a range of morphological and behavioral phenotypes, led to the discovery of hundreds of genes involved in fundamental processes of vertebrate development, including axon pathfinding and

of genes involved in fundamental processes of vertebrate development, including axon pathfinding and locomotion (Baier et al. 1996; Granato et al. 1996; Karlstrom et al. 1996). However, the ability to target a gene associated with a human disorder in zebrafish remained limited. For example, early reverse genetics approaches in zebrafish, such as TILLING (Targeted Induced Local Lesions in Genomes), required screening thousands of zebrafish carrying chemically induced mutations to identify a

required screening thousands of zebrafish carrying chemically induced mutations to identify a deleterious mutation in a gene of interest (Moens et al. 2008). Another approach to study gene function in zebrafish that is relatively simple to perform in the laboratory is the use of morpholinos, which are sequences of nucleotides that are introduced into zebrafish embryos and transiently reduce the expression of a gene of interest during early developmental stages. While this “knockdown” approach has

of a gene of interest during early developmental stages. While this “knockdown” approach has contributed insights into the role of genes in basic develop-mental processes, drawbacks include its potential for inducing off-target effects and non-specific phenotypes (Kok et al. 2015).

For this reason, scientists have argued that it is important to exam-ine the developmental effects of gene disruption in zebrafish carrying deleterious, heritable mutations in a gene of interest in conjunction with pheno-types resulting from morpholino-induced gene “knockdown” (Kok et al. 2015). In the late 2000s, the introduction of targeted nuclease technology transformed reverse genetics studies in zebrafish, enabling researchers to selec-tively induce heritable mutations in a gene of

studies in zebrafish, enabling researchers to selec-tively induce heritable mutations in a gene of interest (Doyon et al. 2008; Meng et al. 2008). This technology expanded the range of experi-mental possibilities in zebrafish, allowing researchers to capitalize fully on the advantages of this system for the functional analysis of genes associated with human disorders, including ASD and other neurodevelopmental disorders. Zinc fin-ger nucleases, which are chimeric fusion proteins designed to bind

disorders. Zinc fin-ger nucleases, which are chimeric fusion proteins designed to bind to a gene of interest and disrupt the gene at the target site, were the first available tools. However, this approach was cost-prohibitive and, in some cases, characterized by low efficiencies. More recently, the advent of CRISPR (clustered regularly interspaced short palindromic repeats)/Cas9 technology, which hijacks an adaptive immune mechanism used by bacteria for protection against viruses to allow

which hijacks an adaptive immune mechanism used by bacteria for protection against viruses to allow scientists to target genes of interest (Jinek et al. 2012), has revolutionized gene editing in zebrafish as well as other model systems. Com-pared to earlier gene targeting methods in zebrafish, CRISPR/Cas9 offers superior flexibility and efficiency (Hwang et al. 2013). Given these advantages, along with their reasonable cost, this method has allowed scientists to harness the full potential of

with their reasonable cost, this method has allowed scientists to harness the full potential of zebrafish for the functional analysis of ASD risk genes, which has the potential in the next several years to lead to important insights into the biology of ASD.

Current Knowledge Despite the obvious evolutionary distance between zebrafish and humans, it is important to observe that there is a reasonable degree of con-servation between the two systems at the genetic, molecular, and pharmacological levels. First, zebrafish are vertebrates and share the same major brain subdivisions as humans, including the forebrain, midbrain, hindbrain, and spinal cord (Guo 2009). Neurotransmitter systems and neural cell types are also largely conserved. Sec-ond, there

2009). Neurotransmitter systems and neural cell types are also largely conserved. Sec-ond, there is evidence for conservation of phar-macological pathways in zebrafish and other vertebrates, based on similarities in their behav-ioral responses to psychoactive agents (Guo 2009; Rihel et al. 2010). Third, there is conservation at the genomic level, such that over 80% of genes associated with human disorders have an ortho-logous gene in zebrafish (McCammon and Sive 2015). Given the advantages of the

have an ortho-logous gene in zebrafish (McCammon and Sive 2015). Given the advantages of the zebrafish sys-tem, as discussed above, zebrafish represent a reasonable “balance” between experimental manipulability on the one hand and conservation on the other (McCammon and Sive 2015). Taken together, the relative conservation of zebrafish at the level of central nervous system structure, genetics, and pharmacological pathways provides support for its use as a translational tool for inves-tigating the

pathways provides support for its use as a translational tool for inves-tigating the function of genes that are strongly associated with ASD in basic neurodevelopmental processes.

At the same time, there are limits to translating findings from zebrafish or any animal system to human disorders. First, there are notable anatom-ical differences between zebrafish and human brains, including the lack of a neocortex, which is present in mice and clearly limits the translation of findings from zebrafish to humans (Guo 2009; McCammon and Sive 2015). Second, there is less conservation between genes in zebrafish com-pared to mammalian systems, which may compli-cate the ability to

between genes in zebrafish com-pared to mammalian systems, which may compli-cate the ability to identify the orthologs of human genes in zebrafish (McCammon and Sive 2015). Third, it is impossible for any animal system to recapitulate the complex range of clinical features in ASD or any neuropsychiatric disorder. For this reason, it is important to emphasize that the goal of studying zebrafish is to leverage the unique advantages of this relatively simple system to analyze the function of ASD risk

leverage the unique advantages of this relatively simple system to analyze the function of ASD risk genes in basic neurodevelopmental processes.

A number of studies have capitalized on the advantages of zebrafish to investigate the role of ASD risk genes in nervous system development, with many of these studies employing a morpholino-based approach, as described above, to reduce the expression of genes of interest. For example, Kozol et al. (2015) knocked down two ASD-associated genes, SYNGAP1 (Synaptic Ras GTPase Activating Protein 1) and SHANK3 (SH3 and Multiple Ankyrin Repeat Domains 3), in zebrafish, and found that reduced expression

SHANK3 (SH3 and Multiple Ankyrin Repeat Domains 3), in zebrafish, and found that reduced expression was associated with abnormal swimming and escape behaviors, as well as developmental delay and microcephaly. In addition, Blaker-Lee et al. (2012) studied the effect in zebrafish embryos of reducing the expression of 22 genes found in the region of human 16p11.2. Copy number variants in this region are strongly asso-ciated with ASD and other neuropsychiatric dis-orders, including schizophrenia and

strongly asso-ciated with ASD and other neuropsychiatric dis-orders, including schizophrenia and intellectual disability, yet the contribution of individual genes in the region to ASD is poorly understood. By performing a series of morphological and behavioral assays, the authors found that the reduced expression of many of these genes led to brain and behavioral abnormalities, such as decreased brain ventricle size, abnormal midbrain structure, or alterations in spontaneous movement and touch

brain ventricle size, abnormal midbrain structure, or alterations in spontaneous movement and touch response (Blaker-Lee et al. 2012). Another zebrafish study found that reduced expression and overexpression of one of the genes in this region led to macrocephaly and microcephaly, respectively, suggesting dose-dependent effects (Golzio et al. 2012). At the same time, it is important to observe that morpholinos are limited by their potential for inducing off-target effects, such that there is

that morpholinos are limited by their potential for inducing off-target effects, such that there is grow-ing emphasis on confirming phenotypes resulting from gene knockdown in mutants, where gene function is permanently disrupted (Kok et al. 2015). With the advent of CRISPR/Cas9 technology, this goal is becoming increasingly feasible.

Recent studies have also capitalized on the large progenies of zebrafish and the small size of their embryos and larvae to develop quantitative simple behavioral assays for conducting high-throughput pharmacological screens. For exam-ple, Rihel et al. (2010) tracked the locomotor activity of zebrafish larvae automatically on a light-dark cycle in response to hundreds of psy-choactive compounds to analyze the effects of these drugs on their rest-wake cycle behaviors. Intriguingly, this study

to analyze the effects of these drugs on their rest-wake cycle behaviors. Intriguingly, this study demonstrated that psycho-active compounds could be correctly classified by their mechanism of action based solely on the readout of their behavioral effects in zebrafish larvae. In addition, Kokel et al. (2010) screened thousands of compounds for their effects on the photomotor response, a characteristic motor response exhibited by zebrafish embryos follow-ing exposure to a light stimulus, and found

motor response exhibited by zebrafish embryos follow-ing exposure to a light stimulus, and found that their behavioral responses could be used to cor-rectly categorize novel psychotropic compounds. These studies reveal the potential of large-scale screens of simple behavioral responses in zebrafish to uncover pharmacological mecha-nisms. In a recent study, Hoffman et al. (2016) utilized this automated behavioral profiling approach to analyze the locomotor activity of zebrafish carrying deleterious

behavioral profiling approach to analyze the locomotor activity of zebrafish carrying deleterious mutations in the ASD risk gene, CNTNAP2 (Contactin Associated Protein-like 2). This study found that these zebrafish mutants displayed deficits in inhibitory neurons, had increased sensitivity to drug-induced seizures, and were hyperactive at night. By com-paring the abnormal behavioral profile of mutants to the known effects of over 500 compounds in control fish (Rihel et al. 2010), this study found

to the known effects of over 500 compounds in control fish (Rihel et al. 2010), this study found that estrogenic compounds, including the plant-derived estrogen, biochanin A, were able to selec-tively rescue the abnormal behavioral phenotype in mutants, identifying a novel pharmacological path-way not previously associated with CNTNAP2 (Hoffman et al. 2016). In another study, Baraban et al. (2013) conducted a large-scale drug screen to identify compounds that suppress spontaneous seizure-like

conducted a large-scale drug screen to identify compounds that suppress spontaneous seizure-like behaviors in zebrafish carrying a loss-of-function mutation in a gene that is closely related to SCN1A (Sodium Voltage-Gated Channel Alpha Subunit 1), which is associated with a rare syndrome of intractable epilepsy called Dravet syn-drome. Of the 320 compounds tested, the authors identified a single compound, clemizole, which could reverse abnormal seizure-associated behav-iors and

a single compound, clemizole, which could reverse abnormal seizure-associated behav-iors and electrophysiological abnormalities in mutants (Baraban et al. 2013). These studies high-light the potential of the zebrafish system as a first-pass screening approach to identify novel pharma-cological candidates with relevance to ASD and other neurodevelopmental disorders for further investigation in mammalian systems.

Future Directions There are a number of emerging technologies that are likely in the next several years to expand the repertoire of questions that scientists can address using the zebrafish system. First, genetically encoded fluorescent calcium indicators are allo-wing scientists to image the activity of individual cells throughout the brain of a live larval zebrafish at high resolution, which is possible given their transparent heads. These live imaging assays are increasingly being used to

is possible given their transparent heads. These live imaging assays are increasingly being used to study the neural cir-cuitry underlying simple behavioral tasks, such as the optomotor response and prey capture (Filosa et al. 2016; Muto et al. 2013; Portugues et al. 2015). By visualizing brain activity in zebrafish lacking the function of ASD risk genes, scientists can begin to explore how the disruption of these genes leads to abnormalities in specific neural circuits. Second, the advent of

disruption of these genes leads to abnormalities in specific neural circuits. Second, the advent of CRISPR/Cas9 gene-editing technologies is facili-tating the targeting of multiple ASD risk genes in zebrafish, providing scientists with the opportu-nity to leverage this approach to investigate the effect of multiple ASD risk genes on brain devel-opment simultaneously. Third, high-throughput, automated pharmacological screens based on sim-ple larval behaviors, as described above, have the potential

pharmacological screens based on sim-ple larval behaviors, as described above, have the potential to serve as an important first-pass screen-ing tool to uncover neurochemical pathways that are disrupted due to loss of ASD risk genes and novel pharmacological candidates for further evaluation in mammalian systems. Therefore, the zebrafish system holds considerable translational promise, in conjunction with mouse and cell culture models, to advance our understanding of neurobiological mechanisms in

with mouse and cell culture models, to advance our understanding of neurobiological mechanisms in ASD. Taken together, given the unique features of this system, the zebrafish has the potential to emerge as a key contributor to the functional analysis of ASD risk genes and the elucidation of convergent biological and pharmacological mechanisms in ASD.

See Also Animal Models Candidate Genes in Autism Genetics Neuroscience Recessive Genes  Zero Reject  Definition The term zero reject refers to the requirement that an individual with a disability recognized by the Individuals with Disabilities Education Act (IDEA) cannot be denied access to special educa-tion and necessary related services in the United States. This explicitly implies that a local educa-tion agency (LEA) must make an affirmative effort to determine eligibility for special

a local educa-tion agency (LEA) must make an affirmative effort to determine eligibility for special education services, develop a free and appropriate individu-alized educational plan, implement that plan in the least restrictive environment, and demonstrate that the plan is effectively addressing the educa-tional needs of a student with a disability. The LEA does not have the right to refuse (reject) determination of need, or provision of services, under federal law.

See Also Individuals with Disabilities Education Act (IDEA)  Ziprasidone  Synonyms Geodon  Definition Ziprasidone is atypical antipsychotic medication that has been on the marketplace since early in the 2000s. It is distinguished from others of the class in that it appears to be less likely to cause weight gain. There are a few studies that have examined the benefits of ziprasidone in children or adults with autism, so information on dose and effective-ness is incomplete. Although rare, a

or adults with autism, so information on dose and effective-ness is incomplete. Although rare, a drawback of ziprasidone is that it has a potential for affecting electrical signals in the heart. Most clinicians do not consider it as a first-line treatment because of this concern.

See Also Antipsychotics: Drugs  Zolpidem  Synonyms Ambien; Gamma-aminobutyric agonist  Definition Despite its high prevalence, few pharmacological treatments outside antihistamines and melatonin exist for sleep disorders among pediatric populations (Chevreuil et al. 2010). Few clinical trials have examined whether benzodiazepines, such as Zolpidem, may benefit autistic spectrum disorder (ASD) children with sleep disorders (Chevreuil et al. 2010). A recent case report sug-gests Zolpidem was

children with sleep disorders (Chevreuil et al. 2010). A recent case report sug-gests Zolpidem was effective in reducing cata-tonic behavior in an adolescent with ASD (Zaw and Bates 1997). However, murine models sug-gest zolpidem exacerbates social and cognitive deficits observed in ASD children (Banerjee et al. 2012; Han et al. 2014). Further clinical trials are required to elucidate the mechanism, thera-peutic use, and side effects of Zolpidem among ASD children with sleep disorders.

See Also Gabapentin Midazolam Zyprexa  Zone of Proximal Development (ZPD)  Definition A concept developed by the Russian psycholo-gist Lev Vygotsky (1896–1934) to describe the point where a child (or adult) is most able to learn, i.e., just past the point at which a skill/ task/activity has been mastered but not so diffi-cult as to be impossible for the child to learn. From the educator’s point of view, this suggests giving the child materials/tasks that are carefully selected to enable the

of view, this suggests giving the child materials/tasks that are carefully selected to enable the child to advance without overwhelming them. Put another way, this notion refers to tasks that the child is capable of learning and performing (often initially with guidance) before these become fully indepen-dent activities. High interest in the topic was based on his awareness that for most children certain activities (e.g., language learning) were more effortless than work in other areas (e.g.,

certain activities (e.g., language learning) were more effortless than work in other areas (e.g., mathematics). His work also reflected an aware-ness of distinguishing between development and teaching and has implications for theories like those of Jean Piaget on cognitive development. In Vygotsky’s view, a middle ground was needed between self-directed learning and explicit educational instruction. For him a good teacher was one who directed teaching at the child’s specific level of ability. His

For him a good teacher was one who directed teaching at the child’s specific level of ability. His death at a young age meant that he did not fully develop the concept.

The concept of the zone of proximal devel-opment prefigures in important ways certain current approaches to treatment and intervention (e.g., in learning difficulties). Other approaches, e.g., Maria Montessori’s teaching methods, sim-ilarly attempt to match activities with skills that are emerging for the individual child. Other theorists have referred to these concepts in slightly different ways, e.g., J. McV. Hunt (1961) referred to the “problem of the match,” that is of being aware of exactly

e.g., J. McV. Hunt (1961) referred to the “problem of the match,” that is of being aware of exactly where the child was developmentally and providing a slightly more challenging task. The notion has also been viewed as an important aspect of scaffold-ing helping the child learn from peers as well as teachers. In this process, the teacher or a knowl-edgeable peer help a student who is just at his or her zone of proximal development to learning a more challenging task. Clearly an awareness of

or her zone of proximal development to learning a more challenging task. Clearly an awareness of where the child is actually at is critical in this regard. The concept has been extensively used in educational settings. It has implications not only for teacher-directed learning but the assis-tance of peers as well.

The social context of children’s learning is important given the usual indication of the child to learn by imitation, and this imitation and ability to learn socially provides an important tool for learning. Thus by teaching children at a level slightly above current skill levels, parents and teachers help them expand their abilities. The concept applies not only to more straight-forward school-related tasks but other complex activities, e.g., riding a bicycle, learning to drive a car. It is

tasks but other complex activities, e.g., riding a bicycle, learning to drive a car. It is important for parents and teachers to avoid teaching outside the zone of proximal development; conversely, it is also important that parents/teachers are able to sensibly with-draw scaffolding when a child has mastered, or is well on his or her way to mastering, an activ-ity. The use of older peers/mentors can be important in helping the child learning a slightly more challenging task. For individuals

can be important in helping the child learning a slightly more challenging task. For individuals with autism spectrum disor-ders, an awareness of the child’s levels of func-tioning in specific areas is critical given that some skills (e.g., nonverbal tasks like puzzles) are learned with greater ease than other (e.g., language-based) tasks. As with typically devel-oping children, teachers and peers can be helpful in facilitating learning in the child with ASD as tasks are “pitched” superficially

can be helpful in facilitating learning in the child with ASD as tasks are “pitched” superficially at an appropri-ate level and within the ability of the child with ASD to learn.

See Also Education Social Cognition  Zygosity  Synonyms Allele similarity  Definition It describes DNA sequence similarity or origin at a particular genetic locus or between twins. In dip-loid organisms, where one allele is usually inherited from the mother and one from the father, zygosity describes whether these homologous alleles have identical (homozygous) or different (heterozygous) DNA sequence. A diploid individ-ual may also be missing one (hemizygous) or both (nullizygous) alleles.

sequence. A diploid individ-ual may also be missing one (hemizygous) or both (nullizygous) alleles. Alleles are autozygous if they originate from a common ancestor via nonrandom mating or inbreeding; autozygous alleles are homo-zygous. Alternatively, alleles that coincide via ran-dom mating are allozygous and may be homozygous or heterozygous. Twins are described as monozygotic (MZ) when a single egg is fertilized to form one zygote, which later divides into two embryos. Dizygotic (DZ) twins

egg is fertilized to form one zygote, which later divides into two embryos. Dizygotic (DZ) twins occur when two eggs are fertilized independently, yielding two zygotes; on average, they share 50% of their DNA sequence, similar to nontwin siblings. Com-parisons of concordance (shared diagnosis) rates between MZ and DZ twin pairs are used to estab-lish the overall heritability of conditions or pheno-types in “twin studies.” Multiple twin studies have been conducted in autism spectrum disorders

in “twin studies.” Multiple twin studies have been conducted in autism spectrum disorders and demonstrate a significant role for genetic factors in the etiology of these syndromes.

See Also Dizygotic (DZ) Twins Monozygotic (MZ) Twins  Zyprexa  Synonyms Olanzapine  Definition Despite advancements in cognitive-behavior ther-apies, no single pharmacological therapy has suc-cessfully treated the disruptive-compulsive behaviors of Autism Spectrum Disorders (ASD), which include hand-flapping, tantrums, and self-injurious behaviors (Fido and Al-Saad 2008). Among the pharmacological agents examined to reduce disruptive-compulsive behaviors, atypical antipsychotics, including

agents examined to reduce disruptive-compulsive behaviors, atypical antipsychotics, including olanzapine, showed the most promise (Fido and Al-Saad 2008; Malek-Ahmadi and Simonds 1998; Malone et al. 2001). Specifically, ASD children prescribed olanzapine showed significant reductions in irritability, hyperactivity, and lethargy (Fido and Al-Saad 2008; Malek-Ahmadi and Simonds 1998; Malone et al. 2001). Unlike typical antipsychotic medica-tions, atypical antipsychotic medications block

et al. 2001). Unlike typical antipsychotic medica-tions, atypical antipsychotic medications block postsynaptic dopamine and serotonin receptors and have a lower risk of extrapyramidal symp-toms, such as dyskinesias, among children and adolescents (Malone et al. 2001). However, patients prescribed olanzapine experience several side-effects including: hyperlipidemia, hyper-prolactinemia, weight gain, and tardive dyskine-sia (Fido and Al-Saad 2008). Other case reports have also reported

weight gain, and tardive dyskine-sia (Fido and Al-Saad 2008). Other case reports have also reported hyponatremia and excessive masturbation from prolonged use of olanzapine among ASD patients (Chiang et al. 2013; Hergüner 2010). In addition, it remains uncertain whether long-term use of olanzapine produces detrimental effect to learning and development of ASD children (Fido and Al-Saad 2008). Fur-ther studies of olanzapine are required to determine its long-term side-effects and potential

Fur-ther studies of olanzapine are required to determine its long-term side-effects and potential applications for treating symptoms of ASD.

See Also Midazolam Neurontin (Gabapentine) Gaze  study, Mundy et al. (2007) found that 9-month-old infants readily made eye contact with the experi-menter and alternated gaze to toys in the context of gaze-prompting tasks. These gaze behaviors were key components of their measure of “initia-tion of joint attention” and did not significantly increase by 18 months of age. The findings with the gaze-prompting tasks suggest that infants are capable of alternating their own gaze in structured

gaze-prompting tasks suggest that infants are capable of alternating their own gaze in structured situations before they consistently do so during unstructured play. Of note, these tasks do not directly measure how well infants understand the gaze of others. Studies show that children with ASD are less likely to alternate gaze in a triadic context than children with typical development. At 20 months, toddlers with ASD were less likely to shift their gaze from the adult to a toy (or vice versa)

toddlers with ASD were less likely to shift their gaze from the adult to a toy (or vice versa) than comparison groups in gaze-prompting tasks (Wetherby et al. 2007). As seen in play observa-tions, 30-month-old children with ASD had many opportunities for joint play with the support of their parents, yet they rarely had episodes of coor-dinated joint engagement (Adamson et al. 2009). Even at older ages, gaze alternation remains less frequent among children with ASD than their peers with typical

ages, gaze alternation remains less frequent among children with ASD than their peers with typical development; this has been viewed as a fundamental problem for children with ASD (Mundy et al. 2009; Toth et al. 2006).

Following the Gaze of Others. A simple head turn takes on referential meaning when a person looks at something in the environment. Adults recognize this and turn to see what the other has seen. However, it is unclear whether young infants with typical development and children with ASD turn for that reason. In the typical gaze-following test, an adult looks at an object by turning and aligning his (or her) head and eyes with an object in the room, and in studies of “responding to joint

his (or her) head and eyes with an object in the room, and in studies of “responding to joint attention,” the adult also points during the look (Mundy et al. 2007). Research has shown that infants turn in the direc-tion of the adult’s head (and arm) movement, as early as 3–6 months of age under certain condi-tions, and that this following becomes more fre-quent between 12 and 18 months for typically developing infants (Flom et al. 2007; Jones et al. 2014; Mundy et al. 2007). The difficulty in

developing infants (Flom et al. 2007; Jones et al. 2014; Mundy et al. 2007). The difficulty in interpreting these findings is that as the adult turns toward a target, the adult’s large and salient head motion may draw infants in the correct direc-tion without them processing the adult’s gaze at all. Infants may simply be following the head motion that they see in their visual field and find the target object by chance.

To test whether infants follow head motion or eye gaze, Brooks and Meltzoff (2002) designed a special test using a gaze-following paradigm. The key manipulation was that the adult turned toward an object with open eyes for one group and closed eyes for the other group. The test controlled for head motion because the adult made the same head motion for both groups – what differed was whether the adult’s eyes were open or shut. If infants relied on simple head motion, they would turn in the same

eyes were open or shut. If infants relied on simple head motion, they would turn in the same direction as the adult in both cases. If, however, infants recognize that eyes are part of the referential act, they would turn to look at the target object in one situation but not the other. The results showed that 12- to 18-month-old infants were more likely to look at the adult’s target when she turned with open eyes than closed eyes. Infants did not simply follow head motion because they

she turned with open eyes than closed eyes. Infants did not simply follow head motion because they differentiated the head turns. Instead, infants followed the gaze of the adult to the target objects; infants from 12 to 18 months genuinely followed gaze.

The question remained as to when gaze follow-ing develops. To test for the emergence of gaze following, Brooks and Meltzoff (2005) used the same test of open versus closed eyes with 9-, 10-, and 11-month-olds. The findings suggested that genuine gaze following emerges at 10–11 months of age. At the two older ages, infants followed the adult’s head turns with open eyes more often than turns with closed eyes. In contrast, 9-month-olds looked at the target object in both cases, for eyes open and

closed eyes. In contrast, 9-month-olds looked at the target object in both cases, for eyes open and closed. The 9-month-olds “failed” to follow gaze – they followed the adult’s head turns even when her eyes were closed. These findings suggested that young infants were fol-lowing head motion rather than eye gaze.

With their lack of interest in eyes, will children with ASD follow a person’s gaze? It is unknown whether children with ASD follow eyes versus head motion because this particular empirical test has not yet been done. However, in other gaze-following protocols, infants at risk for ASD have deficits that are detectable after 12 months of age (Jones et al. 2014). By 20 months, toddlers with ASD were unlikely to follow the line of regard of an adult, even though the adult looked and pointed at a

unlikely to follow the line of regard of an adult, even though the adult looked and pointed at a target; their scores were lower than those of toddlers with other types of devel-opmental delay or with typical development (Wetherby et al. 2007). By about 4 years of age, children with ASD are more likely to follow the adult’s line of regard than younger children with ASD, but many children with ASD are still less likely to follow an adult’s actions than peers with typical development (Mundy et

are still less likely to follow an adult’s actions than peers with typical development (Mundy et al. 2009; Nation and Penny 2008).

Future Directions There are several provocative issues left to resolve for gaze behaviors. How do gaze behaviors relate to one another (e.g., detecting mutual gaze and gaze following)? Does improving one type of gaze behavior lead to global changes in other gaze behaviors? What are the developmental steps that help infants and children understand the referential nature of looking and seeing? Does the difficulty that children with ASD have with an elementary behavior such as gaze following

Does the difficulty that children with ASD have with an elementary behavior such as gaze following contribute to and predict their later deficits in understanding others’ minds (i.e., theory of mind)? Researchers have shown that interventions can prompt children with ASD to follow others’ line of regard, but they have not examined whether children with ASD are specifically following eye gaze (e.g., Kasari et al. 2006; Schreibman et al. 2015). Future research can continue to explore best practices

Kasari et al. 2006; Schreibman et al. 2015). Future research can continue to explore best practices to help children with ASD develop an interest in eyes and follow the eye gaze of others. One suggestion is that infants’ own experiences may help them learn. Infants and children may use their own visual experiences as a framework for understanding that behavior in others. When infants open and close their own eyes, they immediately change whether they can (or cannot) see their surroundings. This

their own eyes, they immediately change whether they can (or cannot) see their surroundings. This experience could help them recognize the same effect of eye closure for others. In an experimental study for infants with typical development, infants’ own experiences with visual obstructions changed how they interpreted another person’s line of sight (Meltzoff and Brooks 2008). The findings suggest that infants’ visual experiences change what they understand about looking. Will interventions

that infants’ visual experiences change what they understand about looking. Will interventions designed to vary the visual experi-ences of toddlers and children with ASD help them learn to follow the gaze of others? This and other interventions that actively involve the infant or child may greatly advance developmental pro-gress for children with ASD (Schreibman et al. 2015). The overall goal to improve children’s gaze following is important because gaze follow-ing predicts language

goal to improve children’s gaze following is important because gaze follow-ing predicts language development, which in turn can help children understand the minds of other people (Brooks and Meltzoff 2015; Mundy et al. 2009).

See Also * Eye Gaze * Joint Attention * RJA/IJA (Initiating/Responding to Joint Attention) * Theory of Mind  GEC (Global Executive Composite) * BRIEF (Behavior Rating Inventory of Executive Functions)  Gelotophobia and Autism Geraldine Leader and Arlene Mannion Irish Centre for Autism and Neurodevelopmental Research (ICAN), National University of Ireland, Galway (NUI Galway), Galway, Ireland

Definition Gelotophobia can be defined as the fear of being laughed at. It comes from the Greek word “gelos,” which means laughter, and the word “phobia” meaning fear (Ruch and Proyer 2008a; Titze 2009).

Historical Background Gelotophobia was originally derived from clini-cal case studies and introduced as a clinical condition by Titze (1996, 2009). However, gelotophobia is not a pathology but is experi-enced in the typically developing population also (Ruch et al. 2014). Gelotophobia is an interindividual differences variable. At its extreme end, it may lead to a pathological fear, but only in rare cases of gelotophobia (Ruch and Proyer 2008a, b). Given the implications and consequences

in rare cases of gelotophobia (Ruch and Proyer 2008a, b). Given the implications and consequences associated with gelotophobia, such as social anxiety and social withdrawal (Titze 1996, 2009), this is an important area of study. The phenomenon of gelotophobia has not only been investigated in the typically developing population. Previous research has found that 40% of individuals with eating disorders exceeded the threshold for a slight form of gelotophobia, 35.7% of individuals with

disorders exceeded the threshold for a slight form of gelotophobia, 35.7% of individuals with personality disorders experienced gelotophobia (Forabosco et al. 2009), and 24.6% of shame-bound neurotics showed gelotophobic tendencies (Ruch and Proyer 2008b). Gelotophobia is of importance to study in individuals with autism spectrum disorder (ASD). Due to the deficits in social communica-tion and social cognition, individuals with ASD may experience difficulties with empathy. This is a result of

social cognition, individuals with ASD may experience difficulties with empathy. This is a result of their reduced theory of mind capacity which hinders their ability to distinguish between one’s own mental state and that of others (Woods et al. 2013). Individuals with ASD may have greater difficulty understanding and compartmentalizing their own emotions and conveying these emotions to others (Woods et al. 2013). Individuals with ASD may have difficulty in understanding nonverbal cues, reciprocal

et al. 2013). Individuals with ASD may have difficulty in understanding nonverbal cues, reciprocal interaction, and initiating appropriate nonverbal communication (Frith 2004; Wing 1981). Indi-viduals with ASD may also have difficulty understanding humor. Weiss et al. (2012) com-pared whether children with ASD could appreci-ate slapstick comedy in comparison to children who were typically developing. While children with ASD could appreciate the material, they had greater difficulties in

developing. While children with ASD could appreciate the material, they had greater difficulties in discriminating humous from non-humous material. Given these reasons, gelotophobia is of relevance to study in individ-uals with ASD.

Current Knowledge Samson et al. (2011) conducted the first study that investigated gelotophobia in individuals with Asperger’s syndrome. Samson et al. (2011) investigated gelotophobia and its relationship with recalled experiences of having been laughed at in the past in 40 individuals with Asperger’s syndrome and in 83 neurotypically developing control group participants. It was found that in individuals with Asperger’s syndrome, 45% exceeded the cut-off of having at least a slight fear of

individuals with Asperger’s syndrome, 45% exceeded the cut-off of having at least a slight fear of being laughed at. This was in comparison to only 6% of control participants who exceeded this cut-off. There were statistically significant higher levels of gelotophobia found in the Asperger’s syndrome group, compared to the control group. It was found that 17.5% of individ-uals with Asperger’s syndrome had a marked fear of being laughed at, with a further 7.5% endorsing a severe fear of being

had a marked fear of being laughed at, with a further 7.5% endorsing a severe fear of being laughed at. High levels of gelotophobia were found in individuals with Asperger’s syndrome in comparison to control group participants, when both groups had a high frequency of recalled experiences of being laughed at. Therefore, recalled experiences of being laughed at does not explain why individuals with Asperger’s syndrome demonstrated high levels of gelotophobia. In control group participants, who

Asperger’s syndrome demonstrated high levels of gelotophobia. In control group participants, who were measured on the Autism-Spectrum Quotient, gelotophobia was positively associated with autism spectrum level, which demonstrates a relationship between gelotophobia and Asperger’s syndrome. The percentage of those with Asperger’s syndrome who presented with gelotophobia (45%) was the highest percentage reported in the literature at that time. Samson et al. (2011) outlined a number of reasons as

reported in the literature at that time. Samson et al. (2011) outlined a number of reasons as to why gelotophobia may be more common in individuals with Asperger’s syn-drome. First, individuals with Asperger’s syn-drome may have a higher frequency of situations where they were laughed at in the past. Second, individuals with Asperger’s syn-drome often lack social awareness and therefore may have difficul-ties understanding how to deal with someone laughing at them. Third, individuals with

have difficul-ties understanding how to deal with someone laughing at them. Third, individuals with Asperger’s syndrome may have difficulty reading social cues and may not be able to differentiate between good-natured teasing and bullying. Sam-son et al. (2011) provided a novel area of research for autism researchers to address.

Following Samson et al. (2011), there has been only a small number of studies that have investi-gated gelotophobia in individuals with ASD. Samson (2013) conducted a literature review on sense of humor in individuals with autism spec-trum disorders (ASD). While focused on humor, the literature review provided a valuable summary of the literature on humor in ASD and briefly discussed gelotophobia. Wu et al. (2015) investi-gated the role of parental attachment in relation to gelotophobia in

Wu et al. (2015) investi-gated the role of parental attachment in relation to gelotophobia in adolescents with ASD. Participants were 101 Taiwanese high school students with ASD with average intelligence and in 163 typically developing students. Adolescents with ASD showed significantly higher levels of gelotophobia than those without ASD. A negative relationship was found between attachment to fathers and gelotophobia in the ASD group. Therefore, as the quality of attachment to their fathers

fathers and gelotophobia in the ASD group. Therefore, as the quality of attachment to their fathers increased, gelotophobia decreased. However, no relationship was found between maternal attachment and gelotophobia. Therefore, by increasing the quality of father-child attach-ment in ASD, this may have implications for the occurrence of gelotophobia (Wu et al. 2015). The authors suggested that future research should investigate the relationship between attachment to peers and gelotophobia. Tsai

research should investigate the relationship between attachment to peers and gelotophobia. Tsai et al. (2018) investigated the relationship between gelotophobia and personality traits in 123 Taiwanese high school students with ASD and in 156 typically developing students. The ASD group demonstrated higher rates of gelotophobia than the control group. It was found that 42.3% of individuals with ASD had some form of gelotophobia, with 4.9% showing extreme gelotophobia, 4.9% with marked

with ASD had some form of gelotophobia, with 4.9% showing extreme gelotophobia, 4.9% with marked gelotophobia, and 35.8% with slight geloto-phobia. The personality traits examined were the Big Five: Extraversion, Conscientiousness, Agreeableness, Openness, and Emotional Stability. Extraversion was found to be a mediator of gelotophobia. Therefore, individuals who showed lower levels of extraversion experienced more gelotophobia, as these individuals were less able to engage in humor with

experienced more gelotophobia, as these individuals were less able to engage in humor with others. The authors suggested that these results may be appli-cable to participants from an Asian cultural back-ground, and therefore, the results of this research need to be replicated across different cultures.

Grennan et al. (2018) conducted a literature review on the link between gelotophobia and high-functioning ASD (hfASD). In this review, the characteristics of gelotophobia were discussed, including the conceptualization and measurement implications of gelotophobia, the etiology and consequences of gelotophobia, and the social competence of gelotophobes. The importance of studying gelotophobia in hfASD was discussed, as well as the relationships between hfASD and other variables relevant to

in hfASD was discussed, as well as the relationships between hfASD and other variables relevant to gelotophobia, includ-ing comorbid psychopathology, quality of life, social functioning, perceived social support, past experiences of bullying, and shame-bound emo-tions. This review demonstrated the need for fur-ther research to be conducted in the area and discussed the importance of better understanding the relationship between gelotophobia and comor-bid psychopathology in individuals with ASD.

the relationship between gelotophobia and comor-bid psychopathology in individuals with ASD. Following this, Leader et al. (2018) conducted an empirical investigation specifically on individ-uals with hfASD, where gelotophobia was exam-ined in 103 adults with hfASD and in 137 typically developing control participants. Moreover, it was the first study of its kind to explore the relationship between gelotophobia and other psychosocial constructs and the presence of psychopathological disorders in

gelotophobia and other psychosocial constructs and the presence of psychopathological disorders in indi-viduals with hfASD. The study examined gelotophobia in relation to a number of other vari-ables, including social functioning, perceived social support, life satisfaction, quality of life, past experiences of bullying, and comorbid psychopathology. Individuals with hfASD pre-sented with high rates of gelotophobia (87.4%) compared to 22.6% of control participants. This was a higher rate of

rates of gelotophobia (87.4%) compared to 22.6% of control participants. This was a higher rate of gelotophobia, almost double, than what was found in the results of the Samson et al. (2011) study. Significantly higher levels of gelotophobia and higher past experiences of bullying were found in those with hfASD, in comparison to typically developing control par-ticipants. The hfASD group showed lower quality of life, life satisfaction, social functioning, and perceived social support, in

lower quality of life, life satisfaction, social functioning, and perceived social support, in comparison to the control group. Of the 84.7% of participants with hfASD who presented with gelotophobia, 34% demonstrated a marked form of gelotophobia, 29.1% presented with an extreme form, and 24.3% presented with a slight form of gelotophobia.

Leader et al. (2018) found significant negative correlations between gelotophobia and quality of life, life satisfaction, perceived social support, and depression and anxiety. A significant positive correlation was found between gelotophobia and personal involvement in bullying and social func-tioning. The predictors of gelotophobia were examined in Leader et al. (2018). Social function-ing, past experiences of bullying, anxiety, and life satisfaction were identified as predictors of

past experiences of bullying, anxiety, and life satisfaction were identified as predictors of gelotophobia. It was found that past experiences of verbal bullying were a stronger predictor of gelotophobia than physical and indirect forms of bullying.

Future Directions Given the small number of studies that have focused on gelotophobia in individuals with ASD, there is a need for future research to focus on a number of specific directions. First, other methodologies should be used other than self-report. Self-report may lead to incidences of social desirability among participants. Where research requires individuals to report remembered situa-tions of past experiences of bullying, self-report can be compromised by age-related memory loss.

of past experiences of bullying, self-report can be compromised by age-related memory loss. Future research could also include interviewing instead of questionnaires, field observation, and the use of peer and parental reports (Wu et al. 2015). Samson et al. (2011) outlined that peer-reports by teachers or parents could be used to investigate the influence of prior experiences of being laughed at, and whether this affects the development of gelotophobia later in life. Other peer report could come

whether this affects the development of gelotophobia later in life. Other peer report could come from other individuals in a person’s life, such as siblings or employers, in order to encapsulate the influence of bullying exposure on gelotophobia. Second, more research is needed to determine the relationship between gelotophobia and other fears and phobias. Samson et al. (2011) suggested that future research should focus on gelotophobia in relation to the develop-ment of social phobia. Leader et

research should focus on gelotophobia in relation to the develop-ment of social phobia. Leader et al. (2018) found that the presence of an anxiety disorder diagnosis was a predictor of gelotophobia. This possible link between gelotophobia and anxiety needs to be examined in future research. Third, research is needed on ASD populations other than individ-uals with hfASD. Gelotophobia needs to be inves-tigated across the autism spectrum, from individuals with more severe symptoms of ASD to those

across the autism spectrum, from individuals with more severe symptoms of ASD to those with milder symptoms. Fourth, the rela-tionship between gelotophobia and ASD severity needs to be better understood. Samson (2013) outlined that if the relationship between humor and ASD severity is investigated in future research studies, a model could be designed to explain the connections between symptom sever-ity and the domains of humor in individuals with ASD.

Fifth, given the negative consequences of gelotophobia, research is needed to determine how gelotophobia can be treated. Gelotophobia must first receive further empirical investigative work in order to support its prevalence and further determine its consequences, symptomatology, and consequences in individuals with ASD. This will in the future lead to the development of spe-cific intervention and preventative strategies for its treatment. While literature exists on strategies to reduce bullying

preventative strategies for its treatment. While literature exists on strategies to reduce bullying in ASD, empirical evidence is needed on the intervention of and prevention of gelotophobia in individuals in ASD. This treatment may include learning to differentiate between teasing and mocking, and strategies which may help individuals with hfASD to disen-tangle harmless teasing from hostile bullying (Attwood 2004). Sixth, research is needed on the use of the Picture-Geloph in individuals with

(Attwood 2004). Sixth, research is needed on the use of the Picture-Geloph in individuals with hfASD. The Picture-Geloph is a semi-projective tool, piloted by Ruch et al. (2009) which involves 20 cartoons depicting social situations which involve laughter or potential laughter. Whether these cartoons are interpreted in the same way by individuals with hfASD as they are by individ-uals in the typically developing population is a question for future research to determine. Seventh, gelotophobia

developing population is a question for future research to determine. Seventh, gelotophobia needs to be investigated with children with ASD. A child version of the PhoPhiKat (Ruch and Proyer 2009) has been developed, which measures gelotophobia, gelotophilia (i.e., the joy of being laughed at), and katagelasticism (i.e., the joy of laughing at others). The child version has been used in previous research with typically developing chil-dren (Proyer et al. 2012). Research is needed to determine

research with typically developing chil-dren (Proyer et al. 2012). Research is needed to determine the validity of this measure in children with ASD. Finally, research is needed to determine the relationship between gelotophobia and alexity-mania in individuals with hfASD. Alexitymania is the inability to express emo-tions and has been identified as being an issue in individuals with ASD (Costa et al. 2017; Fitzgerald and Bellgrove 2006). A link between gelotophobia and alexitymania has been

et al. 2017; Fitzgerald and Bellgrove 2006). A link between gelotophobia and alexitymania has been dis-covered (Boda-Ujlaki and Séra 2013), yet future research is needed to empirically explore these concepts in individuals with hfASD. In conclusion, the area of gelotophobia and ASD is a novel field of autism research, where much more research is needed to expand our under-standing of the concept of gelotophobia in indi-viduals with ASD.

See Also * Mental Health and ASD * Social Behaviors and Social Impairment  Genahist™[OTC] * Diphenhydramine  Gender Differences Marisela Huerta Center for Autism and the Developing Brain, Weill Cornell Medicine, New York, NY, USA

Definition Gender differences in autism spectrum disorders (ASD) primarily refer to the behavioral pheno-typic differences between affected males and females. Gender differences have also been exam-ined with respect to the diagnosis and prevalence of ASD. Of note, the term “gender differences” is used here to describe socially defined as well as biologically defined differences (elsewhere referred to as “sex differences”) between the sexes.

Historical Background Kanner’s earliest writings about autism highlighted the now frequently documented gen-der difference in the prevalence of the disorder (1943). These early case studies, of eight boys and three girls, described few other gender differences within the sample; the male and female children were described similarly with respect to their lim-ited social reciprocity and communication func-tioning and atypical interests and repetitive patterns of behavior. Nevertheless, since

func-tioning and atypical interests and repetitive patterns of behavior. Nevertheless, since Kanner’s time, there has been much speculation that gender differences exist in the clinical presentation of ASD. These concerns have been raised in no small part because much of the research on ASD has used clinic and research samples with a predom-inantly or exclusively male composition (Lai et al. 2014).

Current Knowledge Researchers have proposed models of ASD that explain and predict gender differences such as Simon Baron-Cohen’s “extreme male brain” the-ory which proposes that testosterone-driven dif-ferences in cognition are at the core of ASD (2005). Others propose a “female protective model”; this model states that females require larger genetic insults for ASD symptom expres-sion and has found some support in genetic stud-ies (Jacquemont et al. 2014). More recently, the concept of

has found some support in genetic stud-ies (Jacquemont et al. 2014). More recently, the concept of “camouflaging” has been used to explain the gender differences in ASD; the term is currently used in an interchangeable manner to describe a number of behaviors the use of com-pensatory strategies (Dean et al. 2017; Lai et al. 2017; Livingston and Happé 2017), the presence of an atypical cluster of symptoms (Kirkovski et al. 2013), as well as self-reported efforts to mini-mize or “hide” impairments

(Kirkovski et al. 2013), as well as self-reported efforts to mini-mize or “hide” impairments (Bargiela et al. 2016; Lai et al. 2017). However, despite the fact that there are very clear sex differences in the preva-lence of ASD, the existing literature describes few differences in the behavioral and clinical presen-tation of ASD in males and females. The follow-ing are highlights of the work completed to date. Current prevalence estimates place the overall male-to-female ratio of ASD at 3:1

to date. Current prevalence estimates place the overall male-to-female ratio of ASD at 3:1 (Loomes et al. 2017). In samples with moderate to severe intel-lectual disability, the male-to-female ratio decreases to 1.95:1, while in samples without cognitive impairment, the ratio is closer to 5.5:1 (see Fombonne 2005 for a review). There is also evidence that the male-to-female ratio in ASD is higher in “essential autism” (ASD with no signif-icant congenital anomalies) than in “complex autism” or

in “essential autism” (ASD with no signif-icant congenital anomalies) than in “complex autism” or ASD associated with significant dysmorphology or microcephaly (Miles et al. 2005).

As with ASD prevalence, research studies have consistently found gender differences in cognitive functioning. Affected females, on average, have lower nonverbal and adaptive scores than males (Van Wijngaarden-Cremers et al. 2014; Frazier et al. 2014; Volkmar et al. 1993; Lord et al. 1982). Gender differences in language develop-ment merit further study. Overall, when compared to affected males, females demonstrate lower ver-bal ability and greater difficulties in the areas of language

males, females demonstrate lower ver-bal ability and greater difficulties in the areas of language processing and comprehension (e.g.; Frazier et al. 2014; Konstantareas et al. 1989). In the area of pragmatic language skills, toddler girls demonstrate greater impairments than boys (Car-ter et al. 2007; Hartley and Sikora 2009); this gender difference is reversed in school-age sam-ples (Conlon et al. 2019).

With respect to the core features of ASD, large-scale studies have been able to account for the effects of developmental factors (such as IQ and language level) and have found no gender differ-ences in autism severity (Kaat et al. 2020; Tillmann et al. 2018). Similarly, gender differ-ences have not been found in the social commu-nication behavior of toddlers, children, and adults with autism (van Wijngaarden-Cremers et al. 2014). In contrast, studies that examine social behaviors more

(van Wijngaarden-Cremers et al. 2014). In contrast, studies that examine social behaviors more generally find that female children demonstrate compensatory strategies (e.g., Dean et al. 2017) and present with relative strengths compared to males (Jamison et al. 2017; Head et al. 2014). Consistent with these findings, female children demonstrate fewer impairments than males on “higher-level” social communica-tion items of the ADOS, behaviors that as a group are not specific to a diagnosis of ASD

communica-tion items of the ADOS, behaviors that as a group are not specific to a diagnosis of ASD (Bishop et al. 2016). In this same study, no gender differ-ences were found on items uniquely associated with ASD, those that assess basic social communication.

Various studies have identified gender differ-ences in some aspects of restricted and repetitive behavior (RRBs). In samples of children, adoles-cents, and adults, but not toddlers, females with ASD demonstrate fewer RRB symptoms than males (Van Wijngaarden-Cremers et al. 2014). Recent studies reveal that this gender difference is found across all levels of functioning in RRB total scores of the ADI-R and RBS-R restricted interest scores (Frazier et al. 2014). Notably, RRBs described as

of the ADI-R and RBS-R restricted interest scores (Frazier et al. 2014). Notably, RRBs described as “insistence on sameness” behaviors on the ADI-R do not appear to be pre-dicted by gender (Hus et al. 2007; Richler et al. 2010). Qualitative examination of repetitive behavior in school-age children reveals further differences. Girls, as compared to boys, are less likely to engage in repetitive use of objects and more likely to demonstrate fixations, often on age-appropriate topics (Hiller et al.

of objects and more likely to demonstrate fixations, often on age-appropriate topics (Hiller et al. 2014).

In regard to the broader behavioral and psy-chological functioning of children and adults with ASD, results vary by developmental level and age. In a sample composed primarily of children and young adults with ASD and intellectual dis-ability, males and females demonstrate similar levels of disruptive behavior, hyperactivity, and attentional difficulties (see, e.g., Brereton et al. 2006). In the Simons Simplex Study, comprised primarily of cognitively able children and adoles-cents with ASD,

Simons Simplex Study, comprised primarily of cognitively able children and adoles-cents with ASD, females demonstrate greater externalizing problems relative to males (Frazier et al. 2014) girls also show greater sleep problems, anxiety/mood, and emotional problems (Hartley and Sikora 2009; Holtmann et al. 2007, Mandy et al. 2012). The findings with respect to attention problem and overactivity in children are mixed (Mandy et al. 2012; Frazier et al. 2014). In ado-lescence and adulthood, females

children are mixed (Mandy et al. 2012; Frazier et al. 2014). In ado-lescence and adulthood, females diagnosed with ASD demonstrate greater increases in anxiety and depression (Gotham et al. 2015; Solomon et al. 2012). Self-report data also suggests such gender differences in mood disruptions, but not in anxiety (Lever and Geurts 2016).

Few studies have longitudinally examined gender differences in the core symptoms of ASD, and fewer still have included sufficient samples of females. Emerging research suggests that in early childhood, female children may demonstrate better trajectories than their male counterparts (Waizbard-Bartov et al. 2020). In adulthood, males and females present with sim-ilar clinical profiles (Howlin et al. 2004; Shattuck et al. 2007; Taylor and Seltzer 2010). However, when broader outcomes are examined

2004; Shattuck et al. 2007; Taylor and Seltzer 2010). However, when broader outcomes are examined (e.g., employment), there is evidence that adult females fare worse than males (Howlin et al. 2004; Taylor and Mailick 2014). Self-report from adult women with ASD further suggests that unique challenges arise when impairments associated with ASD intersect with cultural norms and expectations of women’s behavior (Bargiela et al. 2016).

In sum, the existing body of research points to a clear gender difference in the prevalence ASD; the male-to-female ratio is estimated at 3:1, with a greater frequency of females at the lower end of cognitive ability. Taking together all of the cur-rently available research, gender differences in the behavioral phenotype of ASD are subtle (e.g., qualitative differences in repetitive behavior) and reflect interactions among multiple factors (e.g., developmental level). At present, sex

and reflect interactions among multiple factors (e.g., developmental level). At present, sex differences in social functioning are limited to broader areas of functioning that are nonspecific to ASD. Impor-tantly, the current research on gender differences in ASD should be considered in light of the fol-lowing: female children with ASD are less likely to have a formal diagnosis of ASD (Giarelli et al. 2010) and more likely to be diagnosed later than their male peers (Begeer et al. 2013; McCormick

2010) and more likely to be diagnosed later than their male peers (Begeer et al. 2013; McCormick et al. 2020).

Future Directions While significant strides have been made in recent years to utilize large samples to examine differ-ences between the male and female autism phe-notype (see Kaat et al. 2020; Tillmann et al. 2018), further quantitative and qualitative examination of the gender differences in ASD in large and well-characterized samples of children and adults is needed. Important to this work will be our ability to identify other within-group differences in ASD (see Joseph et al. 2002; Miles et

be our ability to identify other within-group differences in ASD (see Joseph et al. 2002; Miles et al. 2005; Lord et al. 2015; Stelios et al. 2017) and further refine our ability to assess the core symptoms of ASD across development and contexts (Anagnostou et al. 2015).

See Also * Subtyping Autism  Gender Dysphoria and Autism Spectrum Disorders Roald A. Øien1,2, Ella Maja Viktoria Bergman3 and Anders Nordahl-Hansen4,5 1Department of Psychology/Department of Education, UIT – The Arctic University of Norway, University of Tromsø, Tromsø, Norway
2Yale Child Study Center, Yale Autism Program, Yale University School of Medicine, New Haven, CT, USA

3Department of Education, UiT – The Arctic University of Norway, Tromsø, Norway 4Department of Special Needs Education, UiO University of Oslo, Oslo, Norway 5Faculty of Education, Østfold University College, Halden, Norway  Definition The term Gender Dysphoria (GD) is defined as a mismatch between the phenotypic sex of an individual and that person’s perception of their biological gender (American Psychiatric Association 2013), and was previously defined as Gender Identity Disorder (American

Psychiatric Association 2013), and was previously defined as Gender Identity Disorder (American Psychiat-ric Association 2000; World Health Organization 1992). GD hereby used to describe Gender Iden-tity Disorder (GID), and Gender Dysphoria (GD) is increasingly reported in ASD research.

Background The term gender refers not to the sex one is born with but to the psychological identification of oneself as the traditional dichotomy female or male, but also as both, neither, or something else regardless of the physical attributes. The aware-ness of one’s gender usually emerges around 18 months to 3 years of age. However, sometimes an individual’s natal sex is not the same as their gender (George and Stokes 2017a). In DSM-5, the term “gender dysphoria” (GD) is used and van

their gender (George and Stokes 2017a). In DSM-5, the term “gender dysphoria” (GD) is used and van Schalkwyk et al. (2015) points out the difference in terminology from the DSM-IV, where the diagnosis previously was named “gen-der identity disorder,” which gave the impression that being transgender was a form of mental ill-ness. There are still some concerns regarding the criteria in DSM-5 that the individual must experi-ence a certain presence of distress to be diagnosed, which might result in

individual must experi-ence a certain presence of distress to be diagnosed, which might result in individuals experiencing perhaps confusion, but not distress, not receiving proper help and guidance (van Schalkwyk et al. 2015). This process towards an acceptance of a more diverse view of gender identity and gender roles can be compared to the one of homosexual-ity, which was classified as a mental illness by the American psychiatric association until 1987 (Burton 2015). It is estimated that

illness by the American psychiatric association until 1987 (Burton 2015). It is estimated that between 0.005–0.014% of all natal males and between 0.002–0.003% of all natal females would have been diagnosed with GD following current diag-nostic criteria (George and Stokes 2017b). GD can, for instance, be expressed by a wish to dress in clothes typically worn by the opposite sex (defined by that individual’s cultural norms), adapting to cross-gender norms, and typical thought patterns related to

cultural norms), adapting to cross-gender norms, and typical thought patterns related to the opposite sex.

Current Knowledge There has been increased attention towards individuals with ASD who also express gender-related issues in the past years, and both case reports and systematic studies have been published showing that it is apparent that there is some overlap between ASD and GD (George and Stokes 2017b). A Dutch study (De Vries et al. 2010) looked at the rates of ASD in 204 children and adolescents referred to a gender identity clinic, finding that 7.8% (n ¼ 16) of them were thought to qualify

referred to a gender identity clinic, finding that 7.8% (n ¼ 16) of them were thought to qualify as having ASD. Of these indi-viduals, one in seven children had persistent GID (they used DSM-IV, which is more inclusive concerning criteria compared to ICD-10). Five of nine adolescents met criteria for GID, and the remaining met the criteria for Gender Identity Disorder Not Otherwise Specified (GID-NOS) or transvestic fetishism, leading the authors to con-clude that ASD is more common in GID

(GID-NOS) or transvestic fetishism, leading the authors to con-clude that ASD is more common in GID individ-uals (De Vries et al. 2010). van Schalkwyk et al. (2015) points out that this conclusion might be more correctly rephrased as “ASD is more com-mon in individuals with a broad range of gender-related concerns or questions” (van Schalkwyk et al. 2015). They also suggest that gender-formation in children can be seen as a process in development, where children reflect upon their identity

in children can be seen as a process in development, where children reflect upon their identity through and by their gender and eventu-ally forming an idea of this. However, due to large variations in cognitive and social development in children, this might be difficult to quantify by age-groups in research. This concept of gender-formation in childhood as a process with many possible outcomes is supported by research, where children with GD were followed up 10 years later, showing that only 27%

by research, where children with GD were followed up 10 years later, showing that only 27% of the individuals still qualified for a GD diagnosis. The majority of the non-GD individuals had instead developed a non-heterosexual identity. This indicates that gender identity and sexuality in some children are fluid concepts that later in puberty tend to crystallize into a more “final” form. ASD children display different patterns in social development, so this development of gender- and sexual

display different patterns in social development, so this development of gender- and sexual identity might take on other forms or time perspectives, compared to TD children (van Schalkwyk et al. 2015). It is clear that co-occurrence of ASD and GD can lead to significant confusion, distress, and difficulties for the affected individual, primarily if the individual is not supported and guided. Therefore, it is essen-tial for clinicians, health personnel, school teachers, and relatives to be

Therefore, it is essen-tial for clinicians, health personnel, school teachers, and relatives to be informed and pre-pared to help and guide ASD individuals and to be aware of the increased possibility of confusion and uncertainty regarding their gender identity and sexuality already from an early age.

Pasterski et al. (2014) examined the co-occurrence of GD and autistic traits in an adult population with a confirmed diagnosis of transsex-ualism. To measure autistic traits, the Autism Spec-trum Quotient (AQ) was administered. It is a self-administered questionnaire designed to measure where an individual lies on the spectrum, from normal to autistic. It uses a Likert scale comprised of five scales: social skills, attention switching, attention to detail, communication, and imagina-tion. A

scales: social skills, attention switching, attention to detail, communication, and imagina-tion. A person who scores high on the AQ scale are often not very skilled at social interaction, have an unusual ability to focus, but struggles with switching attention, have an eye for details but lacks imagination, traits prevalent among individ-uals on the spectrum. Their results showed that 7.1% in Female to Male (FtM) and 4.8% in Male to Female (MtF) individuals scored above the esti-mated

in Female to Male (FtM) and 4.8% in Male to Female (MtF) individuals scored above the esti-mated threshold for a potential diagnosis of autism, a clear average above the prevalence in the general population. The result that there were no significant differences in the co-occurrence of ASD and GD between natal females and males differs somewhat from other reports. Other studies have found that there’s a higher ratio of natal males in childhood who present with ASD and GD diagnoses, sepa-rately

a higher ratio of natal males in childhood who present with ASD and GD diagnoses, sepa-rately (Pasterski et al. 2014), and in the similar study by Jones et al. (2012) where they compared FtM and MtF transsexuals and found that the FtM group displayed a higher mean AQ than control groups of both sexes and the MtF group. They suggested that the Extreme Male Brain (EMB) theory might explain autistic traits as a part of a masculinized phenotype in FtM transsexuals.

A recent study examined the relationship between GD, ASD, and sexual orientation by looking for GD traits, and not the diagnosis, in a population of individuals diagnosed with ASD. They further hypothesized that GD traits would have a mediating effect between sexual orienta-tion and ASD traits (George and Stokes 2017b). Their results concluded that the earlier seen asso-ciation between GD traits and autistic traits also is true the reversed direction. Autistic indi-viduals score higher on the

and autistic traits also is true the reversed direction. Autistic indi-viduals score higher on the GD scale than the typically developing control group, indicating that there is a bigger gender-variance in an autistic population. Autistic persons born as women only differed from those borne as men only on one of the subscales. Levels of GD traits were signif-icantly higher among all other sexuality groups (homosexuality, bisexuality, asexuality, and other) than heterosexuality, and by

sexuality groups (homosexuality, bisexuality, asexuality, and other) than heterosexuality, and by heterosexuality, the authors refer to being attracted to the opposite of one’s natal sex. The EMB theory is also discussed here, with similar conclusions as men-tioned earlier that high levels of fetal testosterone (fT) to some degree might explain the heightened rate of GD in ASD females, by shaping the indi-vidual in a masculine way. However, this reason-ing does not explain the same heightened

the indi-vidual in a masculine way. However, this reason-ing does not explain the same heightened rates of GD in males with ASD (George and Stokes 2017b).

The internet has made explicit sexual material available for the public, and there are countless of other sources that we are daily exposed to, providing different messages of relations, sexual-ity, norms, and ideals (George and Stokes 2017b). These changes have also sparked new life into the research on sexuality, and also on the topic of autism and sexuality. Flirting, courting, and relationships are activities that many typically developing (TD) individuals find challenging at times, and

are activities that many typically developing (TD) individuals find challenging at times, and with an ASD where one of the most prominent traits concerns difficulties in the social domain, this can prove especially challeng-ing. There are not a plethora of studies on autism and sexuality, and the few have been conducted on institutionalized, autistic male individuals with varying cognitive abilities living in group homes. These individuals were often reported engaging in more or less problematic

living in group homes. These individuals were often reported engaging in more or less problematic sexual behavior, such as masturbating in public and inap-propriate removal of clothes in front of others. Important to note though is that the studied sub-jects might have influenced the results from these studies and may not be representable for so-called “high functioning” autistic individuals living suc-cessfully as a part of society (George and Stokes 2017b). It is worth noting though that these

suc-cessfully as a part of society (George and Stokes 2017b). It is worth noting though that these most studies have had small- and gender-atypical male samples might have obscured more correct ten-dencies (Gilmour et al. 2012). The study by George and Stokes (2017b) found higher rates of asexuality in ASD individuals compared to TD but speculate that there might be several reasons for this. It is not uncommon for ASD individuals to experience sensory issues, hypersensitivity, tac-tile

It is not uncommon for ASD individuals to experience sensory issues, hypersensitivity, tac-tile defensiveness, and other physical obstacles and might also find social interaction challenging. These factors might make lead to a decision of celibacy, even though it necessarily doesn’t mean that the individual lacks feelings of sexual desire. Males and females with ASD also reported higher rates of bisexuality compared to their sex-matched TD group, supporting the finding by Gilmour et al. (2012).

bisexuality compared to their sex-matched TD group, supporting the finding by Gilmour et al. (2012). Several participants expressed that either heterosexual or homosexual sexual identity did not describe their identity correct but suggested others such as asexual, intersexual, transsexual, and “other.” George and Stokes (2017b) discuss the EMB theory and points out that higher than usual levels of fT among males could be expected to lead to a hyper-masculinized individual resulting in

levels of fT among males could be expected to lead to a hyper-masculinized individual resulting in heterosexuality. There is no convincing evidence for this connection. Some studies find this to be the case, and others have found opposite results where male ASD individuals have more homosexual tendencies, some found no relationship, and other studies again have found a relationship between lower fT and higher homosexuality. It is clear that there is no consensus on how fT affects the sexuality

fT and higher homosexuality. It is clear that there is no consensus on how fT affects the sexuality of males.

Future Directions The field of autism spectrum disorders (ASD) and gender dysphoria (GD, here also includes GID) have seen a massive increase in research on this somewhat rare co-occurrence over the past decades. Notably, a considerable rise can be found in studies published in scientific journals over the past 3–4 years (Øien et al. 2018). This increased interest in gender dysphoria, trends, and patterns could explain sexuality and ASD we see elsewhere in the society, where sexual attitudes

patterns could explain sexuality and ASD we see elsewhere in the society, where sexual attitudes that previously were taboo is receiving increasing acceptance, and the empowering of the LGBT movement has also been seen. Further-more, it is likely that the technologies such as social media and easier access to relevant infor-mation and internet communities have affected and inspired individuals to be open about their sexuality and provided them with a way of interacting and discussing their

to be open about their sexuality and provided them with a way of interacting and discussing their difficulties with someone in the same situation. While we do see a significant improvement in attitudes and accep-tance for sexual minorities, there is still a long way to go before we meet a global improvement for all of these sexual minorities. Most studies are conducted in liberal Western countries, and little is currently known about the co-occurrence in more conservative countries where, e.g.,

and little is currently known about the co-occurrence in more conservative countries where, e.g., homo-sexuality is still highly taboo. Besides from the demand for more studies from other cultures, the most prominent diffi-culty for the field of GD and ASD research is the fact that the co-occurrence is rare, and thus very few individuals are to be recruited to studies.

See Also * Mental Health and ASD * Social Behaviors and Social Impairment  Gene Regulatory Networks in Autism Melody Oliphant and Thomas Fernandez Yale Child Study Center, Yale University School of Medicine, New Haven, CT, USA  Structure Findings from genetic studies of autism spectrum disorder (ASD) reflect a central divergence as to whether the majority of genetic risk arises from common variation that is frequent but with low penetrance, or from rare variation with a high degree of

variation that is frequent but with low penetrance, or from rare variation with a high degree of penetrance and large effect. ASD is char-acterized by a high degree of both genetic and phenotypic heterogeneity. Despite long-standing evidence that ASD is a highly heritable, polygenic disorder, there still remains some uncertainty about the full allelic spectrum that underlies ASD. With the advent of next-generation sequencing technologies, researchers have focused on the contribution of de novo

of next-generation sequencing technologies, researchers have focused on the contribution of de novo variation through whole exome sequencing (WES) studies and genome-wide genotyping arrays to identify rare single nucleotide variants (SNVs), insertion-deletions (indels), and copy number variants (CNVs) asso-ciated with ASD. The identification of such vari-ation in ASD-diagnosed individuals has resulted in the discovery of dozens of definitive ASD risk loci and genes over the past decade (De Rubeis

in the discovery of dozens of definitive ASD risk loci and genes over the past decade (De Rubeis et al. 2014; Dong et al. 2014; Iossifov et al. 2014; Iossifov et al. 2012; Neale et al. 2012; O’Roak et al. 2012; Pinto et al. 2014; Sanders et al. 2012), and confirmed the critical role of de novo germline mutation in the phenotypic presentation of ASD (Sanders et al. 2015).

Until recently, studies that attempted to investi-gate the role of common variation in ASD often proved insufficiently powered to reliably identify statistically significant findings. A population-based study resolved such limitations by analyzing the complex interplay of common, rare, inherited, and de novo variation across a Swedish epidemio-logical sample (Gaugler et al. 2014). The study concluded that while high-impact rare variation, especially de novo mutations, may largely deter-mine the

that while high-impact rare variation, especially de novo mutations, may largely deter-mine the individual liability for developing ASD, common variants account for the most substantial contribution to the narrow-sense heritability. In the investigation of de novo variation impli-cated in ASD, the most common study design involves the study of simplex families, either clas-sified as trios (affected proband and two unaf-fected parents) or quartets that also include at least one unaffected

proband and two unaf-fected parents) or quartets that also include at least one unaffected sibling. Across these studies, most estimates suggest that as many as 1000 genomic loci underlie risk for ASD. To assess the contribution of risk-conferring de novo muta-tions, researchers have assessed the recurrence of disruptive genetic events within the same gene or genomic loci as well as the significance of such recurrence, while burden analyses evaluated the presence or absence of significant

of such recurrence, while burden analyses evaluated the presence or absence of significant enrichment among classes of mutations in cases compared to controls.

Across multiple studies of genetic variation in ASD, burden analyses consistently demonstrate a significant excess of de novo loss-of-function (LoF) or likely-gene-disrupting (LGD) mutations in probands that result in a premature truncation of the gene, shift in the protein reading frame, or canonical splice site variant across large cohorts (De Rubeis et al. 2014; Iossifov et al. 2012; O’Roak et al. 2011; Sanders et al. 2015). While statistical evidence for the contribution of de novo missense

al. 2011; Sanders et al. 2015). While statistical evidence for the contribution of de novo missense mutations in ASD appears less robustly replicated in the literature, some studies have dem-onstrated the importance of such variation in the development of ASD (Sanders et al. 2012), espe-cially those missense variants predicted to be dam-aging by tools such as PolyPhen-2 (De Rubeis et al. 2014). Multiple studies have confirmed the impor-tance of rare CNVs as a source of risk in the genomic

Multiple studies have confirmed the impor-tance of rare CNVs as a source of risk in the genomic architecture of ASD (Bucan et al. 2009; Kumar et al. 2008; Marshall et al. 2008; Mefford et al. 2008; Moreno-De-Luca et al. 2013; Pinto et al. 2010, 2014; Sanders et al. 2011; Sanders et al. 2015; Sebat et al. 2007; Weiss et al. 2008). Indeed, two studies have further shown that de novo CNVs in individuals diagnosed with ASD demonstrated greater frequency, length, and inter-section of disrupted genes

diagnosed with ASD demonstrated greater frequency, length, and inter-section of disrupted genes when compared to controls (Pinto et al. 2014; Sanders et al. 2015). Beyond such findings, one study hypothesized that separate classes of mutations may converge on a common set of genes associated with ASD.

Function Bolstered by the development of advanced statisti-cal modeling methods and software packages, researchers have sought to translate genetic find-ings of de novo variation associated with ASD into a broad understanding of the pathophysiological mechanisms that underlie ASD neurobiology. The central methodology of such translational efforts remains guided by two central principles: (1) recur-rent de novo LGD or damaging missense mutations that occur within the same gene in unrelated

recur-rent de novo LGD or damaging missense mutations that occur within the same gene in unrelated indi-viduals point toward genes that are likely to be associated with ASD, given the infrequency of such occurrences; and (2) risk loci and risk genes that share the same associated phenotype will con-verge in functional clusters that correlate to shared biological pathways, regulatory functions, devel-opmental context, or coexpression networks. Several seminal papers that investigated genetic

devel-opmental context, or coexpression networks. Several seminal papers that investigated genetic regulatory networks implicated in ASD with a statistically robust framework led to a find-ing widely replicated throughout the literature: a convergence on genes that encode for critical components of networks involved in proper syn-aptic function, chromatin modification, and the regulation of transcription in ASD (De Rubeis et al. 2014; Pinto et al. 2014; Sanders et al. 2015). Among these genes,

in ASD (De Rubeis et al. 2014; Pinto et al. 2014; Sanders et al. 2015). Among these genes, both de novo CNVs and de novo LGD mutations have been shown to play a role in establishing such convergence, fur-ther emphasizing the possibility that different classes of variation may target a common biolog-ical set of ASD risk genes.

These pathways, however, include a diverse variety of biological components, from voltage-gated ion channels to histone-modifying enzymes. Specifically, one report identified significant enrichment for histone-modifier genes, which encode histone-modifying enzymes (De Rubeis et al. 2014). These histone-modifying enzymes work in tandem with chromatin remodelers to read and recognize posttranslational modifications and ultimately activate or repress transcription. Another report further hypothesized

modifications and ultimately activate or repress transcription. Another report further hypothesized that genes involved in chromatin modification may in fact regulate the expression of synaptic genes (Sanders et al. 2015). Such a theory draws support from findings that show both direct and indirect regulatory targets of CHD8 are strongly enriched for genes both associated with ASD and implicated in neuronal and developmental pathways that con-trol synapse formation (Cotney et al. 2015; Sugathan et

and developmental pathways that con-trol synapse formation (Cotney et al. 2015; Sugathan et al. 2014).

Indeed, while clear evidence exists for the role of synaptic proteins and chromatin remodelers in the pathophysiology of ASD, a polygenic, com-plex disorder such as ASD likely results from disruptions in multiple distinct biological path-ways. Studies of genetic regulatory networks in ASD have demonstrated the potential for future diagnostic and therapeutic targets through the convergence of ASD-risk genes in biological pathways related to neuronal development, kinase signaling cascades, as

genes in biological pathways related to neuronal development, kinase signaling cascades, as well as brain-expressed genes (Geschwind and State 2015). Rare gene-disruptive events in ASD have further been shown to occur in genes found to interact with the neuronal RNA-binding protein known as frag-ile X mental retardation protein, or FMRP-associated genes (Darnell et al. 2011; Iossifov et al. 2012; Pinto et al. 2014). The significant enrichment of FMRP targets among ASD risk genes further

2012; Pinto et al. 2014). The significant enrichment of FMRP targets among ASD risk genes further emphasizes the role of proper human adaptation, neuroplasticity, and synaptic function in protecting against the development of ASD.

In keeping with the theory that ASD-associated genes may form functional networks or clusters, convergence may exist across diverse biological functions, but in a highly specific developmental context. Indeed, a large number of genes that gave rise to the significant signal for enrichment among chromatin and transcrip-tion regulators involved genes with a prenatal expression profile (Pinto et al. 2014). Using data from the BrainSpan atlas, one study demonstrated highly significant findings for the

Using data from the BrainSpan atlas, one study demonstrated highly significant findings for the convergence of coexpression networks harboring ASD-associated genes underlying the proper function of deep-layer glutamtergic cortical projection neurons in two overlapping periods of midfetal human devel-opment corresponding to 10–24 post-conception weeks (Willsey et al. 2013). Such a result high-lights the promise that clues about the pathophys-iological mechanisms implicated in ASD may exist not

the promise that clues about the pathophys-iological mechanisms implicated in ASD may exist not just in shared biological functions but also in shared cell types or developmental timeframes.

Path of Physiology Narrow-sense heritability estimates for ASD range from 17% to 50%, with such wide discrep-ancies likely derived from differences in study design, cohort composition (e.g., simplex vs. multiplex families), sample size, and ascertain-ment bias. Though as previously discussed, a population-based study suggested that narrow-sense heritability is roughly 52% for ASD, with most of the total heritability explained by com-mon variation and only a small fraction attribut-able to rare

total heritability explained by com-mon variation and only a small fraction attribut-able to rare de novo mutations (Gaugler et al. 2014; Klei et al. 2012). However, though these de novo events con-tribute modestly to the variance in liability for ASD, de novo carrier status determined affected status for ASD in 80% of de novo CNV carriers and 57% of de novo LGD carriers (Gaugler et al. 2014). A separate study of the genomic risk loci underlying ASD found that roughly 70% of de novo CNVs and

A separate study of the genomic risk loci underlying ASD found that roughly 70% of de novo CNVs and 46% of de novo LGD mutations carried ASD risk, with both estimates higher among females than males (Sanders et al. 2015). Of individuals affected with ASD, multi-ple studies estimate the contribution of de novo CNVs and/or de novo SNVs in mediating ASD risk at roughly 10% (Iossifov et al. 2012; Sanders et al. 2015).

Phenotypically, deviations in head circumfer-ence in either direction, a history of seizures, and the presence of an unaffected sibling in the family all increased the mutational burden of a de novo event. While several studies have demonstrated a significant increase in ASD risk with increased paternal age (De Rubeis et al. 2014; Dong et al. 2014; Iossifov et al. 2012; O’Roak et al. 2012; Saha et al. 2009; Sanders et al. 2012), other stud-ies did not observe such a difference with either a

et al. 2009; Sanders et al. 2012), other stud-ies did not observe such a difference with either a higher paternal or maternal age (Sanders et al. 2015). Additionally, investigations of the genetic risk architecture of ASD, particularly the demon-strated convergence of genomic risk loci in regu-latory networks associated with synaptic function, have shown that common genetic mechanisms may underlie frequently comorbid disorders such as intellectual disability (ID), schizophrenia, developmental

frequently comorbid disorders such as intellectual disability (ID), schizophrenia, developmental delay, and epilepsy (De Rubeis et al. 2014; Sanders et al. 2015; Zoghbi and Bear 2012).

See Also * Genetics  General Anxiety Lindsey Sterling1 and Jeffrey J. Wood2 1Department of Psychiatry, Jane and Terry Semel Institute for Neuroscience and Human Behavior UCLA, Los Angeles, CA, USA
2Departments of Psychiatry and Education, UCLA/Geffen School of Medicine, UCLA Center for Autism Research and Treatment, University of California, Los Angeles, CA, USA

Synonyms * GAD  Short Description or Definition General anxiety, or generalized anxiety disorder (GAD), is marked by excessive anxiety and worry occurring more days than not for at least 6 months, about a number of events or activities (DSM-IV-TR; American Psychiatric Association [APA] 2000). Individuals suffering from general anxiety commonly experience distress with accompany-ing disturbances of sleep, concentration, and social or occupational/academic functioning.

Categorization Diagnostic criteria for GAD as defined by the DSM-IV-TR (APA 2000) are as follows: (a) Excessive anxiety and worry that occur more days than not for at least 6 months, about a variety of events, circumstances, or activities (such as work or school performance). (b) The worry is difficult for the person to control. (c) The anxiety and worry are associated with three or more (in children, one or more) of these six symptoms (with at least some symp-toms present for more days than not

one or more) of these six symptoms (with at least some symp-toms present for more days than not for the past 6 months): restlessness or feeling keyed up or on edge, being easily fatigued, difficulty concentrating or mind going blank, irritability, muscle tension, and sleep disturbance (difficulty falling or staying asleep, or restless unsatisfying sleep). The diagnostic criteria for GAD apply to indi-viduals with ASD; however, it is important to con-sider that symptoms may be qualitatively

to indi-viduals with ASD; however, it is important to con-sider that symptoms may be qualitatively different with variable behavioral manifestations within the context of an ASD (cf. Wood and Gadow 2010). For example, anxiety may be more associated with acting out behaviors in children with ASD than in typically developing children (White et al. 2009). Individuals with ASD often have limited insight or ability to express emotion (e.g., Hill et al. 2004), which may lead to frustration and

insight or ability to express emotion (e.g., Hill et al. 2004), which may lead to frustration and consequent act-ing out behaviors. Careful assessment is needed to determine whether observed behaviors reflect ASD, anxiety, disruptive behavior symptoms, or a combination thereof.

Epidemiology Anxiety disorders are prevalent among youth and adults with ASD. Specific phobias, social anxiety (social phobia), and GAD are common subtypes. Epidemiological reports of large and/or national samples indicate that anxiety disorders in typical youth range from 10% to 20% (Achenbach et al. 1998; Shaffer et al. 1996). An early study indi-cated that approximately 4.9% of typical adoles-cents met criteria for GAD at some point in their lives (Whitaker et al. 1990). Symptoms of anxiety

met criteria for GAD at some point in their lives (Whitaker et al. 1990). Symptoms of anxiety may be the most com-mon associated psychiatric concern among indi-viduals with ASD (Skokauskas and Gallagher 2010) and occur so frequently that they are some-times assumed to be a component of the disorder. In fact, in many cases, it is difficult to distinguish between symptoms of anxiety and ASD (see below: Part H. Evaluation and Differential Diag-nosis). Comorbid anxiety disorders are reported in

below: Part H. Evaluation and Differential Diag-nosis). Comorbid anxiety disorders are reported in 11–84% of youth with ASD (e.g., Sukhodolsky et al. 2007), which is more common than in typ-ically developing youth, youth with conduct dis-order, and even some otherwise typical clinically anxious youth.

Natural History, Prognostic Factors, and Outcomes Individuals with general anxiety tend to report a slow, gradual onset of chronic worry rather than a sudden manifestation of symptoms. Children who have general anxiety have reported that greater impairment is associated with intensity of worries, number of associated symptoms (e.g., restlessness, trouble concentrating), and number of worry domains (e.g., school, family); according to clinicians, greater impairment is associated with intensity

(e.g., school, family); according to clinicians, greater impairment is associated with intensity of worries, number of associated symptoms, and number of comorbid DSM-IV disorders (Layne et al. 2009). If not treated properly, anxiety disorders in youth pre-dict adult anxiety disorders; more than half of adults with anxiety and mood disorders had a history of a childhood anxiety disorder (Ferdinand and Verhulst 1995; Kessler et al. 1994). Some youth with anxiety disorders may experience

and Verhulst 1995; Kessler et al. 1994). Some youth with anxiety disorders may experience fluctuation or a remission of symp-toms, but more often, childhood anxiety disor-ders are chronic and precede anxiety or mood disorders later in life (Keeton et al. 2009). In terms of vulnerability factors for developing anx-iety, evidence suggests that being female, having high trait anxiety, and significant life events pre-dict presence of chronic anxiety in adulthood (de Beurs et al. 2000).

Family liability, temperament, and environ-mental factors may also contribute to the devel-opment of GAD. In a large community sample, GAD in adulthood was associated with parental GAD, high behavioral inhibition, exposure to childhood separation events, and parental over-protection (Beesdo et al. 2010). High emotional-ity and shy temperament are prominent features in teens with anxiety as well as their parents and siblings (Masi et al. 2003). As well, offspring of anxious parents have a

well as their parents and siblings (Masi et al. 2003). As well, offspring of anxious parents have a significantly greater chance of developing an anxiety disorder (Micco et al. 2009). Common traits in parents and siblings suggest a shared genetic liability for the development of anxiety disorders. In fact, a meta-analysis of available twin studies estimated a heritability rate of 0.32 for GAD (Hettema et al. 2001). Similarly, it has been suggested that maternal mood symptoms, such as

GAD (Hettema et al. 2001). Similarly, it has been suggested that maternal mood symptoms, such as interpersonal sensitiv-ity, hostility, phobic anxiety, depression, and anxiety, may be related to depression and anxiety in youth with ASD (Mazefsky et al. 2010). High rates of psychopathology in first-degree relatives of individuals with ASD may suggest a common genetic liability to develop ASD and disorders such as anxiety. In fact, it has been proposed that a multigenic form of inheritance (i.e.,

such as anxiety. In fact, it has been proposed that a multigenic form of inheritance (i.e., involving multiple genes) results in a “lesser variant” of ASD in some individuals, manifesting with anx-ious and obsessive traits rather than the full-blown disorder (Wilcox et al. 2003). The lesser variant has also been referred to as the “broad autism phenotype,” which comprises a constel-lation of subtle social and communication impairments, in addition to increased rates of psychopathology, in some

social and communication impairments, in addition to increased rates of psychopathology, in some relatives of individ-uals with ASD (e.g., Bolte et al. 2007). Higher rates of depression and anxiety in nonautistic relatives of individuals with ASD do not appear to be accounted for by the stress of raising a child (or children) with autism, providing further sup-port for common genetic substrates (Piven and Palmer 1999).

Clinical Expression and Pathophysiology Clinical features. Individuals with GAD are char-acterized by excessive fears and worries about a range of issues, such as natural disasters, illness, or the future. Common domains of worry among children include school performance, the health of significant others, minor daily events (e.g., saying the wrong thing), social status, family concerns, and natural phenomena (Layne et al. 2009; Masi et al. 2004). In addition to persistent worry, youth with GAD

phenomena (Layne et al. 2009; Masi et al. 2004). In addition to persistent worry, youth with GAD experience other difficulties including restlessness and trouble relaxing, trouble concen-trating and attending, and trouble sleeping (Layne et al. 2009). It is common for youth to seek exces-sive reassurance, respond negatively to routine criticism and evaluation, have a negative self-image, experience irritability, and have physical complaints (DSM-IV-TR; Masi et al. 2004). Such difficulties can

irritability, and have physical complaints (DSM-IV-TR; Masi et al. 2004). Such difficulties can cause significant distress and may interfere with school performance, the develop-ment and maintenance of peer relationships, and family functioning (e.g., by leading to conflict).

Relation to gender. In a large prospective com-munity cohort of youth followed from late child-hood to late adolescence, girls were more likely to have all types of anxiety than boys (Van Oort et al. 2009). This is consistent with previous findings indicating that GAD is more commonly reported in girls, and the gender difference is present by late childhood. Despite the gender disparity, boys and girls with GAD appear to have similar num-bers and types of symptoms (Masi et al. 2004).

Relation to age. Due to the gradual onset of chronic worry, it can sometimes be difficult to determine the exact age when symptoms develop. However, available evidence suggests GAD has an average age of onset of 8.5 years (Masi et al. 2004) and symptoms may increase in middle ado-lescence (Van Oort et al. 2009). It can be diag-nosed as early as symptoms of worry can be verbalized by children or inferred with confidence by parents. Though core ASD symptoms may improve as youth with ASD enter

or inferred with confidence by parents. Though core ASD symptoms may improve as youth with ASD enter adolescence (Seltzer et al. 2004), some individuals with ASD experience greater risk for the development of psychopathol-ogy at this time. Compared to their typically developing peers, increased rates of psychopa-thology, including anxiety and depression, have been reported by adolescents with ASD, as well as their teachers and parents (Hurtig et al. 2009). It may be that increased awareness of

as well as their teachers and parents (Hurtig et al. 2009). It may be that increased awareness of their own challenges and the complex social milieu of ado-lescence exacerbate anxiety in ASD (White et al. 2009).

Relation to cognitive functioning and verbal ability. Although anxiety symptoms are present among individuals with ASD who have a range of cognitive functioning, the type of anxiety may vary depending on cognitive and verbal ability. For example, in higher functioning youth, anxi-eties can be better articulated and may consist of persistent worrying about performance or that something bad might happen; in youth with less verbal capacity, anxiety may manifest more behaviorally, such as

might happen; in youth with less verbal capacity, anxiety may manifest more behaviorally, such as reluctance to change a rou-tine in order to avoid a novel situation. Evidence does suggest that anxiety is more common in higher functioning youth, such as those with Asperger syndrome (e.g., Gadow et al. 2005); however, such findings may reflect better ability to verbally report and express psychiatric symptoms.

Relation to other problems. Pediatric anxiety disorders in typically developing youth predict other childhood sequelae such as substance abuse problems, suicide attempts, and hospitali-zation (e.g., Kendall et al. 2004). Anxiety disor-ders have also been associated with significant functional impairment, behavioral problems, and heightened symptomatology in youth with ASD. For example, higher parent-rated anxiety in youth with ASD was associated with greater impairment in social responsiveness

anxiety in youth with ASD was associated with greater impairment in social responsiveness (Sukhodolsky et al. 2007) and social skills deficits (Bellini 2004). Several large studies of children with ASD have found strong linkages between high anxiety and increased severity of ASD symptoms such as repetitive behaviors (e.g., Sukhodolsky et al. 2007), sensory symptoms (Ben-Sasson et al. 2008), and total ASD symptoms even when con-trolling for intellectual impairment, social malad-justment, and

total ASD symptoms even when con-trolling for intellectual impairment, social malad-justment, and degree of speech impairment in a causal model (Kelly et al. 2008). Heightened fears and anxieties in youth with ASD have also been associated with more externalizing behavioral problems, including conduct, impulsivity, and hyperactivity (Evans et al. 2005). In another study of the pediatric ASD population, high levels of parent-rated anxiety were strongly associated with more loose associations in

high levels of parent-rated anxiety were strongly associated with more loose associations in a performance-based assessment of formal thought disorder (Solomon et al. 2008).

Pathophysiology. In terms of neuropathology, research indicates that the amygdala plays a pri-mary function in the development and expression of anxiety, given its role in processing emotional cues (e.g., Phelps and LeDoux 2005), particularly fearful stimuli. Youth with general anxiety tend to exhibit increased activation in neural fear cir-cuitry, including the amygdala, in response to fearful stimuli (e.g., McClure et al. 2007). Inter-estingly, abnormalities of the amygdala have also been

stimuli (e.g., McClure et al. 2007). Inter-estingly, abnormalities of the amygdala have also been implicated in the development and mainte-nance of social impairments (e.g., Baron-Cohen et al. 2000) and abnormal fears and high rates of anxiety in ASD (Amaral and Corbett 2003). In terms of neurobiological vulnerability, the seroto-nin transporter gene has been implicated in a number of anxiety disorders as well as in ASD.

Evaluation and Differential Diagnosis Evaluation. As summarized by Keeton et al. (2009), three primary aspects of anxiety are eval-uated during diagnostic assessment: anxious behaviors, thoughts, and physical symptoms (Keeton et al. 2009). In terms of behavior, clini-cians observe and probe for avoidant behavior and its functional impact on daily activities. It is also important to identify thought patterns related to the child’s anxiety. Youth with general anxiety may report more worries, ask

patterns related to the child’s anxiety. Youth with general anxiety may report more worries, ask more questions (e.g., reassurance seeking), and have more thoughts reflecting concerns about performance. Older children and adolescence may be able to articulate their thoughts and worries, whereas age-appropriate approaches (e.g., use of car-toons/pictures, thought bubbles) may be required to facilitate description of thoughts and feelings in younger children. Physical symptoms, including

facilitate description of thoughts and feelings in younger children. Physical symptoms, including headaches, gastrointestinal problems, dizziness, and restlessness, are common among youth with anxiety disorders. It can be helpful for a physician to rule out medical problems before assessing for an anxiety disorder. During the assessment for anxiety, clinicians should review ways in which physical symptoms may interfere with daily func-tioning, such as sleep, appetite, and school perfor-mance. A

symptoms may interfere with daily func-tioning, such as sleep, appetite, and school perfor-mance. A thorough clinical evaluation would include assessment of other psychiatric concerns as well as family mental health history, and dis-cussion (and perhaps observation) of the child’s functioning in different contexts (e.g., school, social, and home).

Anxiety is commonly assessed through clinical interview and rating scales from parents/caregivers, children, and teachers, following a multi-informant, multimethod approach. Semi-structured diagnostic interviews, such as the Kid-die Schedule for Affective Disorders and Schizophrenia (KSADS; Ambrosini 2000) and the Anxiety Disorder Interview Schedule (ADIS; Silverman and Albano 1996), have parent and child versions to allow for consensus scoring. Rating scales, such as the Multidimensional

and child versions to allow for consensus scoring. Rating scales, such as the Multidimensional Anx-iety Scale for Children (MASC), Screen for Child Anxiety Related Emotional Disorders (SCARED), the Revised Child Anxiety and Depression Scale (RCADS), and the Pediatric Anxiety Rating Scale (PARS), also have parent and child versions and correspond to DSM-IV criteria for anxiety disorders. Because few measures to assess anxiety have been developed and validated for use with indi-viduals with ASD

few measures to assess anxiety have been developed and validated for use with indi-viduals with ASD (one exception: the parent-report Childhood Anxiety Sensitivity Index; CASI), clinicians and researchers tend to utilize the same measures as those used in the typical population. Despite the utility of these measures in documenting the presence of anxiety in youth with ASD, it is important to note that symptoms of anxiety may manifest differently in youth with ASD; moreover, dependence on child

that symptoms of anxiety may manifest differently in youth with ASD; moreover, dependence on child and parent report to evaluate anxiety can be problematic in ASD. Individuals with ASD are often character-ized by diminished ability to think abstractly or communicate effectively through speech or facial expression and often lack awareness of internal states or motivation to report symptoms (Lainhart and Folstein 1994). Research has shown that chil-dren with ASD provide less coherent

(Lainhart and Folstein 1994). Research has shown that chil-dren with ASD provide less coherent representa-tions of emotional experiences than their typical peers (Losh and Capps 2006). Children may not verbally express their feelings and worries to par-ents, and internalizing symptoms are not always easily observed by caretakers (Kuusikko et al. 2008). When evaluating possible anxiety symp-toms in youth with ASD, it is important that a skilled clinician, familiar with both ASD and gen-eral

in youth with ASD, it is important that a skilled clinician, familiar with both ASD and gen-eral anxiety, interpret child report, parent report, and observed behaviors with these considerations in mind.

Using a modified version of the Kiddie Sched-ule for Affective Disorders and Schizophrenia (Geller et al. 1996), Leyfer and colleagues devel-oped and piloted the Autism Comorbidity Interview-Present and Lifetime Version (ACI-PL) (Leyfer et al. 2006). Based on the ACI-PL, 44% of children in the study had specific phobia, which is much higher than rates found in typically developing children and adolescents. Interestingly, generalized anxiety disorder occurred at low rates in the ASD group (2%;

Interestingly, generalized anxiety disorder occurred at low rates in the ASD group (2%; Leyfer et al. 2006). Higher rates of anxiety disor-ders have been reported in other studies (e.g., 84% using the Diagnostic Interview Schedule for Chil-dren; Muris et al. 1998), suggesting that different assessment approaches may yield variable rates.

Differential diagnosis. General anxiety rarely occurs in isolation; in a sample of 157 children and adolescents, another psychological disorder was present in 93% of the patients (Masi et al. 2004). GAD can have a similar clinical presenta-tion as other anxiety disorders, including panic disorder, social phobia, separation anxiety disor-der (SAD), and obsessive-compulsive disorder (OCD). Some symptoms also overlap with depression (as well as the basic pattern of rumina-tive thought), and the

also overlap with depression (as well as the basic pattern of rumina-tive thought), and the two disorders are highly comorbid in many samples. Symptoms of anxiety can also appear similar to symptoms and behav-iors associated with autism spectrum disorders (e.g., perseverative thought and speech).

Other anxiety disorders: In both typical and ASD populations, it is important to consider how symptoms of general anxiety might overlap with other anxiety disorders. Masi et al. (2004) reported that comorbid anxiety disorders were present in 75% of the youth in their sample of youth with GAD (Masi et al. 2004). It can be difficult to make the distinction between panic disorder and GAD, especially when individuals with general anxiety experience acute situational or anticipatory anxiety (i.e.,

when individuals with general anxiety experience acute situational or anticipatory anxiety (i.e., heightened anxiety in certain situations); this can be particularly chal-lenging in youth with ASD, who reportedly have more fears related to “specific situations” (Evans et al. 2005). One distinguishing factor is that panic attacks do not generally occur with preceding generalized anxiety (Rickels and Rynn 2001). General anxiety commonly overlaps with social phobia as well. Individuals with social

Rynn 2001). General anxiety commonly overlaps with social phobia as well. Individuals with social phobia exhibit phobic avoidant behavior that is specific to a social situation, whereas someone diagnosed with GAD may have “free-floating” anxiety (i.e., not restricted to particular circumstances) that contributes to feelings of apprehension, causing a person to be shy or uncomfortable in public (Rickels and Rynn 2001). Among youth with GAD, SAD has a high rate of overlap (e.g., 31.8%; Masi et al.

and Rynn 2001). Among youth with GAD, SAD has a high rate of overlap (e.g., 31.8%; Masi et al. 2004) and tends to precede the onset of GAD. Youth who have both SAD and GAD tend to be younger, report more physi-cal symptoms, and have a higher incidence of panic disorder than youth with GAD alone. It can also be difficult to discriminate between OCD and general anxiety, and the two disorders frequently co-occur (see Comer et al. 2004 for review). OCD is characterized by excessive recur-rent

co-occur (see Comer et al. 2004 for review). OCD is characterized by excessive recur-rent thoughts (i.e., obsessions) and sometimes accompanied by repetitive and purposeful behav-ioral attempts to reduce the anxiety (i.e., compul-sions; DSM-IV-TR). Such symptoms can be easily confused with GAD when it is unclear whether a child’s recurrent thoughts reflect true, irrational obsessions or more general worrying.

Depression: Anxiety and depression are highly comorbid, and depressive disorders may occur in over half of typical youth with GAD (Masi et al. 2004). The presence of depressive symptoms may cause increased interference with daily activities and more functional impairment and predict worse outcome in individuals with GAD. Evidence also suggests that anxiety disor-ders may precede and be a risk factor for the development of depression later in life (Beesdo et al. 2010).

ASD: Symptoms of anxiety and ASD may have similar overt manifestations in some cases, making it difficult to interpret behaviors and deter-mine whether they reflect symptoms of anxiety or ASD. For example, avoidance of unfamiliar situ-ations is a commonly observed feature of ASD and general anxiety even though underlying symptom composition and motivating factors may differ (e.g., lack of interest vs. anxious appre-hension). As a second example, many individuals with ASD are sensitive to sensory

vs. anxious appre-hension). As a second example, many individuals with ASD are sensitive to sensory stimuli such as loud noises; similarly, individuals with general anxiety may have a heightened “startle response” or reaction to sudden loud sounds. Third, persis-tent, repetitive thought (and associated speech) characterizes both ASD and GAD for many indi-viduals: in the former case, often taking the form of perseverative “special” interests, and in the latter case, worry and catastrophizing.

the form of perseverative “special” interests, and in the latter case, worry and catastrophizing. Although the affective content often differs, the inability to shift attention away from specific thoughts is common to both ASD and GAD (Wood and Gadow 2010). It is important to consider the pos-sibility that anxiety symptoms are present and are not accounted for by symptoms expected to occur as part of an ASD. “Diagnostic overshadowing” of psychiatric problems by developmental disabil-ities (Davis

of an ASD. “Diagnostic overshadowing” of psychiatric problems by developmental disabil-ities (Davis et al. 2008; Reiss 1982) may tend to obscure anxiety disorders in youth with ASD such that clinicians may conceptualize anxiety symp-toms as falling under the umbrella of ASD criteria when in fact they represent a coexisting anxiety disorder. In recent years, mounting evidence has suggested that many individuals with ASD do have a coexisting anxiety disorder (e.g., Leyfer et al. 2006); however,

individuals with ASD do have a coexisting anxiety disorder (e.g., Leyfer et al. 2006); however, more work needs to be done to develop accurate ways of assessing for anxiety in this population.

Treatment Treatment for general anxiety in children should ideally involve parents as well as the child. Depending on the individual characteristics of the child and the treatments available to families, children with general anxiety may benefit from behavioral intervention, medication, or a combi-nation of both.

Behavioral treatments (CBT). There is an abundance of evidence indicating that cognitive-behavioral therapy (CBT) is effective (e.g., Walkup et al. 2008); it is considered the treatment of choice for pediatric anxiety. Numerous ran-domized controlled trials conducted with children have demonstrated that CBT is efficacious and significantly decreases remission rates (e.g., Cartwright-Hatton et al. 2004). Manualized CBT programs, such as the Coping Cat program (Kendall 2000), have been used

al. 2004). Manualized CBT programs, such as the Coping Cat program (Kendall 2000), have been used extensively with anxious youth. The CBT approach assumes that pathological anxiety reflects the interaction between cognitive distortions, somatic or physio-logical arousal, and avoidance of fearful stimuli. As such, therapists help children identify beliefs and thought patterns that may be irrational and unrealistic and replace them with rational or real-istic perspectives (i.e., cognitive

and unrealistic and replace them with rational or real-istic perspectives (i.e., cognitive restructuring). Other components of CBT usually include psychoeducation with children and parents, prob-lem solving, relaxation training and techniques to manage physiological arousal, modeling, and imaginary or in vivo exposure to increasingly anxiety-provoking stimuli. Intervention should also include strategies to maintain treatment gains and prevent relapse.

Cognitive-behavioral therapy must be tailored to the developmental level of the child, including cognitive capacity (Sauter et al. 2009). This is especially relevant when treating symptoms of anxiety in youth with ASD. Recent evidence sug-gests modified CBT can effectively target symp-toms of anxiety in children with ASD, particularly when a parent component is included (Chalfant et al. 2007; Reaven 2009; White et al. 2009; Wood et al. 2009). For example, Wood’s manualized CBT intervention for

2009; White et al. 2009; Wood et al. 2009). For example, Wood’s manualized CBT intervention for youth with comorbid ASD and anxiety (Wood et al. 2009) incorporates par-ents into each of the weekly treatment sessions; parents then implement strategies at home to facil-itate generalization. Symptoms of anxiety are addressed using core components of CBT, such as hierarchical exposure therapy techniques. However, to address developmental level, social challenges, and other unique characteristics

However, to address developmental level, social challenges, and other unique characteristics asso-ciated with having an ASD, modifications are made to the intervention. For instance, therapeutic concepts are taught using multimodal stimuli (e.g., discussion scaffolded by drawing or writ-ing), and concrete examples are provided rather than abstract descriptions of symptoms and cog-nitive processes. Children’s special interests may be used as metaphors to maintain enthusiasm and motivation. In

Children’s special interests may be used as metaphors to maintain enthusiasm and motivation. In Wood’s manualized intervention, youth and parents are also taught friendship skills, which are practiced at school, in the community (e.g., playgrounds), and on playdates and sleep-overs. In addition to the amelioration of anxiety symptoms, improvement in parent-reported core autism symptoms has been reported in children receiving CBT for anxiety compared to children in a waitlist group (Wood et al.

in children receiving CBT for anxiety compared to children in a waitlist group (Wood et al. 2009). This sug-gests identification and appropriate treatment of associated symptoms of anxiety can impact core symptoms of autism, thereby improving global functioning.

Pharmacological treatments. Selective seroto-nin reuptake inhibitors (SSRIs) have been established as the most effective pharmacological approach for children with general anxiety. For example, in a randomized, double-blind compar-ison of an SSRI (fluvoxamine) and placebo in youth between the ages of 6–17, the SSRI was significantly more effective in reducing anxiety symptoms (Walkup et al. 2001). Nevertheless, there is limited information on the long-term safety of medication use in youth with

Nevertheless, there is limited information on the long-term safety of medication use in youth with anxiety, and this remains a continued focus of research. Available evidence does point toward the efficacy of both CBT and treatment with SSRI, with recent findings suggesting that combination of the two approaches provides maximum benefit (Walkup et al. 2008).

Although pharmacological treatments have not demonstrated consistent efficacy in treating core symptoms of ASD, it is possible that medications, including SSRIs, can ameliorate associated psy-chiatric symptoms (e.g., Kolevzon et al. 2006). The appropriate use of medications that help reg-ulate emotion in ASD might theoretically facili-tate a child’s capacity to benefit from educational and behavioral modification interventions. How-ever, clinical trials need to be conducted to deter-mine whether

modification interventions. How-ever, clinical trials need to be conducted to deter-mine whether pharmacological approaches effectively target anxiety in this population.

See Also * Cognitive Behavioral Therapy (CBT) * Separation Anxiety Disorder  General Case Analysis * General Case Programming (GCP)  General Case Model * General Case Programming (GCP)  General Case Programming (GCP) Mark Groskreutz Special Education and Reading Department, The Center of Excellence on Autism Spectrum Disorders, Southern Connecticut State University, New Haven, CT, USA

Synonyms * General case analysis * General case model * Training the general case  Definition General case programming is an instructional pro-cess with the ultimate goal of increasing the like-lihood that a learner will generalize a skill set (i.e., target behavior) learned during structured teach-ing situations to relevant real-world settings and situations in which the target behavior should be demonstrated. General case programming can be broken into three phases: design, implementation,

be demonstrated. General case programming can be broken into three phases: design, implementation, and assess-ment. The design phase is key to general case programming and begins with analysis of the tar-get skill to be taught. The instructor must identify the essential behaviors and all variations of those behaviors that are necessary for successful perfor-mance of that skill in relevant situations. The instructor must also consider and identify the full range of stimuli that may be

situations. The instructor must also consider and identify the full range of stimuli that may be encountered when the learner engages in the target skill in real-world settings. After analysis of the relevant behaviors and stimuli, the instructor can select teaching materials that encompass as many of the behav-ioral and stimulus variations as possible. To reduce the likelihood of overgeneralization (engaging in the target behavior in inappropriate situations), the instructor must also identify

(engaging in the target behavior in inappropriate situations), the instructor must also identify mate-rials that share some, but not all, characteristics with the target skill materials and ensure the learner does not engage in the target skill inappro-priately. During the implementation phase, the instructor exposes the learner to the selected mate-rials and teaches the relevant behaviors using teaching strategies appropriate for the learner (see Horner et al. 1982, 1986; Horner and Albin 1988

strategies appropriate for the learner (see Horner et al. 1982, 1986; Horner and Albin 1988 for recommendations on presentation order of examples). Implementation continues until the learner demonstrates success with at least one set of materials. In the assessment phase, the learner is exposed to untaught examples to test for gener-alization. If necessary, additional sets of materials can be used during subsequent teaching sessions until the learner shows generalization or is taught the full

during subsequent teaching sessions until the learner shows generalization or is taught the full variety of relevant responses including the full variety of materials. In sum, general case programming is an instructional process that is designed to increase the efficiency of teaching and subsequent likeli-hood of generalization of new skills. General case programming is based on thorough analysis of target skills sets and selection of materials that include the full variations in behaviors and

of target skills sets and selection of materials that include the full variations in behaviors and mate-rials likely to be encountered in real-world situations.

See Also * Generalization and Maintenance  General Health Questionnaire (GHQ-12) * Autism Family Experience Questionnaire (AFEQ), The  General Health Questionnaire-12 (GHQ-12) * Autism Family Experience Questionnaire (AFEQ)  Generalization and Maintenance Brooke Ingersoll1 and Allison Wainer2 1Department of Psychology, Michigan State University, East Lansing, MI, USA 2Department of Psychiatry, Rush Medical College, Chicago, IL, USA  Definition The term generalization, defined most broadly

Rush Medical College, Chicago, IL, USA  Definition The term generalization, defined most broadly (Stokes and Baer 1977), is used to describe when skills learned in a training environment transfer to the natural environment after training has ended. Generalization, in its more narrow definition, is a behavioral term that is used to describe the spread of effect of a training proce-dure to untrained stimuli and responses, as well as the durability of treatment effects over time. Generalization

stimuli and responses, as well as the durability of treatment effects over time. Generalization includes three specific forms: Stimulus generalization, response generalization, and maintenance. Stimulus generalization involves the occurrence of a behavior in response to another similar stimulus. For example, a child who learns to say “ball” (behavior) in response to a picture of a ball (trained stimulus) shows stimulus generalization if he says “ball” in response to an actual ball (new

stimulus) shows stimulus generalization if he says “ball” in response to an actual ball (new stimulus). Response generalization involves the spread of an effect of a trained response to other similar responses. For example, a child who is taught to greet another person by saying “Hi,” also begins to greet people by waving. Maintenance involves the continued use of a trained behavior over time, after the direct intervention period has ended. An important outcome of any intervention is that its

the direct intervention period has ended. An important outcome of any intervention is that its effects generalize to similar stimuli outside of the treatment setting. Without generalization, the ability to use a given skill may be confined to a highly specific environment or stimulus, and thus is not particularly valuable for use in real-world contexts. For individuals with ASD, generalizing skills to new settings, new people, or in response to new events can be especially challenging. In

skills to new settings, new people, or in response to new events can be especially challenging. In addition, it is important that the effects of inter-vention lead to generalized responding, such that training in one behavior leads to the development of a variety of related behaviors without direct training; otherwise, training is inefficient and leads to an inflexible pattern of behavioral responses. Further, it is critical that gains made in treatment be maintained over time, after the

responses. Further, it is critical that gains made in treatment be maintained over time, after the intervention is complete. Individuals with ASD may show deficits in skill maintenance, in part, because the types and patterns of reinforce-ment in the real world are often divergent from those employed in treatment settings. As such, for individuals with ASD, newly acquired skills may extinguish rather quickly in extra-therapy contexts.

It has been suggested that without targeted intervention, generalization and maintenance of skill does not occur automatically for individuals with ASD (Koegel and Rincover 1977). Some have suggested that these difficulties may be related to an insistence of sameness, stimulus over-selectivity, and/or lack of motivation in indi-viduals with ASD (Arnold-Saritepe et al. 2009). While the etiology of these deficits remain unclear, it is obvious that without the ability to translate knowledge to

of these deficits remain unclear, it is obvious that without the ability to translate knowledge to various contexts, an indi-vidual will continue to experience impairment in important areas of functioning. As such, it is crit-ical that intervention programs incorporate spe-cific components to help encourage behavioral change outside of the direct therapy environment.

Historical Background Difficulty with treatment generalization and main-tenance for children with autism was identified as early as 1973 by Lovaas and colleagues, who noted that children in their study of intensive behavioral intervention who returned to an insti-tutional setting lost the majority of their treatment gains; however, children who returned to live with their parents who had been trained to carry out the intervention at home continued to make gains. Historically, generalization was

to carry out the intervention at home continued to make gains. Historically, generalization was conceptual-ized as a passive process that was a natural con-sequence of the inability to effectively utilize stimulus discrimination. It was thought that if generalization did not occur, an individual had been successfully taught to discriminate among specific stimuli and responses. Stokes and Baer (1977) were some of the first to argue that gener-alization is an active process and that it should be

were some of the first to argue that gener-alization is an active process and that it should be directly targeted as a teaching outcome. In this way, “generalization may be claimed when no extratraining manipulations are needed for extratraining changes; or may be claimed when some extra manipulations are necessary, but their cost or extent is clearly less than that of the direct intervention” (Stokes and Baer 1977). In sum, an intervention can be considered effective when relevant targeted

(Stokes and Baer 1977). In sum, an intervention can be considered effective when relevant targeted behaviors are observed in untrained environments (e.g., across subjects, settings, people, behaviors, and/or time) without the same schedule of prompting and rein-forcement utilized in training conditions (Stokes and Baer 1977).

Building off this idea of generalization as an active process, Stokes and Baer (1977) suggested that treatments should directly target general-ization and maintenance by incorporating “generalization-promotion” techniques into inter-vention protocols. In an initial review of the gen-eralization literature, these authors described several “generalization-promotion” techniques that were being utilized to track and target gener-alization. These techniques were categorized into nine groups: 1.

to track and target gener-alization. These techniques were categorized into nine groups: 1. Train and Hope: These procedures document the presence or absence of generalization but do not explicitly target the generalization process. 2. Sequential Modification: Such procedures involve the implementation of intervention techniques and the probing for generalization. If generalization is not observed, the proce-dures are systematically altered to determine and then use the techniques that are most

the proce-dures are systematically altered to determine and then use the techniques that are most effec-tive for promoting generalization. 3. Introduce to Natural Maintaining Contingen-cies: This process relies on incorporating into the treatment program, circumstances and rein-forcement that are natural to the behaviors being taught. In this way, the reinforcement and consequences that are used in treatment are the same, or very similar to, those which are available in real-world contexts. 4.

in treatment are the same, or very similar to, those which are available in real-world contexts. 4. Train Sufficient Exemplars: These procedures involve teaching with several different exam-ples of the same lesson until an individual is able to generalize sufficiently across related conditions and responses. 5. Train Loosely: This process relies on incorpo-rating variety into the teaching conditions, set-tings, stimuli, and responses in order to mirror real-world situations. 6. Use

conditions, set-tings, stimuli, and responses in order to mirror real-world situations. 6. Use Indiscriminable Contingencies: This pro-cess depends on the use of intermittent rein-forcement, such that situations in which reinforcement would be expected are undistinguishable from those in which rein-forcement would not be expected. In this way, target behaviors should eventually occur across contexts, regardless of whether or not reinforcement is available. 7. Program Common Stimuli: Such

contexts, regardless of whether or not reinforcement is available. 7. Program Common Stimuli: Such procedures involve making the treatment context similar to the generalization context. Thus, the settings and stimuli utilized in training are the same or similar to those available to an individual in real-world contexts. 8. Mediate Generalization: This process relies on the incorporation of a particular stimulus (e.g., an object or a person) that is present in the training conditions and

a particular stimulus (e.g., an object or a person) that is present in the training conditions and generalization con-ditions. In this way, access to the mediating stimulus during generalization will prompt the individual to use the behaviors learned in the training condition. 9. Train to Generalize: These procedures involve giving an individual direct instruction to generalize, or reinforcing generalization as if it were a specific behavior.

Current Knowledge Although considerable individual variation exists with regards to the development of gener-alization and maintenance of skill, there is a significant body of research to indicate that cer-tain factors can be particularly beneficial in supporting these processes. Many of these fac-tors are based on the incorporation of the tech-niques described by Stokes and Baer (1977) into intervention programs. Currently, the literature indicates that implementing intervention in nat-ural

programs. Currently, the literature indicates that implementing intervention in nat-ural settings, using parents as intervention pro-viders, utilizing peer-mediated intervention, and self-management are especially effective in supporting the development of skill generaliza-tion and maintenance. Naturalistic Interventions: Some of the first effective intervention programs developed for individuals with ASD utilized a traditional behavioral approach, discrete trial training, which relies on a

with ASD utilized a traditional behavioral approach, discrete trial training, which relies on a highly structured and con-trolled learning environment. In such programs, the therapist and child usually sit face-to-face at a table with the therapist prompting the child for a series of discrete skills presented in successive trials. Child behavior is typically reinforced with food or access to a preferred toy. Discrete trial training has been shown to be effective for teach-ing a range of skills

toy. Discrete trial training has been shown to be effective for teach-ing a range of skills (e.g., Lovaas et al. 1973). However, results of these studies suggested lim-ited generalization of skill, especially in non-treating settings, with nontreatment therapists, and in the spontaneous use of the new skill. In fact, subsequent research has demonstrated that highly structured intervention environments and artificial reinforcers can limit the generalization and maintenance of newly acquired skill

and artificial reinforcers can limit the generalization and maintenance of newly acquired skill (Lovaas et al. 1973; Spradlin and Siegel 1982). As such, programs utilizing behavioral techniques directly in natural contexts have emerged in order to actively promote generalization during intervention. Naturalistic behavioral interven-tions use prompting and reinforcement but are implemented in natural settings (e.g., during play interactions or other daily routines) and utilize more natural

natural settings (e.g., during play interactions or other daily routines) and utilize more natural reinforcement (e.g., praise or the natural consequence of behavior). Examples of such programs include pivotal response training (PRT), incidental teaching, and milieu teaching. A significant amount of research has demon-strated that naturalistic behavioral techniques are effective at increasing verbal and nonverbal communication, play, imitation, and joint atten-tion (Schreibman et al. 2015).

verbal and nonverbal communication, play, imitation, and joint atten-tion (Schreibman et al. 2015). Importantly, research has also demonstrated that the use of these types of intervention techniques promote generalization of skill to untrained stimuli, set-tings, and interaction partners (e.g., Kaiser and Hester 1994). Several studies have compared naturalistic and traditional behavioral approaches for teaching specific language skills (e.g., preposition use, color adjectives) as well as broader

for teaching specific language skills (e.g., preposition use, color adjectives) as well as broader language functioning. Across studies, naturalistic behavioral approaches have been found to be superior to traditional behavioral approaches in terms of producing skill general-ization (Delprato 2001; Mohammadzaheri et al. 2014). As such, the literature indicates that the implementation of intervention in natural set-tings with natural reinforcement seems to be an especially effective way to

in natural set-tings with natural reinforcement seems to be an especially effective way to increase the general-ization and maintenance of skill for individuals with ASD.

Parents as Intervention Providers: A variation of implementing intervention in nat-ural contexts is to train parents as intervention providers. By training parents in intervention techniques, children are provided with increased access to intervention in more of their natural settings with their natural interaction partners. A growing body of literature suggests that par-ents can be successfully trained in a variety of intervention approaches to improve the quality of parent-child

successfully trained in a variety of intervention approaches to improve the quality of parent-child interactions, to produce gains in language skills, imitation skills, joint attention/ joint engagement, and appropriate play skills, and to decrease problem behavior in children with ASD (e.g., Bearss et al. 2015; Green et al. 2010; Kasari et al. 2010; Wetherby et al. 2014). Moreover, generalization and maintenance of skill was observed in the majority of these stud-ies; the children were able to

and maintenance of skill was observed in the majority of these stud-ies; the children were able to utilize variations of newly acquired skill in untrained environments, with untrained interaction partners, and in response to untrained stimuli. These results indi-cate that using parents as agents of change can lead to better generalization and maintenance of skill for individuals with ASD.

Peer-Mediated Intervention: Another way to promote generalization and maintenance in indi-viduals with ASD is to utilize peers in intervention programs. In this way, individuals with ASD can receive training in the classroom, the playground, and during daily routine interactions with same-age individuals. A number of studies have shown that typically developing children can be success-fully trained to directly implement, or support the implementation of, naturalistic intervention tech-niques

to directly implement, or support the implementation of, naturalistic intervention tech-niques to elicit changes in behavior from peers with ASD (e.g., Kasari et al. 2012; Kamps et al. 2015). Research has demonstrated that the utiliza-tion of multiple peer trainers can help promote generalization of skill, particularly social-communication skills, to untrained peers (Pierce and Schreibman 1997). Moreover, additional research has suggested that peer-mediated natu-ralistic interventions can

Moreover, additional research has suggested that peer-mediated natu-ralistic interventions can enhance generalization of skill to untrained environments, untrained stimuli, and untrained interaction partners, includ-ing siblings (e.g., Belchic and Harris 1994; Chang and Locke 2016).

Self-Management: Self-management, in which the individual is taught to monitor his own behav-ior and to provide self-reinforcement, has also been found to be successful for producing and maintaining improvements in appropriate social interaction and play skills in individuals with autism (Carr et al. 2014). With self-management, the individual’s behavior becomes under their own control, and thus the presence of a treatment provider is not necessary. This helps individuals generalize skills to

the presence of a treatment provider is not necessary. This helps individuals generalize skills to new environments and main-tain behavioral improvements over time in the absence of treatment providers. In order to utilize the techniques described above in an effective and ecologically valid way, one must first consider the individual receiving instruction. Different stimuli, responses, settings, and consequences are going to be relevant and reinforcing for a given individual. In order to

and consequences are going to be relevant and reinforcing for a given individual. In order to implement intervention to promote generalization and maintenance of skill, a thorough understand-ing of the individual and his or her needs is imperative.

Future Directions Although it has been identified that individuals with ASD experience difficulties with generaliza-tion and maintenance and that some teaching techniques are more effective than others for promoting these processes, the research on the application of these techniques continues to be limited. In a 2009 review of the intervention liter-ature, Arnold-Saritepe and colleagues found that more than 40% of entries did not evaluate or discuss generalization and maintenance. Thus, as a

more than 40% of entries did not evaluate or discuss generalization and maintenance. Thus, as a field, our understanding of the most effective ways to encourage generalization and mainte-nance is still somewhat restricted. It is important for researchers and clinicians to continue to uti-lize, explore, and expand upon the techniques described above in order to actively target gener-alization and maintenance of skills in individuals with ASD.

See Also * Parent Training * Peer-Mediated Intervention  Generalized Anxiety Disorder Ana Figueroa Quintana Child and Adolescent Psychiatry Unit, Hospital Perpetuo Socorro, Las Palmas, Spain

Synonyms * GAD  Short Description or Definition Generalized Anxiety Disorder does not go under any other denomination. The DSM-IV-TR includes Overanxious Disor-der of Childhood (DSM-III-R) in this category. Generalized Anxiety Disorder (GAD) is char-acterized by the presence of excessive and uncon-trollable worries about a number of life events such as weather, illnesses, natural disasters, risky situa-tions, failure, or the future. These worries are accompanied by at least three of the six

situa-tions, failure, or the future. These worries are accompanied by at least three of the six possible associated symptoms of negative affect/tension: restlessness, feeling keyed up, or on edge; easily fatigued; difficulty concentrating, mind going blank; irritability; muscle tension; and sleep distur-bance. Because usually one or more situations pro-voke these symptoms, the patient tends to avoid them. Avoidance behavior is a cardinal symptom of all anxiety disorders, including GAD. Due to

them. Avoidance behavior is a cardinal symptom of all anxiety disorders, including GAD. Due to their multiple and uncontrollable worries, the patient has a constant level of arousal and a sense of impending doom but does not develop panic attacks. Patients with GAD frequently emphasize the negative aspects, have unrealistic expectancies about the future, ask too many questions, feel inse-cure about their competencies, seek constant reas-surance, and respond negatively to ordinary criticism and

their competencies, seek constant reas-surance, and respond negatively to ordinary criticism and evaluation (Keeton et al. 2009). Physical symptoms (or somatic complaints) are common in patients with GAD: nausea, abdomi-nal pain, dizziness, headache, tachycardia, sweat-ing, etc. Many patients have previously visited other medical specialties to rule out medical problems. All these symptoms often interfere, sometimes severely, in the patient’s sleep, concentration, and eating habits; and they

interfere, sometimes severely, in the patient’s sleep, concentration, and eating habits; and they can alter his/her capacity for normal relationships (with peers and family). To meet diagnostic criteria, symptoms must pro-voke marked distress and interfere with social, emotional, or educational functioning (American Psychiatric Association [APA] 2000).

| Diagnostic criteria for DSM-IV generalized anxiety disorder | |:-----------------------------------------------------------| | (A) Excessive anxiety and worry (apprehensive expectation), occurring more days than not, for at least 6 months, about a number of events or activities (such as work or school performance) |

| (B) The person finds it difficult to control the worry | | (C) The anxiety and worry are associated with three (or more) of the following six symptoms (with at least some symptoms present for more days than not, for the past 6 months). Note: Only one item is required in children |

| (1) Restlessness, or feeling keyed up or on edge | | (2) Being easily fatigued | | (3) Difficulty concentrating or mind going blank | | (4) Irritability | | (5) Muscle tension | | (6) Sleep disturbance (difficulty falling or staying asleep, or restless unsatisfying sleep) |

| (D) The focus of the anxiety and worry is not confined to features of an Axis I disorder, for example, the anxiety or worry is not about: having a panic attack (as in panic disorder), being embarrassed in public (as in social phobia), being contaminated (as in obsessive-compulsive disorder), being away from home or close relatives (as in separation anxiety disorder), gaining weight (as in anorexia nervosa), having multiple physical complaints (as in somatization disorder), or having a serious

nervosa), having multiple physical complaints (as in somatization disorder), or having a serious illness (as in hypochondriasis), and the anxiety and worry do not occur exclusively during posttraumatic stress disorder |

| (E) The anxiety, worry, or physical symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning |
| (F) The disturbance is not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition (e.g., hyperthyroidism), and does not occur exclusively during a mood disorder, psychotic disorder, or a pervasive developmental disorder |

GAD and Autism Currently, anxiety is not considered a phenome-nological characteristic of Autism spectrum dis-orders (ASD; White et al. 2009). It is logical to think that the social disability associated with ASD could provoke anxiety – especially in higher functioning youth who are conscious of their def-icits (White et al. 2009). In children with ASD the rate of anxiety disorders range from 18% (Gadow et al. 2004) to 87% (Muris et al. 1998). deBruin et al. (2006) found that approximately 55%

(Gadow et al. 2004) to 87% (Muris et al. 1998). deBruin et al. (2006) found that approximately 55% of the sample of ASD had at least one anxiety disorder. Simonoff et al. (2008) reported an overall anxiety disorder diagnosis rate of almost 42%. Gjevik et al. (2011) found that 41% of the 71 children and adolescents with ASD had an anxiety disor-der. These studies suggest that anxiety disorders are more frequent in patients with ASD than in the general population. However frequent, these are

are more frequent in patients with ASD than in the general population. However frequent, these are rarely diagnosed with ASD due to a clinical consensus that they are better explained by the ASD itself (White et al. 2009). Given the substantial symptom overlap and the lack of clarity in differential diagnosis, this topic remains controversial.

Some of the most frequently reported anxiety disorders and symptoms seen in children with ASD are simple phobias, generalized anxiety dis-order, separation anxiety disorder, obsessive-compulsive disorder (OCD), and social phobia. There is some evidence that the prevalence of anxiety may differ across the specific diagnoses. Children with Asperger Syndrome appear most likely to experience anxiety, followed by PDD-NOS, and then Autism Disorder. These group dif-ferences must be interpreted

followed by PDD-NOS, and then Autism Disorder. These group dif-ferences must be interpreted cautiously given that diagnosis is often related to other factors such as level of cognitive functioning, which may also impact psychiatric comorbidity (White et al. 2009). Nonetheless, identification is difficult due to the patient’s concurrent difficulties with commu-nication, the presence of other behavior problems, the lack of standardized assessments specific to these patients, and the need for greater

problems, the lack of standardized assessments specific to these patients, and the need for greater collateral sources of assessment information (Davis et al. 2008). This explains why there is limited system-atic study of the diagnosis and treatment of anxi-ety disorders in patients with ASD.

Categorization GAD is not classified into categories.  Epidemiology Lifetime prevalence of GAD in the general popu-lation ranges from 2% to 15%. GAD occurs in up to 10% of the pediatric population, most of all adolescents. Childhood-onset GAD has an aver-age age of onset of 8.5 years. There is a 2:1 female-to-male preponderance, at all ages. Boys and girls of all ages with GAD have similar num-ber and types of symptoms (Keeton et al. 2009).

Natural History, Prognostic Factors, and Outcomes DSM-III was the first to include the category of GAD (APA 1980), and it did so as a residual category. The diagnosis was permitted only if the patient did not meet criteria for another Axis I disorder. The diagnostic criteria for GAD were revised substantially in DSM-III-R (APA 1987) and then again in DSM-IV (APA 1994). Although GAD can start in childhood or ado-lescence, most frequently GAD begins in early adulthood. A large proportion of

in childhood or ado-lescence, most frequently GAD begins in early adulthood. A large proportion of patients with GAD cannot report a specific moment of onset. Typically a person starts with subclinical symp-toms, and these worsen progressively. There are no consistent differences in the clinical presentation between early onset and late onset GAD. Once it is established, GAD tends to have a chronic and per-sistent course. Exceptionally patients can have periods of full remission, but usually

and per-sistent course. Exceptionally patients can have periods of full remission, but usually only have periods of improvement and others of worsening. Fluctuations are common, mainly related to life stressors. If left untreated GAD

According to the American Speech-Language-Hearing Association (ASHA) (2005), CAPD refers to difficulties in the perceptual processing of auditory information in the central nervous system and is demonstrated by poor perfor-mance in one or more of the following tasks: sound localization and lateralization; auditory discrimina-tion; auditory pattern recognition; temporal aspects of audition, including temporal integration, tempo-ral discrimination (e.g., temporal gap detection), temporal ordering,

temporal integration, tempo-ral discrimination (e.g., temporal gap detection), temporal ordering, and temporal masking; auditory performance in competing acoustic signals (including dichotic listening); and auditory perfor-mance with degraded acoustic signals. Despite this characterization, there remains little professional agreement about how CAPD should be defined, diagnosed, or treated (Dawes and Bishop 2009).

### Epidemiology  There are currently no epidemiological data concerning CAPD in children.  ### Natural History, Prognostic Factors, and Outcomes  There are currently no longitudinal studies of children with CAPD with which to address ques-tions of history, prognosis, or adult outcomes.

### Clinical Expression and Pathophysiology  Reported symptoms of CAPD may include difficul-ties understanding speech in noise, difficulties fol-lowing or understanding verbal instructions, poor attention and high distractibility, and communica-tion, language, reading, and academic difficulties.

### Evaluation and Differential Diagnosis  ASHA (2005) best practice guidelines recom-mend diagnosis by a multidisciplinary team that includes a minimum of an audiologist and a speech-language pathologist. Peripheral hearing should be thoroughly investigated using hearing thresholds, immittance measures, and otoacoustic emissions (Dawes and Bishop 2009). There are, however, no firm guidelines as to what standard-ized tests of auditory processing should be included, how many tests are required

to what standard-ized tests of auditory processing should be included, how many tests are required to tap the range of skills that may be compromised, or what cutoff would be indicative of a clinically signifi-cant impairment in central auditory functioning. Part of the controversy surrounding this disor-der appears to stem from the methods of assess-ment and the degree to which they involve speech stimuli (Dawes and Bishop 2009). When such tasks are included, it is difficult to ascertain the

stimuli (Dawes and Bishop 2009). When such tasks are included, it is difficult to ascertain the origin of the problem: If a child’s language is impaired, he or she might perform poorly on tests of speech discrimination in noise because of limitations in linguistic ability rather than a central auditory processing disorder. On the other hand, many language-based tasks will require the auditory processing abilities listed above. ASHA (2005) clarifies the situation to some extent by stating:

processing abilities listed above. ASHA (2005) clarifies the situation to some extent by stating: although abilities such as phonological awareness, attention to and memory for auditory information, auditory synthesis, comprehension and interpreta-tion of auditorily presented information, and similar skills may be reliant on or associated with intact central auditory function, they are considered higher order cognitive-communicative and/or language-related functions and, thus, are not included

higher order cognitive-communicative and/or language-related functions and, thus, are not included in the definition of CAPD. Differential diagnosis is a clinical concern; Dawes and Bishop (2009) point out that 50% of children meeting criteria for CAPD also meet criteria for other developmental disorders such as ADHD, autism spectrum disorder (ASD), or spe-cific language impairment (SLI). The degree of overlap raises issues about CAPD as a coherent diagnostic entity, and some have argued that the

of overlap raises issues about CAPD as a coherent diagnostic entity, and some have argued that the choice of diagnostic label reflects the concep-tualization of the problem by the professional assessing the child (Ferguson et al. 2011). In other words, a child with poor attention and language delay may be diagnosed with CAPD by an audiologist, DLD by a speech-language pathol-ogist, or ADHD/ASD by a clinical psychologist.

The difficulty is in determining the nature of the relationship between auditory processing difficul-ties and the developmental disorders associated with those difficulties. For example, if a child pre-sents with delayed language development, it may be reasonable to assume that these language diffi-culties are the result of difficulties processing sound. However, as noted above, language diffi-culties may interfere with the child’s ability to do tasks that assess auditory perceptual performance.

may interfere with the child’s ability to do tasks that assess auditory perceptual performance. Equally, there may be a third factor that disrupts both language development and auditory pro-cessing, yielding a strong association between the two even though they may be causally unrelated (see Bishop 2011 for discussion). Tests of CAPD frequently require children to make judgments about sounds; even when the stimuli are tones rather than speech sounds, lan-guage ability may affect performance.

when the stimuli are tones rather than speech sounds, lan-guage ability may affect performance. For exam-ple, Marshall et al. (2001) reported that many typically developing children spontaneously adopted a strategy of labeling tones as “high” or “low” and that this labeling facilitated perfor-mance on similarity judgment tasks. Thus, chil-dren with SLI may be disadvantaged on assessments of CAPD, though it is the case that a substantial minority of children with SLI do experience auditory

CAPD, though it is the case that a substantial minority of children with SLI do experience auditory difficulties (see Dawes and Bishop 2009). It is less clear that these auditory difficulties are causally related to language impairment, though feasibly that may contribute to language learning difficulties (Bishop 2011). However, it is also clear that many children diag-nosed with CAPD have considerable language difficulties and often do not differ from children with SLI with regard to language and

language difficulties and often do not differ from children with SLI with regard to language and cognitive profile (Ferguson et al. 2011). These findings again raise the question of whether these are diag-nostically and etiologically distinct categories or whether they reflect professional biases.

These tasks also require children to listen care-fully and attend to subtle sound differences over a large number of trials. Even typically developed children may find this challenging; for children with ADHD, it may be impossible. In order to differentiate CAPD and ADHD, Dawes and Bishop (2009) advocate the use of behavioral measures that tap visual attention. The prediction would be that children with ADHD would have difficulties across modalities, whereas children with CAPD would be impaired

with ADHD would have difficulties across modalities, whereas children with CAPD would be impaired only on the audi-tory tests. The more difficult issue to tease apart is whether performance on either measure by chil-dren with ADHD reflects attention skills or is indicative of a central processing disorder. With regard to ASD, perceptual anomalies are frequently reported in both research and clinical settings, though again these are rarely confined to the auditory modality. In addition, the child

settings, though again these are rarely confined to the auditory modality. In addition, the child with ASD is likely to have social deficits that may mimic auditory disorder. For example, not responding to parents calling the child’s name is an early indicator of ASD but may also signal an auditory deficit. Dawes and Bishop (2009) reported that children with ASD are overrepre-sented at assessment centers specializing in CAPD. Research studies that use electrophysio-logical techniques (e.g., ERP)

specializing in CAPD. Research studies that use electrophysio-logical techniques (e.g., ERP) have suggested that the auditory impairments that characterize ASD arise because of a speech-specific, postsensory impairment related to attentional orienting (Ceponiene et al. 2003; Whitehouse and Bishop 2008). Dawes and Bishop (2009) further suggested that such top-down influences on audi-tory processing would require a different treat-ment approach to developing listening skills from the treatments

would require a different treat-ment approach to developing listening skills from the treatments recommended for CAPD. In sum, it is likely that auditory processing problems are one of a number of “collateral” deficits commonly found in across a range of neurodevelopmental disorders (Dawes and Bishop 2009). Thus, assessment in a multi-disciplinary setting will be necessary for documenting auditory deficits and considering these deficits in relation to the child’s overall cognitive, linguistic, and

deficits and considering these deficits in relation to the child’s overall cognitive, linguistic, and social profile. Where possible, assessment of auditory skills that do not explicitly involve speech-based stimuli is preferable in order to avoid the confounding effects of impaired language development.

### Treatment  Bishop (2011) highlighted the importance of establishing the causal role of auditory processing in other developmental disorders because of the implications for treatment. If auditory difficulties contribute to attention or language difficulties, then it would make sense to train auditory skills with positive downstream effects for language and attention. However, if auditory deficits are associ-ated, but do not play a causal role in disorder, such treatments would not be

deficits are associ-ated, but do not play a causal role in disorder, such treatments would not be effective. Several computer-based training packages have been developed, with Fast ForWord (Scientific Learn-ing Corporation) being the most popular and widely used in clinical and education contexts. This program was not specifically designed for CAPD but is based on a theoretical framework in which development language and literacy learning difficulties arise from impairments in rapid auditory

development language and literacy learning difficulties arise from impairments in rapid auditory temporal processing (Tallal and Piercy 1973). Fast ForWord is comprised of adap-tive computer games that include acoustically modified speech; the degree of modification grad-ually diminishes as the child improves perfor-mance on the language-based tasks. It is most widely used for children diagnosed with SLI or dyslexia; however, rigorous trials of Fast ForWord and similar computer-based intensive

with SLI or dyslexia; however, rigorous trials of Fast ForWord and similar computer-based intensive auditory training have not yielded clinically significant improvements in language or literacy functioning (Loo et al. 2010; Strong et al. 2011). There is currently a dearth of studies investigat-ing treatment efficacy for children diagnosed with CAPD. For the most part, Dawes and Bishop (2009) report that current clinical practices do not aim to treat the auditory deficit directly, but rather aim

that current clinical practices do not aim to treat the auditory deficit directly, but rather aim to reduce the impact of auditory processing deficits through environmental modification (e.g., sitting the child nearer to the classroom teacher, waiting to have the child’s visual attention before speaking) or by enhancing the auditory signal (e.g., using a directional microphone in the classroom). However, the effect of these modifications on developing auditory skills or improving language and

However, the effect of these modifications on developing auditory skills or improving language and academic outcomes is largely unknown.

### Auditory System  ### Definition  The auditory system includes the outer, middle, and inner ears, as well as the central auditory nervous system. The outer ear includes the pinna and the external auditory meatus (ear canal). The tympanic membrane (eardrum) is the boundary between the outer and middle ear. The middle ear is housed in the mastoid portion of the temporal bone and is a completely enclosed cavity that is connected to the naso-pharynx by the Eustachian tube. The middle ear houses

enclosed cavity that is connected to the naso-pharynx by the Eustachian tube. The middle ear houses the three smallest bones in the body, the malleus, incus, and stapes, also known as the ossicular chain. The inner ear is called the cochlea, which contains the sensory hair cells and auditory nerve fiber endings that convert mechanical energy from the middle ear into elec-trical energy. The VIII cranial nerve, vestibulo-cochlear nerve, brings the auditory information to the central auditory

cranial nerve, vestibulo-cochlear nerve, brings the auditory information to the central auditory nervous system which consists of the brainstem nuclei (cochlear nuclei, superior olivary complex, lateral lemniscus, inferior colliculus, and medial geniculate body), the primary auditory cortex in the tempo-ral lobe and the association auditory cortices. The entire auditory system codes frequency, intensity, and time which are essential to the perception of sound and therefore speech.

### Auditory Verbal Learning  ### Definition  Auditory verbal learning refers to the process of acquiring and retaining new information about the sound patterns and/or meanings of words, sentences, stories, and other nonword sequences, after hearing them read aloud. A person’s ability to learn the underlying sound structures and meanings of words creates the foundation for that person’s ability to ultimately understand speech and use language to communicate with others. One of the core

to ultimately understand speech and use language to communicate with others. One of the core features of ASD is “a delay in, or total lack of, the development of spoken language” (American Psychiatric Association 2000). Thus, characterizing the strat-egies that people develop and use to learn lan-guage during auditory verbal learning tasks could help to illuminate the mechanisms underlying communication skills in autism.

### Historical Background  Research on auditory verbal learning began with the seminal work of Hermann Ebbinghaus, in the late 1800s. Ebbinghaus believed that learning verbal material required the formation of new associations between words. He also posited that the strength of these associations could be intensified with repeated exposure and practice. Thus, he designed a research program to test this hypothesis, using himself as a research subject. He developed lists of “nonsense syllables,”

this hypothesis, using himself as a research subject. He developed lists of “nonsense syllables,” which consisted of consonant-vowel-consonant combinations that have no specific meanings associated with them. For example, DAX and YAT would be considered nonsense syllables, since they are not words in the English language. CATwould not be a nonsense syllable since it has a known meaning. Ebbinghaus attempted to learn his lists of nonsense syllables by slowly reading and repeating the lists to

attempted to learn his lists of nonsense syllables by slowly reading and repeating the lists to himself. Next, Ebbinghaus tried to recall as many of the sylla-bles as he could. He discovered that his memory for the syllables improved with repeated practice of the material. In addition, he noted that his ability to learn the syllables initially improved rapidly and then more slowly over time, until he learned the material in its entirety. By character-izing these patterns, Ebbinghaus was the

he learned the material in its entirety. By character-izing these patterns, Ebbinghaus was the first to identify and map out verbal learning curves (patterns of learning over time and with repeti-tion). He similarly identified patterns of forget-ting over time and found that forgetting occurs less quickly, when the material is overlearned (repeatedly practiced, even after achieving per-fect recall of the list). In addition, Ebbinghaus examined serial position effects and discovered that words are

the list). In addition, Ebbinghaus examined serial position effects and discovered that words are easier to learn at the beginning and end of a verbal learning list. Research on auditory verbal learning contin-ued into the twentieth century, heavily influenced by Ebbinghaus’ work and also by behaviorism, with a focus on stimulus–response aspects of lan-guage learning. Then in the 1950s and 1960s there was a shift to studying cognitive “mediators,” which were thought to be conscious mental

there was a shift to studying cognitive “mediators,” which were thought to be conscious mental pro-cesses that can be deployed to improve verbal learning performance. This shift was heavily influenced by verbal mediation theory and cogni-tive psychology, which examined internal cogni-tive processes rather than focusing specifically on observable behaviors. In the late 1960s and 1970s, John Flavell extended findings related to verbal mediation and described verbal learning abilities from a

Flavell extended findings related to verbal mediation and described verbal learning abilities from a developmental standpoint, proposing that younger children have more trouble learning ver-bal information than older individuals because they have a production deficiency. In other words, younger children fail to spontaneously produce and use strategies to improve their per-formance. It was noted these children often showed significant improvements on auditory verbal learning tasks, once they were

children often showed significant improvements on auditory verbal learning tasks, once they were directly instructed to use specific strategies. For example, Flavell found that younger children were less likely to verbally repeat words to themselves while learning the words from a list, while older children were more likely to use verbal rehearsal with increasing age, and the spontaneous use of this strategy was associated with improvements on task performance. Flavell’s research initiated a

this strategy was associated with improvements on task performance. Flavell’s research initiated a flurry of subse-quent training studies examining whether direct instruction in strategy use improved children’s auditory verbal learning abilities. In other words, researchers took children who were not yet actively using strategies on their own and set out to see whether prompting them to use rehearsal, organization, and elaboration improved verbal learning ability. Overall, they found that the

organization, and elaboration improved verbal learning ability. Overall, they found that the abil-ity to use learning strategies typically develops in broad strokes throughout childhood, adolescence, and early adulthood. For example, there are grad-ual developmental increases in the ability to use semantic strategies and word meaning to aid ver-bal learning, from the preschool years through adolescence. These advancements in semantic strategy use are generally accompanied by related

adolescence. These advancements in semantic strategy use are generally accompanied by related improvements in verbal recall performance. Children often begin using word meaning to facilitate verbal learning during elementary school, and as preadolescents they are more likely to use seman-tic strategies successfully when tasks include words with strong associated meanings, and when there are directions that explicitly instruct them to use these strategies. By adulthood people can use word

directions that explicitly instruct them to use these strategies. By adulthood people can use word meaning to facilitate verbal learning, even when there are no explicit directions to do so, and when words are more subtly semantically related to one another. Similarly, verbal rehearsal also changes across development, with younger children rehearsing single words repetitively, while older adolescents rehearse multiple words in clusters. This shift from single-word to multi-word rehearsal is

rehearse multiple words in clusters. This shift from single-word to multi-word rehearsal is also associated with improved auditory verbal learning performance.

### Current Knowledge  In the late 1960s researchers began examining how children with ASD learn words and more complex verbal information. This interest stemmed from the observation that individuals with ASD could engage in echolalia and use ste-reotyped language without necessarily under-standing the core meaning of the words that they echoed. The ability to learn the sound patterns but not the meaning of words was surprising since typically developing people found it easier to learn

not the meaning of words was surprising since typically developing people found it easier to learn meaningful information compared to mean-ingless sets of words or sound strings (Marks and Miller 1964).

Using Word Meaning to Improve Learning: Semantic Strategies Hermelin and O’Connor were among the first to examine the relationship between word meaning and auditory verbal learning abilities in ASD. They did so by comparing children with ASD and those without ASD on their ability to learn and immediately recall verbal information with varying semantic relationships. They presented children with meaningless word strings and meaningful sentences. They were asked to recall as much as they could

meaningless word strings and meaningful sentences. They were asked to recall as much as they could remember, in each condi-tion. Children without autism remembered signif-icantly more sentences than word strings, while children with ASD did not show more efficient learning of meaningful information. Researchers also read children strings of unrelated words and strings of related words from a shared semantic category, such as colors or utensils. Children with ASD were much less likely to group

semantic category, such as colors or utensils. Children with ASD were much less likely to group words together from the same category than children without autism. Collectively, these studies sug-gest that children with ASD were less likely to use word meaning to aid auditory verbal learning. They were also more likely to rely on phonolog-ical features or sound patterns of the words rather than word meaning. It is important to note that these early studies primarily involved children who had

word meaning. It is important to note that these early studies primarily involved children who had ASD and intellectual disability. Subsequent research looked at both high- and low-functioning individuals with ASD; although studies yielded mixed findings, they generally support the observation that people with ASD are less likely than those without ASD to use word meaning to improve learning and memory of verbal information.

Using Word Order to Improve Learning: Primacy and Recency Effects The location and order of words within a word-learning list can also be used to improve auditory verbal learning skills. Scientists have studied whether individuals remember certain parts of a list more readily than other parts, and whether recalling words from the beginning, middle, or end of a list is associated with better learning and memory overall. Remembering words from the beginning or first portion of a list is referred

and memory overall. Remembering words from the beginning or first portion of a list is referred to as the primacy effect. This pattern of recall is thought to reflect the active use of verbal rehearsal, a strategy that involves repeating words over and over again to facilitate retention. Verbal rehearsal has been shown to improve audi-tory verbal learning in typically developing indi-viduals. Conversely, remembering words from the end of a word list is often referred to as a recency effect, and

remembering words from the end of a word list is often referred to as a recency effect, and is thought to reflect a more shallow level of processing that involves simply echoing back the sounds that were most recently heard. Low-functioning individuals with ASD tend to rely more heavily on rote memory abilities and are more likely than people without autism to simply echo back words from the end of a list. In other words they tend to show a stronger recency effect than people without ASD. This

of a list. In other words they tend to show a stronger recency effect than people without ASD. This suggests that they rely on more simple and less efficient learning strategies than individuals without autism, who are more likely to use verbal rehearsal to aid learning. Individuals who are high-functioning with ASD show a different pat-tern of verbal learning and memory. They have demonstrated typical primacy and recency effects when compared to people without autism. The degree to which

typical primacy and recency effects when compared to people without autism. The degree to which individuals with autism group words together, based on order, varies across stud-ies; some research has found typical serial posi-tion effects while other studies have not. Although overall, individuals with autism appear less able to actively deploy learning strategies efficiently to support their verbal learning.

Using Repetition to Improve Learning: Learning Curves and Retention over Time To examine auditory verbal learning over time, researchers have used experimental paradigms that involve reading a single list of words over a series of repeated trials. Verbal learning curves are quantified over time to determine how much new information an individual retains with each repe-tition of the verbal material. Some researchers have used the California Verbal Learning Test (CVLT; a standardized measure of

Some researchers have used the California Verbal Learning Test (CVLT; a standardized measure of verbal learning and memory) to examine the rate of verbal learn-ing in ASD compared to controls. During the CVLT participants hear a single list of nouns read aloud on five consecutive learning trials. After each trial, participants are asked to immedi-ately recall as many words as they remember. The list has a fixed word order and an underlying semantic structure, meaning that each word on the list

list has a fixed word order and an underlying semantic structure, meaning that each word on the list belongs to one of a few semantic catego-ries, such as fruits or furniture. When compared to people without ASD, adolescents and adults with high-functioning ASD show typical rates of verbal learning on early learning trials and poorer recall on later trials. This suggests less efficient auditory verbal learning over time. In other words, their ability to learn new verbal information over time

verbal learning over time. In other words, their ability to learn new verbal information over time slows down more quickly over repeated trials in comparison to people without ASD. In addi-tion, individuals with ASD were less likely to cluster words together based on shared semantic categories or the order in which they appeared in the original list. In this case, slower learning was likely attributable to less efficient use of learning strategies over time. To summarize our current knowledge,

to less efficient use of learning strategies over time. To summarize our current knowledge, the research to date suggests some general trends in auditory verbal learning abilities in ASD. First, individuals with ASD are less likely than people without ASD to use word meaning and semantic structure to enhance their learning abilities. Sec-ond, they are also less likely to use other active learning strategies, like verbal rehearsal and serial clustering. Finally, when word lists are read

learning strategies, like verbal rehearsal and serial clustering. Finally, when word lists are read repeatedly, individuals with ASD tend to learn words less efficiently over time. Although these are general trends observed in the research litera-ture, patterns of auditory verbal learning have not been entirely consistent across all studies, and these trends are observed more often in low-functioning individuals than in higher-functioning individuals with ASD.

### Future Directions  There are a number of possible avenues for future research on auditory verbal learning in ASD. First, future research could adopt a developmental perspective, using longitudinal studies that exam-ine auditory verbal learning abilities as people age and develop throughout their lifespan. Our knowl-edge about auditory verbal learning in ASD comes largely from cross-sectional studies, which provide a snapshot of verbal learning abil-ities by capturing performance at a

studies, which provide a snapshot of verbal learning abil-ities by capturing performance at a single time point in a person’s life. Larger scale longitudinal studies focusing on the emergence and active use of different types of verbal learning strategies at multiple points within a person’s life would help to identify whether specific patterns of learning are simply delayed in ASD or whether they remain consistently impaired throughout the lifespan. Knowing more about the development and use of

remain consistently impaired throughout the lifespan. Knowing more about the development and use of learning strategies and auditory verbal learning skills over time could help to shape inter-ventions designed to improve verbal learning and communication in this population. In the same vein, training studies could be conducted to explicitly instruct individuals with ASD to use strategies known to improve auditory verbal learning performance. Such studies could help to evaluate whether explicit

improve auditory verbal learning performance. Such studies could help to evaluate whether explicit instruction on strategy use would improve verbal learning in the short term. In addition, this line of research would also help to determine whether improvements due to instruction could be sustained over time, with-out additional instruction and maintenance. Finally, there has been considerable theorizing about underlying neurobiological mechanisms responsible for impaired auditory verbal

theorizing about underlying neurobiological mechanisms responsible for impaired auditory verbal learning in ASD. In particular, temporal and frontal lobe regions have been implicated, as well as more distributed problems with connectivity. Most studies investigating auditory verbal learning in ASD compare performance on list-learning tasks in individuals with ASD to patterns of perfor-mance in individuals with known brain lesions. This approach provides a starting point for iden-tifying

in individuals with known brain lesions. This approach provides a starting point for iden-tifying underlying neural mechanisms. However, future research could extend this research by uti-lizing imaging techniques to identify patterns of brain activation during verbal learning tasks in individuals with ASD, and to specify whether particular regions of the brain are related to less efficient verbal learning in this population.

### Augmentative and Assistive Technology  ### Definition  | Assistive technology | A broad range of devices, services, strategies, and practices that address the problems faced by individuals who have disabilities (Cook and Polgar 2008) |

|---|---| | Assistive technology device | “Any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities” (Assistive Technology Act of 2004) |

| Assistive technology service | “Any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device” (Assistive Technology Act of 2004) |
| Augmentative and alternative communication (AAC) | One type of assistive technology that specifically focuses on the strategies, interventions, and supports that assist a person with a disability to communicate |

### Historical Background  In 1988 the Technology-Related Assistance for Individuals with Disabilities Act (1988), called the Tech Act, provided support for activities to help individuals with disabilities to obtain assis-tive devices and services. The Tech Act focused on helping states create systems that would give individuals with disabilities improved access to assistive technology devices (Bausch et al. 2005). In 2004 the Assistive Technology Act, called the AT Act, continued support for

et al. 2005). In 2004 the Assistive Technology Act, called the AT Act, continued support for the sys-tems established by the earlier legislation. The AT Act also recognized that “there is a continued need to provide information about the availability of assistive technology, advances in improving accessibility and functionality of assistive tech-nology, and appropriate methods to secure and utilize assistive technology. . .” (AT Act 2004). The new law required majority of states’ funding that

assistive technology. . .” (AT Act 2004). The new law required majority of states’ funding that was to be used specifically for programs focusing on assistive technology reutilization, demonstration, and device loans (AT Act 2004). Both the Individuals with Disabilities Educa-tion Act of 2004 (IDEA) and Rehabilitation Act of 1973 speak to the provision of assistive technol-ogy in school. IDEA states that assistive technol-ogy devices and services must be made available “if required as a part of

that assistive technol-ogy devices and services must be made available “if required as a part of the child’s special educa-tion, related services or supplementary aids and services” (2004). While IDEA uses the AT Act terminology in its definition of assistive technol-ogy, it also more specifically outlines the respon-sibilities related to application in the educational setting. The Rehabilitation Act of 1973 ensures that students who do not qualify for special edu-cation but require AT are still

of 1973 ensures that students who do not qualify for special edu-cation but require AT are still provided access to those supports and services.

### Current Knowledge  Assistive technology (AT) has been integrated into our work, home, school, and community through programs that focus on identifying, obtaining, and using assistive technology in order to maximize the independence and partici-pation of individuals with disabilities in society (Tech Act 1988). This process of matching the person with a disability, the activity or task, and the assistive technology device is outlined in the definition of assistive technology service found in

assistive technology device is outlined in the definition of assistive technology service found in the AT Act (2004). The types of activities that are part of assistive technology service include eval-uation of AT needs of the person, including in relevant and functional environments; procuring the device; conducting tasks associated with obtaining and maintaining the proper device; coordinating different stakeholders to support the assistive technology; training or technical assis-tance; and

different stakeholders to support the assistive technology; training or technical assis-tance; and expanding access to AT (ATAct 2004). The definition of a person with a disability, according to the Americans with Disabilities Act, is “a person who has a physical or mental impairment that substantially limits one or more major life activities” (ADA n.d.). In order to access the available AT resources, an individual with autism spectrum disorder or other disabilities will need the support of

an individual with autism spectrum disorder or other disabilities will need the support of knowledgeable team members who can be actively involved in the AT evaluation and implementation. The team can now move toward the identification of appropriate AT tools, training, and technical assistance neces-sary to increase the person’s abilities to success-fully participate in a range of life activities as independently as possible. The qualifications of the evaluation team mem-bers are not specified in

as independently as possible. The qualifications of the evaluation team mem-bers are not specified in the law, but at a minimum the team should be able to execute the steps of an assistive technology assessment including identi-fying the relevant strengths and challenges of the individual knowledgeable about the range of AT options that are available for consideration (OCALI 2013). AT services are provided by pro-fessionals in a number of different fields, such as speech pathology, occupational

provided by pro-fessionals in a number of different fields, such as speech pathology, occupational therapy, physical therapy, engineering, and special education. The law does not require evaluators to have specific credentials; the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) has developed a certification program so that professionals from related fields can be certified as an Assistive Technology Professional (ATP). ATPs are skilled with evaluating the needs

certified as an Assistive Technology Professional (ATP). ATPs are skilled with evaluating the needs of individuals, matching them to AT, and helping with training in implementation. RESNA has also identified standards of practice in the field of assistive technology which guide the work of ATPs for consistency and fidelity. Consideration of a person’s assistive technol-ogy needs requires an understanding of the user’s abilities and challenges, the context for applica-tion, and relevant experiences

of the user’s abilities and challenges, the context for applica-tion, and relevant experiences with other AT sup-ports and strategies. The World Health Organization refers to the term disability as “reflecting the interaction between features of a person’s body and features of the society in which he or she lives” (WHO). This definition highlights the relationship between a person’s abilities and the performance expectations as opposed to a specific diagnosis. The elements of the assessment of the

performance expectations as opposed to a specific diagnosis. The elements of the assessment of the person’s strengths and difficulties are not prescribed by law. Evaluation teams may assess the person’s vision and hearing abilities, as well as their mobility, cognition, learning, communica-tion, and social skills. To understand the impact of the disability fully, functional contexts must be included in the evaluation. Some other major life activities that could be observed are recreation, daily

in the evaluation. Some other major life activities that could be observed are recreation, daily living, self-care, and working. Activities such as reading, concentrating, standing, lifting, bending, and others (ADA 2011) represent an even broader interpretation of potential applica-tions of assistive technology (Pacer). Selecting assistive technology is a dynamic process of matching the task, the person, and the tool. There are many resources available online and in texts to guide teams

the person, and the tool. There are many resources available online and in texts to guide teams through the process of assessing the need for assistive technology, such as the SETT process (Zabala 2005e), the Wiscon-sin Assistive Technology Initiative (WATI 2009a), and OCALI AT Resources (2013). In addition to information about specific AT devices, these documents also outline a sequence of steps for an ATevaluation, such as the one from OCALI (2013) below: 1. What are the specific tasks the

for an ATevaluation, such as the one from OCALI (2013) below: 1. What are the specific tasks the person needs to perform? 2. What barriers exist, and what is the impact on the person’s participation in the task? 3. What strategies and tools have been tried, and what were the results? 4. What AT tools or strategies might be useful in overcoming these barriers or challenges?

As part of making that decision, the team should consider the full range of AT options that are available, from the simplest envi-ronmental adaptation to a basic tool to a complex computer-based device. Reed (2009) suggests that teams look at a range of sources to learn about options, including books, catalogs, websites, or actual hardware or software. Here is where it is important to have as part of the team at least one person who has some knowledge about relevant assistive technology (Reed

of the team at least one person who has some knowledge about relevant assistive technology (Reed 2009) to help evaluate the findings. Different options of AT to meet dif-ferent needs are presented in the next section. Based on the collected information, what would be the best idea to try next? What is the plan for implementation of the identified AT solu-tions? This is the point in the process where the specific device and services are selected. The clear determination of the target tasks, the

the specific device and services are selected. The clear determination of the target tasks, the assessment of the person’s abilities and challenges in that context, and consideration of prior efforts will prepare the assessment team to make informed decisions and thoughtful recommendations for next steps. Once a decision has been made about what AT to try, a plan for monitoring the trial should be identified. How will training be provided? How and when will the AT be used? What are the indicators

identified. How will training be provided? How and when will the AT be used? What are the indicators of success? What might suggest that the device is not meeting the identified need? Again, the online AT resources are excellent ref-erences for suggestions of questions to ask (WATI 2009b; Zabala 2005d; OCALI 2013). Monitoring the final steps of the process is as important as the other steps in ensuring proper implementation and also documentation of benefits and deficiencies. Even with a good

ensuring proper implementation and also documentation of benefits and deficiencies. Even with a good assessment process, it still may be necessary to conduct trials of multiple tools before a solution is identified (Reed 2009). The team may have already created a list of ideas from which to draw their next AT support. Addi-tional trials should follow the same process of planning and documentation until a successful match is made. The evaluation process defined the context of the need and the

until a successful match is made. The evaluation process defined the context of the need and the necessary features of the device. The step that involves a discussion of potential AT solutions requires an awareness of the continuum of options available for the identified need. The sections below are organized according to broad areas of need: sensory; seating, positioning, mobility, and transportation; reading, writing and computer; cognition and learning; and communi-cation. A brief description

reading, writing and computer; cognition and learning; and communi-cation. A brief description of the skills or func-tions included in that section is followed by list of examples of AT for those purposes. More general names of different types of supports are used as opposed to naming of specific devices, hardware, software, or materials that would be quickly out-dated. The topic of communication is covered in detail following the other areas. AT options related to vision (e.g., cortical vision,

covered in detail following the other areas. AT options related to vision (e.g., cortical vision, visual acuity) include large-print books, Braille, digital books, screen readers, magnifi-cation aids, and optical aids. AT options related to hearing (e.g., hearing acuity, auditory processing, auditory sensitivity) include hearing aids, speech processors, FM systems, alerting systems, captioning, and noise-cancelling headphones. AT options related to seating, positioning, mobil-ity, and

and noise-cancelling headphones. AT options related to seating, positioning, mobil-ity, and transportation include manual and power wheelchairs, walker, cane, adapted table, stander, seat cushion, adapted chair, positioning wedges, grab bar, wheelchair van, wheelchair lift, and specialized car seat. AT options for reading, writing, and computer interface include audiobook, E-book or elec-tronic book, screen reader, alternate keyboard, on-screen keyboard, keyguard, joystick, alter-nate mouse,

book, screen reader, alternate keyboard, on-screen keyboard, keyguard, joystick, alter-nate mouse, stylus, voice commands, speech to text application, word prediction applications, eye gaze technology, electronic switch, adapted pen/pencil, and portable electronic device. AT options for activities of daily living and envi-ronmental control (operation of electronics such as lights, phone) include adaptive switches, adapted utensils, specialized handles and grips, switches, alternate keyboards,

adaptive switches, adapted utensils, specialized handles and grips, switches, alternate keyboards, com-puters, remote controls, voice command speakers, and portable electronics. AT to support cognition and learning, such as attention, memory, information processing, knowledge representation and organization, problem-solving, language, and learning (Cook and Polgar 2008), prioritizing, plan-ning, organizing, self-monitoring, and working memory (Temple 2013) includes electronic and nonelectronic

organizing, self-monitoring, and working memory (Temple 2013) includes electronic and nonelectronic materials such as timers, watches, alarms, calendars, reminders, audio recorders, schedules, task lists, sticky notes, graphic organizers, and work systems.

Assistive technology that specifically addresses the needs associated with impairments in speech and communication is called augmenta-tive and alternative communication or AAC. Augmentative communication (AAC) tools and interventions are typically used to supplement a person’s existing communication abilities, including any natural speech, rather than replacing it. The purpose of AAC, according to Light, McNaughton, and Caron (2019), is to “(a) enhance language learning, (b) facilitate social

to Light, McNaughton, and Caron (2019), is to “(a) enhance language learning, (b) facilitate social interaction, (c) improve literacy skills, (d) increase participation in society, and (e) teach partner interaction strategies” (p. 26). No-tech or unaided communication supports use a person’s own body or the environment with no requirement for equipment. Examples include speaking, pointing, gestures, facial expressions, and manual signing. The strengths of unaided methods are that they do not

facial expressions, and manual signing. The strengths of unaided methods are that they do not require preparation or management of materials and they are always available and cannot be lost, broken, or damaged and do not cost anything. When used in a context that has information to support a person’s message, gestures, vocalizations, and facial expressions can be very effective forms of communication. Low-tech communication systems include nonelectronic and paper-based materials. Com-munication

Low-tech communication systems include nonelectronic and paper-based materials. Com-munication boards, communication books, and paper communication displays are all examples of low-tech supports. The benefits of low-tech supports are that they are typically inexpensive, lightweight, portable, and easily customized. Indi-viduals who use high-tech communication sup-ports often have a low-tech version, created by printing a copy of the displays to use in situations when the device is unavailable or

created by printing a copy of the displays to use in situations when the device is unavailable or impractical. High-tech communication aids are often called “speech-generating devices” or SGDs. Because they are computer-based, high-tech SGDs offer many options for how messages can be organized, displayed, and generated. The type of display used in high-tech devices is called a “dynamic display,” where the message targets displayed on the device will change based on the user’s selec-tion. Most

where the message targets displayed on the device will change based on the user’s selec-tion. Most high-tech SGDs allow the user to deter-mine the number of cells, or targets, that are displayed on the screen. Some devices will allow the user to create their own cell size and configu-ration, while others offer a specific set of page layout options. Many devices come with page sets where the display, messages, representations (symbols), and behaviors (response) have already been programmed. By

messages, representations (symbols), and behaviors (response) have already been programmed. By selecting from a set of preprogrammed displays, the person using the device can make necessary edits to individualize their communication support. When using a keyboard display, as the user types, the letters and words are displayed in a message window or screen that is usually above the keyboard. The message is then spoken by the device. When the device speaks what a user has typed, it is using a

message is then spoken by the device. When the device speaks what a user has typed, it is using a form of technology called “text to speech,” which refers to the process of converting the text entered by the user into spoken output. Until recently, high-tech dynamic display devices were the least available and most expen-sive type of communication support. With the increase in the use of portable electronics in the general population, the availability of these devices for individuals requiring

electronics in the general population, the availability of these devices for individuals requiring AAC has also increased. Software applications that support communication have been developed for com-mercially available electronic devices and can easily be added to mobile devices such as smartphones and tablets (e.g., iPhones, iPads, android phones, and tablets). McNaughton and Light (2013) noted positive contributions of these options included “increased awareness and social acceptance of AAC

positive contributions of these options included “increased awareness and social acceptance of AAC in the mainstream, greater consumer empowerment in accessing AAC solutions. . .” (p. 107). With the rapid development of new applica-tions and changes in operating system features, a list of specific communication apps would not be a very relevant resource for long. Instead, the work on mobile media devices (e.g., tablets, phones) by Caron and Shane (2014) outlines the app features that were most

devices (e.g., tablets, phones) by Caron and Shane (2014) outlines the app features that were most desirable for individ-uals with ASD: purpose; output (speech pro-duced); speech settings; representation (symbols), display (layout, design), and feedback (visual, auditory, tactile); rate enhancement (prediction), access, and motor; and app interface (social). This might be a more useful reference when considering AAC devices.

### Future Directions  In their entry on mobile technology, McNaughton and Light (2013) identify evidence-based prac-tices in the field of AAC that are critical to the implementation of any AAC device: proper assessment of the individual and communicative contexts; device selection and customization based on assessment; focused intervention to increase competency; and training and support of partners. The concept of universal design has the poten-tial to reduce the need to use assistive

of partners. The concept of universal design has the poten-tial to reduce the need to use assistive technology or individual adaptations. Applying the principles of universal design increases accessibility for all and decreases the need for specialized products for individuals.

### Australia and Autism  ### Historical Background  Australia has a land area about 80 % the size of the USA, China, Europe, and Canada, and 30 times the size of the UK. The total population of Aus-tralia is 23 million, with most inhabitants living in several large cities, each with a population of between one and four million. There is a federal system of government, as well as six states and two territories, each with its own state legislature and service systems for health, education,

and two territories, each with its own state legislature and service systems for health, education, com-munity services, and law. Further, each city or municipal area has a local council and responsibility for services that impact on people with disability. There are thus three levels of gov-ernment all with involvement in services of vari-ous kinds, quite apart from a range of private foundations, organizations, and corporations which also provide service. The history of autism in Australia

organizations, and corporations which also provide service. The history of autism in Australia follows that in the USA and the UK, beginning with the pioneering work of Kanner in the USA (Kanner 1943). However, specific interest in autism within Australia, apart from individual clinical work, did not emerge until the 1960s. At this time, signifi-cant research findings were beginning to emerge from studies in the UK and USA, and trends in child and adolescent psychology and psychiatry in Australia

in the UK and USA, and trends in child and adolescent psychology and psychiatry in Australia largely followed developments in these countries. Initially most research and clini-cal interest was in children in early school year (Bettelheim 1967; DeMeyer et al. 1972; Bartak et al. 1975), usually male, with full scale IQ under 70, with quite severe features of autism and with parents who appeared emotionally stressed. Many clinical programs were focused on the involve-ment of parents in the

emotionally stressed. Many clinical programs were focused on the involve-ment of parents in the development of their child’s autism. This was partly because autism was still embedded in psychiatry, and child psychiatric programs in Australia had tended to follow a psychodynamic orientation in the absence of much in the way of objective research on causes of behavioral problems generally. Input from other health professionals from the 1950s to the 1980s would often be limited to neurological

from other health professionals from the 1950s to the 1980s would often be limited to neurological opinion to exclude underlying medical condi-tions. The work of Bettelheim (1967) more spe-cifically in the area of autism within a psychodynamic framework also influenced pro-grams in Australia at this time. However, from the 1960s, new approaches, taking into account behavioral criteria for autistic disorder and intel-lectual ability, were beginning in Australia, fol-lowing developments overseas,

disorder and intel-lectual ability, were beginning in Australia, fol-lowing developments overseas, including the work of Rutter and Schopler (1987), Rimland (1964), DeMeyer et al. (1972), and Ornitz and Ritvo (1968) in the USA and Bartak et al. (1975), Hermelin and O’Connor (1970), and Frith (1989) in the UK. From the 1980s, in line with other changes in the way services were provided to children (see below), Australia has adopted objective diagnostic criteria as they have been developed and is

(see below), Australia has adopted objective diagnostic criteria as they have been developed and is looking with interest at the new Diagnostic and Statistical Manual-5 criteria for autism from the American Psychiatric Association (2013).

### Diagnosis  As mentioned above, diagnosis of autism was done predominantly by psychologists and psychi-atrists in Australia until the 1980s. The service context is important here in thinking about the changes that have occurred over time and the current situation. In Australia, the federal govern-ment funds health professionals, including doc-tors, allied health professionals, and psychologists through Medicare funding, to work in private health-care settings which are run as businesses. In

through Medicare funding, to work in private health-care settings which are run as businesses. In 2008, the federal government launched a funding program called “Helping Children with Autism” (HCWA) that provided funding for diag-nosis and assessment of children suspected as having autism, using Medicare billing. The HCWA funding also included intervention funding (see below). The states and territories provide funding for public health-care facilities, including the salaries of health-care

provide funding for public health-care facilities, including the salaries of health-care professionals. Each state and territory can take and has taken a different, and often changing, approach to the service type and location that they will fund for diagnosis and assessment of developmental prob-lems, including autism. Some diagnostic services are based in hospitals and others in community settings. Consistent features across states and ter-ritories have been (1) the emergence of

settings. Consistent features across states and ter-ritories have been (1) the emergence of multi-disciplinary teams based in publicly funded services, from the 1960s but not widespread until the 1980s for the diagnosis and assessment of children with developmental problems, includ-ing autism, usually including a pediatrician (less commonly a child psychiatrist), speech patholo-gist, and psychologist, but with varying composi-tion between states and territories and between regions within states

but with varying composi-tion between states and territories and between regions within states and territories and no given per capita rationale for geographic location; (2) increasing numbers of pediatricians, speech pathologists, and psychologists working in pri-vate settings, in isolation but providing parts of the assessment required for a diagnosis of autism; and (3) greater, but not consistent between services or clinicians, use of standardized assess-ment instruments (e.g., Autism

between services or clinicians, use of standardized assess-ment instruments (e.g., Autism Diagnostic Obser-vation Schedule (ADOS) (Lord et al. 2001), Ehlers and Gillberg’s High Functioning Autism Syndrome Screening Questionnaire (ASSQ) (1999), the Autism Diagnostic Interview-Revised (ADI-R) (Rutter et al. 2003), or the Diagnostic Interview for Social and Communication Disor-ders (DISCO) (Wing et al. 2002)). In Western Australia, an active group of clinicians has devel-oped a standard assessment

2002)). In Western Australia, an active group of clinicians has devel-oped a standard assessment model which has formed the basis of a multidisciplinary diagnos-tic and assessment procedure. This procedure has not yet been taken up throughout Australia. Con-sistent with other high-income countries, Austra-lia has seen a trend toward earlier diagnosis of autism, such that it is now common to see chil-dren as young as 2 years of age, and sometimes less than two, presenting with concerns. Children

as young as 2 years of age, and sometimes less than two, presenting with concerns. Children with relatively good language skills are some-times still not being seen by diagnostic teams until 8–12 years of age. In parallel with other high-income countries, milder cases are also being diagnosed in Australia. The term autism spectrum disorder had high uptake in Australia by the early 2000s. That con-ceptualization combined with the use of DSM-IV’s diagnostic category pervasive devel-opmental

con-ceptualization combined with the use of DSM-IV’s diagnostic category pervasive devel-opmental disorder-not otherwise specified (PDD-NOS) and the acceptance of PDD-NOS as sufficient for service entry saw an increasing num-ber of children with fewer diagnostic features and of lower severity level being labeled.

### Early Intervention  Australia has followed the USA, Canada, and the UK in embracing early intervention for children with developmental disorders, including autism. Publicly funded early intervention services devel-oped in Australia during the 1960s. Autism asso-ciations also began in Australia in the 1960s, and in that role were some of the earliest “early inter-vention” providers. Traditionally state govern-ments have provided early intervention for children with substantial developmental

state govern-ments have provided early intervention for children with substantial developmental prob-lems, based on functional ability and needs rather than diagnosis. The HCWA funding of 2008 transformed the early intervention landscape in Australia, with families receiving some dedicated federal funding for early intervention services and with one early intervention-enriched child care facility being established in every Australian state. The HCWA funding package provides funding for early

being established in every Australian state. The HCWA funding package provides funding for early intervention for children from diagnosis up to their seventh birthday (however, they must be registered by their sixth birthday), with five being the age of school entry for most children in Australia. An essential and increasing feature of these programs has been to provide support and education for parents so that they can supplement the program activities with struc-tured activities at home.

### Education  In 1984, the State of Victoria conducted a review of educational services for disabled children. Prior to this, Victoria and other Australian states had a long history of provision of specialized educa-tional settings for children with various disabil-ities. Some special schools catered for children with IQ under 70, others for children with sensory or motor difficulties. Schools for children with severe intellectual disability were run by the State Health department as were a

for children with severe intellectual disability were run by the State Health department as were a number of large long-stay residential institutions, some of which had as many as 900 residents many of whom had been there since early childhood for periods of many years. Children with autism had often been thought to be ineducable and tended to end up in small Health Department schools or the larger residential training centers. The review resulted in radical findings and recommended total

larger residential training centers. The review resulted in radical findings and recommended total inclusion in normal schools for all children with a disability. The small schools for children with severe disability were to be transferred to the State Education Department, and it was expected that all specialist schools would be gradually phased out and closed as all children with a disabil-ity would eventually be enrolled in local com-munity public or private schools providing general

would eventually be enrolled in local com-munity public or private schools providing general educational facilities. Where a school had more than six children with special needs, the State Education Department would provide resources to employ a special education teacher and classroom aides. Similar changes have occurred elsewhere in Australia. However, in many regular schools, aides have often been left to work on their own with children with a disabil-ity with insufficient specialist guidance.

left to work on their own with children with a disabil-ity with insufficient specialist guidance. In addi-tion, closure of special schools has not continued. As a result, while many children with autism go to regular schools, a significant number continue to attend specialist schools which were originally set up for children with intellectual disability and have not been geared to the specific needs of children with autism. Outcomes for children with autism in all of these schools have tended to

of children with autism. Outcomes for children with autism in all of these schools have tended to depend upon the quality of individual teachers and in regular schools, upon the degree of support of school principals. In addition, starting in NSW and Victoria in the 1970s, special schools for children with autism were set up with financial support by parents and private charitable founda-tions. This followed a similar pattern to what had occurred in the USA, UK, and other parts of the world. In

followed a similar pattern to what had occurred in the USA, UK, and other parts of the world. In Australia, State Educational Authorities have come to provide some degree of financial and administrative support to such schools in most states.

### Adult Years  Over time state autism associations and service providers have recognized at least to some extent that children do not grow out of autism but rather grow with it and become adults with autism. One consequence has been the develop-ment of social skills programs that are relevant to the development of both casual and more permanent and intimate social relationships. Some of these include sexual and other health topics as well as the development of basic inter-personal

of these include sexual and other health topics as well as the development of basic inter-personal communication skills. As an example, one very successful program developed in Vic-toria was a “Train the Trainer” program. This was an established course already taught at a technical and further education college which qualified people to become adult education trainers. It was modified to focus specifically on autism. Successful graduates were trained to be public speakers and trainers in the field

on autism. Successful graduates were trained to be public speakers and trainers in the field of autism and could run single sessions or short courses for members of the general public to learn about autism. Twenty adults with autistic disorder were recruited to take the course. Much of the course involved group project activity as well as extensive class discussion. To some degree of surprise amongst both staff and the class members themselves, participants enjoyed the group activities, and

amongst both staff and the class members themselves, participants enjoyed the group activities, and ultimately, 17 of the 20 completed the course and obtained graduate certificates as trainers.

### Autism Associations  All states in Australia have autism support asso-ciations. These were mostly set up by parents of children with autism when there were few facili-ties and little governmental support, beginning in the 1960s. In most states, the association has at least one specialist school or class for children with autism and also provides services for chil-dren and adults with autism as well as provides information for members of the public, advocacy for the autism community, and

as well as provides information for members of the public, advocacy for the autism community, and parental support services.

### Legal Issues, Mandates for Service  While there is no legislation specifically directed to people with autism, Australia has for many years had disability relevant legislation federally as well as in all states and territories. In general, most of this was enacted from 1993 following the United Nations Declaration on the Rights of Dis-abled Persons. In general, legislation either makes discrimination illegal or makes legal provision for supply of services to people with disability. In 2013,

illegal or makes legal provision for supply of services to people with disability. In 2013, the Federal Government announced a National Disability Insurance Scheme (NDIS) to be developed in cooperation with state govern-ments, to provide financial support to people with disability. This is being modeled on the fed-eral scheme for financial support of people with autism and insurance schemes for those left with a disability following an accident.

### Overview of Current Treatments and Centers  Today, each state and territory has their own sys-tems for assessment and diagnosis of autism. In some states, these systems still reside in mental health services, while in others, they are embedded in child health or disability services. Diagnostic practices within these services vary within and between states. A parallel private system for diag-nosis and assessment, as described above, con-tinues to operate, and assessment procedures vary

and assessment, as described above, con-tinues to operate, and assessment procedures vary between individual clinicians. In response to a need for quality and consistency, as well as recognition of the need for quality and consistency for other service providers, standards and a scheme for cer-tification have been developed. In this scheme schools, clinics and individual practitioners may become certified as skilled practitioners or service providers in the field of autism. This system is similar

as skilled practitioners or service providers in the field of autism. This system is similar to the British accreditation scheme for schools and centers in the UK but includes certifi-cation of individual practitioners and services for adults as well as of children’s services, as in the UK. The Australian system was developed through the local state autism association in Victoria but is supported by the federal peak body for autism in Australia, the Australian Advisory Board on Autism Spectrum

by the federal peak body for autism in Australia, the Australian Advisory Board on Autism Spectrum Disorders. Early intervention services continue to be offered by state and federal governments and often operate as parallel services. Many autism associations also provide early intervention ser-vices for children and their parents/carers and educational services, either on a fee for service basis or supported by federal or state funding. This has been identified as a problem by gov-ernment,

or supported by federal or state funding. This has been identified as a problem by gov-ernment, professionals, and consumers, and it is hoped that the new National Disability Insurance Scheme will streamline and improve coordination of care for early intervention. The issue of inclusion continues. In some countries other than Australia (e.g., Britain), there are schools that cater specifically for chil-dren with autism and some of these extend to full secondary education. Children attending such

chil-dren with autism and some of these extend to full secondary education. Children attending such schools might then have 12 years of school edu-cation with only others with autism as fellow students. In Australia, there are a number of spe-cial schools for children with autism. However, these are generally at primary level. Few children with autism would stay in an exclusively autism setting to school leaving age of 17–18. Inclusion in regular schools has generally been actively promoted in

school leaving age of 17–18. Inclusion in regular schools has generally been actively promoted in Australia. However, the issue remains as to which setting is more effective for children with autism and few controlled studies have been carried out. Those that have been car-ried out, including the early studies (Bartak and Rutter 1973), have shown clear support for struc-tured educational methods whatever the overall setting. Awareness and consideration of the needs of adults with autism

whatever the overall setting. Awareness and consideration of the needs of adults with autism continues to develop gradually in Australia. This has been referred to already in connection with social skills programs. However, it has become apparent that a much wider range of services than those provided for children is nec-essary for adults. These will include work prepa-ration and further education, health education and services, counseling and psychiatric services, aged care, housing and

health education and services, counseling and psychiatric services, aged care, housing and independent living options, leisure and recreational training, trans-port options and training, and forensic and judicial training and orientation.

### Social Justice and Forensic Issues  Although there are few studies either in Australia or elsewhere (Bartak 2011; Cashin and Newman 2009; Newman and Ghaziuddin 2008; Mouridsen 2012), it is apparent that a number of adults with autism may be charged with a variety of offenses. In many instances, the offense will have occurred inadvertently and essentially through a lack of comprehension both on the part of the person with autism and through misunderstanding of autistic behavior by police

on the part of the person with autism and through misunderstanding of autistic behavior by police and judicial staff. While the limited evidence suggests that people with autism spectrum disorders are not more likely to offend than others, they are overrepre-sented in the justice system. In part this may be owing to failure by family members and staff of community agencies (such as schools or medical facilities) to recognize autism in the respective individual. He or she may then inadvertently

facilities) to recognize autism in the respective individual. He or she may then inadvertently break the law for one or other of the above rea-sons. Provision in this area requires better training of police and judicial staff to increase their under-standing of autism, and this is starting to occur in Australia through joint seminars and other train-ing programs with staff from autism associations, university departments, and members of police and justice departments.

### Overview of Research Directions  Until recently, Australia had no systems in place or funding models to connect autism researchers beyond informal email networks. Over the last 5 years, the Australasian Society for Autism Research (ASfAR) has been established and now has over 180 members. This year the federal gov-ernment funded an application for the formation of a Cooperative Research Center (CRC) for liv-ing with autism spectrum disorder. The federal government will provide over $30

(CRC) for liv-ing with autism spectrum disorder. The federal government will provide over $30 million for 8 years, with additional cash and in-kind contri-butions from participants and partners exceeding $60 million. The CRC will support an “across the life-span” program of research. In parallel with other high-income countries, Australian scientists, researchers, and professionals with important skill sets for research in autism (e.g., geneticists, infor-mation technology experts,

important skill sets for research in autism (e.g., geneticists, infor-mation technology experts, bioengineers, ethicists, and lawyers) have been forming transdisciplinary and intersectoral partnerships with autism experts to advance our knowledge of autism in a way that should lead to improved care and outcomes for those affected. Many universities have acknowledged the importance of autism and related disorders by establishing Chairs in autism and developmental medicine, or similar, and

and related disorders by establishing Chairs in autism and developmental medicine, or similar, and Research Institutes have developed relevant research group hubs. Increas-ingly, autism associations and the Australian autism peak body are linking directly with researchers.

### Australian Scale for Asperger’s Syndrome  ### Description  The Australian Scale for Asperger’s Syndrome (ASAS) is a rating scale that aims to assist in the identification of children likely to be at risk of the condition. The scale is based on formal diagnostic criteria, research literature on associated conditions and features, and extensive clinical experience of the authors (Garnett and Attwood 1998). While acknowledging the core sets of criteria developed by organizations, viz.,

and Attwood 1998). While acknowledging the core sets of criteria developed by organizations, viz., American Psychiatric Asso-ciation (APA) and the World Health Organization (DSM-IVand ICD-10, respectively), they adopted the clinically derived diagnostic criteria of Gillberg and Gillberg. Attwood viewed these as “clear, con-cise and comprehensive” (Attwood 1998, p. 23). The ASAS has not been updated to align with the Diagnostic and Statistical Manual of Mental Dis-orders 5th ed. (DSM-5) (APA

to align with the Diagnostic and Statistical Manual of Mental Dis-orders 5th ed. (DSM-5) (APA 2013) in which Asperger’s disorder has been subsumed under the umbrella diagnosis autism spectrum disorder (ASD). The rating scale is designed to be completed by parents, teachers, or other professionals who know the child. It is comprised of six sections, A–F, and covers behaviors and abilities consistent with a primary-school-age child with the former diagnosis of Asperger’s syndrome. These include

with a primary-school-age child with the former diagnosis of Asperger’s syndrome. These include social and emotional issues, communication skills, cognitive skills, specific interests, move-ment skills, and a range of other characteristics such as sensory sensitivities, age of language development, and facial tics or twitches. The scale consists of 24 questions, each with an example of the behavior or skill being deter-mined. Responses are scored on a Likert scale from 0 to 6, with 0 indicating

or skill being deter-mined. Responses are scored on a Likert scale from 0 to 6, with 0 indicating rarely and 6 fre-quently. Within this scale, 0 is deemed the usual level expected of a child of that age. The final section (F) consists of a further 10 fea-tures or behaviors which the respondent com-pletes as appropriate by ticking the box. While no specific cutoff is noted, the authors suggest that when the majority of the questions are answered in the affirmative with scores between 2 and 6, a

when the majority of the questions are answered in the affirmative with scores between 2 and 6, a referral for full diagnostic assessment may be indicated. High scores do not, by defini-tion, imply the condition. Full clinical assessment, if this were to be undertaken, would enable further examination of the six core areas rated in the scale. The authors revised the scale for use with chil-dren and adolescents aged 5–18 years (ASAS-R, unpublished Ph.D. thesis, 2007). They advised general

and adolescents aged 5–18 years (ASAS-R, unpublished Ph.D. thesis, 2007). They advised general adherence to the interpretation of scores as per the original measure. No psychometric data are available at this time. Further work has focused on developing a measure that provides an autism symptomatology profile that in turn may be useful in clinical settings for targeting and measuring intervention impact (Garnett et al. 2013).

### Historical Background  The ASAS was originally developed by Garnett as part of a master’s thesis in 1993. The scale was further developed by Garnett and Attwood and presented at a conference in Australia in 1998. Only one other scale existed specific to the higher functioning end of the spectrum, viz., the Autism Spectrum Screening Questionnaire (ASSQ) developed by Ehlers and Gillberg in Sweden in 1993. Owing to limited knowledge about Asperger’s syndrome among professionals at this time,

in 1993. Owing to limited knowledge about Asperger’s syndrome among professionals at this time, coupled with the sometimes subtle presentation of features, many children were not being identi-fied as warranting referral to specialist assessment services. Developing screening measures was one way to assist in the identification of possible fea-tures and abilities consistent with the condition in order to make appropriate onward referrals. While screening measures, such as the ASAS, were

in order to make appropriate onward referrals. While screening measures, such as the ASAS, were overinclusive, they could facilitate the process whereby possible cases were not missed. In the first instance, the ASAS was developed for use with primary school children. Garnett and Attwood (2006) revised the original scale and adapted it for use with 5- to 18-year-olds (ASAS-R). The ASAS-R was effectively a new measure of core dimensions of Asperger’s syn-drome. Garnett was especially interested

a new measure of core dimensions of Asperger’s syn-drome. Garnett was especially interested in the association of Asperger/autism symptomatology (AAS) with the psychological health of children and adolescents who had an autism spectrum con-dition (Garnett 2007). She also sought to evaluate the association between family and peer relation-ships with psychological health of this group and the level of AAS in those with a diagnosis. Garnett conducted a validation study, the results of which were

of AAS in those with a diagnosis. Garnett conducted a validation study, the results of which were presented in an unpublished Ph.D. in 2007. The ASAS has been translated into German, and this version has been validated on a German sample of 51 children (Melfsen et al. 2005). It has been used to examine sex differences in comorbidity and clinical presentation in a Pol-ish sample of adolescents (Rynkiewicz and Lucka 2018).

### Psychometric Data  Limited data exist on the psychometric properties of the original measure (Thabtah and Peebles 2019). Table 1 gives the areas evaluated by the ASAS.

| Behavior/Skill Areas | Other Characteristics | |---|---| | Social and emotional abilities | Sensory | | Communication skills | Flapping/rocking | | Cognitive skills | High pain threshold | | Specific interests | Delayed speech | | Movement skills | Unusual facial expressions/tics |  In the original study (Garnett, unpublished master’s thesis, 1993), ASAS ratings were pro-vided for 60 children and adolescents (3–19 years). Each group consisted of 20 children: (1) diagnosed with AS, (2)

and adolescents (3–19 years). Each group consisted of 20 children: (1) diagnosed with AS, (2) clinical group with mixed diagnosis, and (3) typically developing controls. In addition, participants were assessed for level of receptive language. Multivariate analysis of covariance (MANCOVA) was then conducted for each area score by diagnosis with the receptive language score as the covariate. The nonclinical and AS groups were found to be statistically significantly different in each area to

The nonclinical and AS groups were found to be statistically significantly different in each area to <0.0001. Discriminant function analysis revealed that the ASAS accurately predicted membership of the groups: 90% for AS, 65% for the mixed clin-ical group, and 100% for the control group. No further data were available on test-retest reliability, internal consistency, or discriminant validity of the scale. Small sample sizes and no formal testing as a screening instrument were raised as

of the scale. Small sample sizes and no formal testing as a screening instrument were raised as weaknesses in the scale. The ASAS was translated into German, and the scale was validated in a study by Melfsen et al. (2005). Mothers of children who were inpa-tients at a local psychiatric hospital were asked to participate. Three groups of children were rated on the ASAS (German version), viz., AS group (18), referred for assessment but not diagnosed (18), and a group with mixed psychi-atric

AS group (18), referred for assessment but not diagnosed (18), and a group with mixed psychi-atric conditions (15). Melfsen et al. (2005) report ANOVA results which indicate that the scale successfully differentiated between the three groups. Further stepwise discriminant analysis indicated that group membership was accurately predicted (60.78%). On the basis of these findings, the authors concluded that the ASAS was a useful screening instrument for children with Asperger’s syndrome. The

that the ASAS was a useful screening instrument for children with Asperger’s syndrome. The authors have conducted reliability and validity studies on the most recent version of the ASAS, but these are not yet available. Further-more, these data effectively relate to a different measure with a different purpose. The proposed revised measure aimed to assess five dimensions of AS to provide information on severity in each dimension and would therefore be helpful to assist in guiding treatment

on severity in each dimension and would therefore be helpful to assist in guiding treatment postdiagnosis (Garnett, per-sonal communication, 2011). Since the initial development of the ASAS, there has been a significant increase in screening and diagnostic tools. Garnett et al. (2013) focused on developing a tool that would provide a profile of individual symptomatology of ASD, that is, The Australian Scale for Autism Spectrum Con-ditions (ASASC). The authors conducted prelim-inary psychometric

Scale for Autism Spectrum Con-ditions (ASASC). The authors conducted prelim-inary psychometric evaluation of the measure and confirmed that the 5-subscale measure mapped reasonably well onto to the two domains of ASD in the DSM-5. While the measure did not aim to serve as a screening tool, the authors reported positive indications that the ASASC may have benefits of identifying autism in addition to the core purpose of (i) identifying an autism profile, including strengths and difficulties to

to the core purpose of (i) identifying an autism profile, including strengths and difficulties to target in intervention, and (ii) providing indicators of change during and following intervention. The authors suggest further replication and validation studies.

### Clinical Uses  As per the current range of screening measures for children, adolescents, and adults, the ASAS con-tinues to serve the clinical purpose of identifying those children and adolescents who are most at risk of having an autism spectrum condition. It is not evident from the authors whether the ASAS has been replaced by the ASASC. Not unlike diagnostic instruments, screening instruments may not identify those who appear to have more subtle difficulties and differences, such as

may not identify those who appear to have more subtle difficulties and differences, such as girls, and those of very significant cognitive abilities. In addition, perhaps in a high-risk family, where others may be affected more significantly, the identified child’s features or behaviors are not registered as severe, hence not deemed necessary to assess further. While the ASAS was one of the earliest attempts at screening for Asperger’s syndrome in children, an increasing range of screening tools is

at screening for Asperger’s syndrome in children, an increasing range of screening tools is now available to identify possible ASD. These cover various age ranges, and while some, like the ASAS, may be completed by laypersons, others are clinician-rated scales. Nonetheless, in clinical practice, these are not infrequently employed alongside other measures, hence pro-viding a wealth of information from a range of sources, that is, clinicians, parents, and teachers. With the shift to ASD as the

from a range of sources, that is, clinicians, parents, and teachers. With the shift to ASD as the umbrella diagnostic category, there has been an increase in tools that evaluate autistic profiles such as females versus males (e.g., GQ-ASQ).

* Autism Spectrum Quotient (AQ-child) * Checklist for Autism in Toddlers (18–24 months) * Child Behavior Checklist (36–71 months) * Childhood Autism Spectrum Test (4–11 years) * Developmental Behavior Checklist – Early Screen (20–51 months) * Gilliam Autism Rating Scale Third Edition (36–71 months) * Modified Checklist for Autism in Toddlers (17–48 months) * Screening Tool for Autism in Toddlers (24–35 months) * Social Communication Questionnaire (48 months; mental age > 24 months) While a small

months) * Social Communication Questionnaire (48 months; mental age > 24 months) While a small validation study in Germany (Melfsen et al. 2005) has confirmed the ASAS’s ability to differentiate between three clinical groups, viz., children with a known diagnosis of AS, children referred for suspected AS, and those referred for other psychiatric conditions, little cur-rent information is available regarding the scale’s current usefulness as a screening measure or how it compares with other

regarding the scale’s current usefulness as a screening measure or how it compares with other screening measures. Fur-thermore, lack of clear cutoff scores or indication of the meaning of a particular score renders the instrument difficult to interpret in its current form. Since the scale does not require training or qual-ification and could hence be employed by clini-cians and laypersons alike, the lack of clarity about screening scores and their meaning contrib-utes to the difficulties with

the lack of clarity about screening scores and their meaning contrib-utes to the difficulties with interpretation. None-theless, if employed as a simple guide prior to discussion about full screening and assessment, the brief, structured scale facilitates an initial eval-uation of the child’s behavior and presentation within clear areas consistent with the autism spectrum. The ASAS has undergone significant revi-sions, and it would appear that the purpose of the various versions is necessarily

significant revi-sions, and it would appear that the purpose of the various versions is necessarily different. The ASAS has not been replaced by the ASAS-R, and the former still serves as a screening instrument (Garnett, personal communication, 2011). Garnett has suggested the potential value of the ASAS-R in providing directions for intervention. When used in conjunction with additional data regarding family cohesion and peer victimization, this may assist in selecting areas for treatment.

regarding family cohesion and peer victimization, this may assist in selecting areas for treatment. However, she notes the need for further research to establish the tool’s sensitivity to clinical change. The ASASC appears to be fulfill this objective.

### Autism  ### Definition  The term “autism” (or autistic) has had several uses in psychiatry. Originally introduced by Bleuler to describe self-centered thinking in schizophrenia, he modified the term from the Greek word for self. In the 1930s, the first child psychiatrist, Leo Kanner, became aware of a group of children who had unusual patterns of social engagement and learning. He published his first 11 cases in 1943 using the term “early infantile autism” to emphasize the apparent

his first 11 cases in 1943 using the term “early infantile autism” to emphasize the apparent con-genital lack of social engagement which he believed to be one of the two cardinal features of the disorder (the other being insistence on same-ness/resistance to change). Although children with features suggestive of autism had been described for centuries (likely including some feral children like Victor the Wild Boy in France), Kanner was the first to describe the syndrome in detail. Interestingly,

the Wild Boy in France), Kanner was the first to describe the syndrome in detail. Interestingly, independent of Kanner’s work, the Austrian medical student Hans Asperger also used the term in his description of a similar condition in highly verbal but socially isolated and eccentric boys. Although he initially emphasized the unique aspects of the condition, Kanner’s use of the term also suggested a link to schizophrenia given Bleuler’s earlier use of the term, and indeed until 1980 autism was

a link to schizophrenia given Bleuler’s earlier use of the term, and indeed until 1980 autism was not recognized as an official diagnosis and children with what today would be said to have autism were instead thought to exhibit a form of childhood schizophrenia. By the late 1970s, this state of affairs changes with rec-ognition of the uniqueness of autism (based on clinical features, onset, family history, neurobio-logical, and genetic findings) led to its explicit recognition as a category of

history, neurobio-logical, and genetic findings) led to its explicit recognition as a category of disorder distinct from schizophrenia. As time has gone on, the condition now known as Autism Spectrum Disorder has evolved in terms of the stringency of the specific diagnostic concept. At the same time a growing body of both behavioral and genetic work suggests that a broader spectrum of the condition clearly exists likely paralleling the awareness of the diverse number of genes that might

condition clearly exists likely paralleling the awareness of the diverse number of genes that might contribute to the path-ogenesis of the condition. As work on the social neuroscience of autism has increased, the insight of Kanner in using this term to characterize the condition is increasingly appreciated.

### Autism Acceptance and Mental Health  ### Definition  Acceptance, appreciation, and acknowledgement of autism as part of a person, both in terms of self-acceptance and how accepting other people are. Perceiving a lack of acceptance could relate to poorer mental health for autistic people.

### Historical Background  Historically, the narratives around autism often focus on deficits, perhaps stemming from its first conception where Kanner (1943) described “autistic disturbances” and autistic behaviors are often pathologized as not “normal” (Milton and Bracher 2013). For many years, autism research has been dominated by biological studies (e.g., genetic and neuroscientific research) and treat-ment or intervention studies (Pellicano et al. 2014) which likely proliferates the narrative

treat-ment or intervention studies (Pellicano et al. 2014) which likely proliferates the narrative that autism is something which should be cured rather than accepted. In more recent years, the ethics behind such autism research has been questioned (Pellicano and Stears 2011), with growing acknowledgment of the need for a shift in the narrative (Gillespie-Lynch et al. 2017) as well as increased participatory research whereby autistic people are meaningfully included in autism research

participatory research whereby autistic people are meaningfully included in autism research (Fletcher-Watson et al. 2019). The shift in narrative and the idea of accepting autism as an integral part of a person is related to the concept of neurodiversity, a term first credited to Judy Singer (1999). The neurodiversity move-ment celebrates diverse autistic thinking, views autism as part of identity, and is opposed to autism “cures” (Kapp et al. 2013) while still acknowledg-ing the difficulties

and is opposed to autism “cures” (Kapp et al. 2013) while still acknowledg-ing the difficulties autistic people face and not minimizing disability (Den Houting 2019). This movement relates to the social model of disability (Shakespeare 2006) which proposes that disabil-ity can be the result of incompatibility with the environment and society. For example, one could argue that society’s lack of acceptance of autism could be a significant factor in the underemploy-ment of autistic people rather

acceptance of autism could be a significant factor in the underemploy-ment of autistic people rather than autistic charac-teristics preventing employment. Generally, these approaches highlight that autism is not perceived to be currently accepted within society. This poor acceptance could relate to the mental health of autistic people. Autism itself is not a mental health condition, but autistic individuals experience high rates of mental health difficulties, for example, depression (Stewart et

individuals experience high rates of mental health difficulties, for example, depression (Stewart et al. 2006), anxiety (Gillott and Standen 2007), social anxiety (Maddox and White 2015), and suicidal behavior and ideation (Cassidy et al. 2014). Prevalence estimates vary widely, for example, between 28% and 86% of autistic people have been suggested to experience diagnosable mental health conditions (Howlin and Magiati 2017). Despite this variability, it is asserted that autistic people

conditions (Howlin and Magiati 2017). Despite this variability, it is asserted that autistic people experience mental health difficulties at a higher rate than non-autistic people (Lai et al. 2019). These mental health difficulties make everyday life more challenging for autistic people and likely contribute to poorer quality of life (Robertson 2009). The reasons why mental health conditions are highly prevalent in autism are not well understood and may depend on the specific mental health

are highly prevalent in autism are not well understood and may depend on the specific mental health condition. Further, it is unlikely that the high prevalence is caused by one single factor, but a myriad of both internal and external contributing factors which enhance the risk of poor mental health. Internal factors might include genetic predispositions or certain cognitive biases. For example, in anxiety in autism, a mode of thinking known as “intolerance of uncertainty” has been found to link

anxiety in autism, a mode of thinking known as “intolerance of uncertainty” has been found to link to increasing anxiety (Boulter et al. 2014). External factors might include aspects of the world dependent on other people, such as lack of social support, or the sensory environment – for example, hypersensitivity to the sensory environ-ment has been noted to play a role in heightening anxiety in autism (Green and Ben-Sasson 2010). More recently, the role of autism acceptance has been examined as

(Green and Ben-Sasson 2010). More recently, the role of autism acceptance has been examined as an external contributing factor to poor mental health in autism.

### Current Knowledge  Autistic adults tend to perceive that within society, they are not accepted for being autistic, and a lack of perceived acceptance from others relates to higher symptoms of depression and stress (Cage et al. 2018). Robertson et al. (2018) found that autistic adults experiencing high rates of anxiety discussed how acceptance from others helped mitigate some of their anxiety symptoms, but they continued to fear the judgment of others. Participants in Cage et al.’s (2018)

symptoms, but they continued to fear the judgment of others. Participants in Cage et al.’s (2018) study described how they were often misunderstood or even completely dismissed by others and they used tactics to hide their autistic characteristics and therefore “pass” within society unnoticed as an autistic person. These tactics have been con-ceptualized as “camouflaging” (Hull et al. 2017), and the use of camouflaging has been argued as a means of protecting the self against nonacceptance and

the use of camouflaging has been argued as a means of protecting the self against nonacceptance and discrimination from others (Cage and Troxell-Whitman 2019). Further, high rates of camouflaging have been found to relate to poorer mental health (Hull et al. 2019). Trying to fit into a predominantly non-autistic and non-accepting society is thus a mentally exhausting endeavor. Autism acceptance can also be measured by examining antonymous concepts such as autism-related stigma. Stigma is the

can also be measured by examining antonymous concepts such as autism-related stigma. Stigma is the attachment of negative attitudes and stereotypes toward a group of people, and the discreditation and discrimination of the group (Goffman 1990), in this case autistic people. Botha and Frost (2018) argue that autistic people are a stigmatized minority group and are subject to “minority stress” – in other words, the stress asso-ciated with being labeled as part of a discriminated minority. Botha

other words, the stress asso-ciated with being labeled as part of a discriminated minority. Botha and Frost (2018) supported this minority stress model by finding that experiences of discrimination, concealment of autistic status, and internalized stigma related to poorer mental health in a sample of autistic adults. Together, this research suggests that perceived lack of acceptance in the form of stigma can have a negative relation-ship with mental health. Other research has examined the

of stigma can have a negative relation-ship with mental health. Other research has examined the self-acceptance of autism, which can also be thought of in terms of autistic identity. The terminology used to describe autism can be classified as either person-first (person with autism) or identity-first (autistic person). Kenny et al. (2016) found in a sample of British autistic participants that the majority preferred identity-first terminology. The participants described how person-first

that the majority preferred identity-first terminology. The participants described how person-first terminol-ogy positioned autism as something separate to the self, when in fact autism colors every element of how the individual processes the world and was therefore an inseparable part of the person. Similarly, Kapp et al. (2013) found that stronger identification with an autistic identity was associ-ated with viewing autism more positively and as something that should not be “cured.” Further,

with viewing autism more positively and as something that should not be “cured.” Further, Kapp et al. (2013) noted that preference for identity-first language did not mean that these participants lessened the difficulties associated with autism. It is important to bear in mind that acceptance does not mean ignoring or reducing the everyday difficulties associated with autism, but rather to understand and acknowledge these, alongside autistic strengths (Den Houting 2019; Kapp et al. 2013). Research

and acknowledge these, alongside autistic strengths (Den Houting 2019; Kapp et al. 2013). Research has attempted to examine the links between self-acceptance, in terms of identifying with an autistic identity, and mental health. Cooper et al. (2017) measured autistic social iden-tity (i.e., identifying as part of the autistic com-munity) and mental health. They found that autistic identification could protect against anxi-ety and depression through promoting higher per-sonal self-esteem (the

could protect against anxi-ety and depression through promoting higher per-sonal self-esteem (the value placed on one’s self) and collective self-esteem (the value placed on autistic people as a group). In this way, identifying with the autistic community could protect against mental health problems through taking pride in being part of this community and potentially drawing on support from other autistic people. In a review and synthesis of qualitative literature, Kim (2019) noted links

other autistic people. In a review and synthesis of qualitative literature, Kim (2019) noted links between positive autistic self-identity and greater self-determination (an attitude toward being in control of one’s own life), which they suggest could link to better quality of life and ability to manage stress. Although the above research suggests that accep-tance of being autistic links to better mental health outcomes, it can be challenging to achieve self-acceptance, especially considering

mental health outcomes, it can be challenging to achieve self-acceptance, especially considering the dis-crimination and stigma experienced by autistic people.

As such, researchers have not only examined autistic people’s perceptions of acceptance but have tried to survey non-autistic people’s attitudes toward autism, to measure the levels of accep-tance within society. Knowledge about autism in Western populations is thought to be relatively good (Tipton and Blacher 2014) although some misunderstandings and misconceptions can still occur (Dillenburger et al. 2015) as well as many believing myths about autism (John et al. 2018). Autism-related stigma

et al. 2015) as well as many believing myths about autism (John et al. 2018). Autism-related stigma has also been measured, for example, as “openness” toward autism (Gardiner and Iarocci 2014) or the desire for social distance from autistic people (Gillespie-Lynch et al. 2015), with these studies finding that less stigma is associated with prior experience and contact with autistic people themselves. Notably, non-autistic people can falsely believe that they are more helpful toward autistic

Notably, non-autistic people can falsely believe that they are more helpful toward autistic people than they actually are (Heasman and Gillespie 2019), suggesting that non-autistic people likely attempt to provide socially desirable responses that pre-sent themselves in a positive light – thus survey measures of stigma are considered with caution. Experimental research has therefore looked at non-autistic people’s acceptance of autism through inventive means which may be less affected by social

people’s acceptance of autism through inventive means which may be less affected by social desirability than survey methods. For example, a growing body of research looks at the “first impressions” of autistic people. First impressions are the rapid judgments made about a person on first interacting with them (Ambady et al. 2000). One approach to test these first impressions is to ask observers to rate people they view in brief video clips. In one of Sasson et al.’s (2017) experiments, it was

to rate people they view in brief video clips. In one of Sasson et al.’s (2017) experiments, it was unknown to the observers that half of the people in the videos were autistic. Sasson et al. (2017) found that more negative judgments of the autistic people were formed, with autistic people rated as more awk-ward, less likeable, and attractive than non-autistic people, and there was less desire to hang out, talk to, or make friends with the autistic individuals. Interestingly, Sasson and

to hang out, talk to, or make friends with the autistic individuals. Interestingly, Sasson and Morrison (2019) found that labeling the video participants as autistic helped to improve first impressions. Further, Morrison et al. (2019) found that personal characteristics of the observers, such as pre-existing stigmatizing attitudes and knowledge about autism, could better explain poor first impressions than the characteristics of the autistic people in the videos. Together, these findings suggest

than the characteristics of the autistic people in the videos. Together, these findings suggest that non-autistic people have negative biases against autism, but with intervention non-autistic people could overcome their difficulties with accepting autistic people.

### Future Directions  More research is needed to find means of improv-ing autism acceptance in the non-autistic popula-tion. Interventions have been trialled within educational establishments – such as Gillespie-Lynch et al.’s (2015) online training for university students. Here, the training taught students about a range of different aspects including autistic strengths and difficulties, autism as a spectrum condition, etiology, and neurodiversity. After com-pleting the training, there were

as a spectrum condition, etiology, and neurodiversity. After com-pleting the training, there were improvements in knowledge and reductions in stigma toward autism. These findings are thus promising, with subsequent replications in non-Western countries such as Lebanon (Obeid et al. 2015) and Japan (Someki et al. 2018). Other anti-stigma interven-tions with school-aged girls have also shown prom-ise in teaching girls about autism, with associated reductions in stigma (Ranson and Byrne 2014).

in teaching girls about autism, with associated reductions in stigma (Ranson and Byrne 2014). Often research finds that girls and women tend to be more open toward autism (e.g., Cage et al. 2019; Nevill and White 2011); thus future research needs to understand why this is the case and what can be done to improve male’s attitudes toward autism. Further, more research is needed on interventions outside of educational settings as well as longitu-dinal studies to test whether the effects of

outside of educational settings as well as longitu-dinal studies to test whether the effects of interven-tions persist beyond the short term. Additionally, the difficulties in autistic to non-autistic interactions can be thought of in terms of a “double empathy problem,” which can be described as interactional clashing between autistic and non-autistic people, with neither group understanding one another well (Milton et al. 2018). Mitchell et al. (2019) argue that the double empathy problem

one another well (Milton et al. 2018). Mitchell et al. (2019) argue that the double empathy problem should be considered in tandem with the mental health difficulties experi-enced by autistic people. It seems that autistic people expend significant effort to understand and fit in to the predominantly non-autistic world, and this can be mentally and physically exhausting (Cage and Troxell-Whitman 2019). Achieving acceptance may involve reducing the “gap” between autistic and non-autistic

2019). Achieving acceptance may involve reducing the “gap” between autistic and non-autistic perspec-tives and non-autistics putting in equal effort to understand autistic perspectives. Research on the double empathy problem is in its infancy but shows promise (Milton et al. 2018). It should also be carefully considered how current practices in education, the media, healthcare and research might be perpetuating stigma. For example, Bottema-Beutel et al. (2018) discuss how social skills training

perpetuating stigma. For example, Bottema-Beutel et al. (2018) discuss how social skills training may implicitly enforce stigma and the necessity of camouflaging, since this training suggests that autistic people need to conform to a non-autistic standard of social communication. Instead, they argue that autistic people need to be able to explore their authentic selves and critically appraise non-autistic social rules, but more research is needed in this area. Furthermore, the narratives

non-autistic social rules, but more research is needed in this area. Furthermore, the narratives perpetuated in the media about autism are also thought to enforce stigma (Holton et al. 2014). Health practitioners too – trained predom-inantly in terms of a medical or deficit model of autism – need to acknowledge their role in pro-moting autism acceptance in those just diagnosed as well as in families and caregivers (Nicolaidis 2012). Future research should examine the impact of training,

families and caregivers (Nicolaidis 2012). Future research should examine the impact of training, particularly using a social model or neurodiversity approach, on reducing stigma within professionals who encounter autistic peo-ple in their work. Listening to – and including – autistic perspec-tives within research could be vital in improving autism acceptance. Research which does meaning-fully involve autistic people is growing, with several researchers (autistic and non-autistic) developing

involve autistic people is growing, with several researchers (autistic and non-autistic) developing frameworks and guidelines for this type of research (Chown et al. 2017; Fletcher-Watson et al. 2019). For example, Chown et al. (2017) outline how research should be aligned with the priorities of autistic people themselves, that the social model of disability should be at the research’s core and out-comes should center around improving the everyday lives of autistic people. Similarly,

core and out-comes should center around improving the everyday lives of autistic people. Similarly, Fletcher-Watson et al. (2019) highlight the need for elements such as empathy, authenticity, and respect within autism research. Researchers should consider how these guidelines could be incorporated into their future work and how their research supports the aim of improving autistic people’s lives and the inclusion of autistic people in society. By striving to make the world a more accessi-ble

and the inclusion of autistic people in society. By striving to make the world a more accessi-ble place for autistic people, we may see concur-rent improvements in autistic people’s mental health. Of course, mental health is affected by numerous factors, and more research is needed to fully understand mental health in autism and appropriate treatments to reduce these difficulties. Ultimately, autistic people must be accepted for being autistic people, not as camouflaged versions of themselves.

### Autism and Epilepsy  ### Introduction  Autism spectrum disorders (ASD) and epilepsy are both clinically heterogeneous entities whose co-occurrence has long been recognized to exist at a frequency that is greater than could be predicted by chance alone. This observation has led to interest in the possibility of shared causal pathways for both disorders and raises the possibility of future novel interventions that could impact the course of both conditions. Further, the co-occurrence of the

interventions that could impact the course of both conditions. Further, the co-occurrence of the disorders pre-sents several diagnostic and treatment chal-lenges and controversies. This encyclopedia entry will provide an overview of terminology, epidemiology and etiology, clinical expression, available findings on developmental course, issues in differential diagnosis, and treatment considerations.

### Categorization  ### Terminology  Terms associated with autism include autism spectrum disorder (ASD), high-functioning autism (HFA), pervasive developmental disorders (PDD), and infantile autism. ASD are behavior-ally defined disorders, with literature still utilizing these terms despite the presentation of revised diagnostic criteria in the DSM-5. These terms are defined in introductory chapters in this ency-clopedia. Key terms associated with epilepsy include seizure disorder and pediatric

in this ency-clopedia. Key terms associated with epilepsy include seizure disorder and pediatric seizure disorder. A seizure is commonly understood as uncontrolled electrical activity in the brain, which may produce a physical convulsion, minor physical signs, changes in consciousness, thought disturbances, sensory disturbances, or a combination of symptoms. While the terms sei-zure disorder and epilepsy are generally used interchangeably, epilepsy is more formally defined as having two or more

epilepsy are generally used interchangeably, epilepsy is more formally defined as having two or more seizures within a set period of time, most often within 3 years, for which there is no other identifiable cause such as mass lesion, head trauma, infection, toxic exposure, or metabolic derangement (Matson and Neal 2009).

### Epidemiology  ### Epidemiology and Etiology  The prevalence of autism in the pediatric popula-tion is approximately 14.6 cases per 1,000 chil-dren, with a national rate of approximately 1 in 68 cases at age 8 years. Estimated prevalence was significantly higher for boys at about 23.6 per 1,000, than for females at about 5.3 per 1,000 (Christensen et al. 2016). These rates are higher among non-Hispanic white children at about 15.5 per 1,000 than for non-Hispanic black children (13.2 per

non-Hispanic white children at about 15.5 per 1,000 than for non-Hispanic black children (13.2 per 1,000) and Hispanic children (10.1 per 1,000); however, it is suspected that these differ-ences in rates are related more to access to care as opposed to true differences in prevalence across racial and ethnic lines (Durkin et al. 2010; Morbidity and Mortality Weekly Report 2012). Further, autistic traits are about 4.5 more com-monly seen in males, with a staggering rate of 1 in 42, than for

traits are about 4.5 more com-monly seen in males, with a staggering rate of 1 in 42, than for females (1 in 189) (Christensen et al. 2016). In the general pediatric and adult population, the prevalence of epilepsy is 2–3% (Canitano 2007), with recent estimated lifetime rates of about 10.2 per 1,000 (Russ et al. 2012). The prevalence of having epilepsy and autism as co-occurring, or perhaps comorbid conditions ranges widely from 8% to 30% (Mouridsen et al. 2013; Russ et al. 2012; Spence and

conditions ranges widely from 8% to 30% (Mouridsen et al. 2013; Russ et al. 2012; Spence and Schneider 2009; Tuchman et al. 2010), with children with ASD having a 7- to 10-fold increased odds com-pared to controls for having epilepsy (Jokiranta et al. 2014; Tuchman et al. 2013). Viscidi et al. (2013) found that the prevalence of epilepsy in children with ASD was about 12–13% for chil-dren ages 2–17, with rates rising to about 26% for adolescents age 13 and above. For children with epilepsy,

2–17, with rates rising to about 26% for adolescents age 13 and above. For children with epilepsy, about 30% will eventually have a diag-nosis of ASD (Keller et al. 2017), and individuals with epilepsy diagnosed in childhood are at sig-nificant risk for later manifestation of ASD (Sundelin et al. 2016). While there does not appear to be a specific form of epilepsy that is present in children with ASD, epilepsy does appear to be present more frequently in individ-uals with ASD and Intellectual

ASD, epilepsy does appear to be present more frequently in individ-uals with ASD and Intellectual Disability, with the rates increasing with the severity of the Intellec-tual Disability (Jokiranta et al. 2014). Of signifi-cant concern, there also is increased risk for mortality for individuals with ASD and epilepsy, particularly in the presence of an intellectual dis-ability (Woolfenden et al. 2012).

### Etiological Mechanisms  The frequency of co-occurrence of these two dis-orders has led to interest in the possibility of shared etiological mechanisms in seizure disor-ders and ASD. Proposed theories of shared causality have been related to the deleterious effects of the seizures themselves and associated imbalances between neuronal excitation and inhi-bition (Stafstrom and Benke 2015), with a partic-ular focus on impaired GABAergic signalizing as being a common denominator for

2015), with a partic-ular focus on impaired GABAergic signalizing as being a common denominator for co-occurring ASD and epilepsy (Kang and Barnes 2013; Tuchman et al. 2013). Additionally, contem-porary mechanistic understandings of several key neurodevelopmental disorders have led to new theories about the shared role of impaired plasticity during development (Keller et al. 2017). For example, portions of the temporal lobe of the brain and associated neural pathways are likely to be key brain

of the temporal lobe of the brain and associated neural pathways are likely to be key brain regions in the complex network that has been described as “the social brain.” The tem-poral lobe has long been a suspected region of importance because of the relative frequency of temporal lobe epilepsy both among patients with epilepsy with social challenges and among those with ASD and epilepsy. Animal research using mouse models has demonstrated that mice with induced temporal lobe seizures exhibited

using mouse models has demonstrated that mice with induced temporal lobe seizures exhibited less social behavior than control mice (Marin et al. 2008). Neuroimaging studies in patients with tem-poral lobe epilepsy have provided evidence show-ing damage to other recognized social brain structures in this network, such as the hippocampus (Dager et al. 2007). Further, such studies also have begun to show a linkage between aberrant neural migration over the course of neurodevelopment (Blackmon

to show a linkage between aberrant neural migration over the course of neurodevelopment (Blackmon 2015) and general neurological vulner-ability (Gilby and O’Brien 2013) to seizures in individuals with ASD. Another set of examples wherein a potential shared mechanism for both ASD and seizure dis-orders has begun to be explored comes from the study of several recognized genetic syndromes that are associated with both autism features and seizures (Keller et al. 2017; Lee et al. 2015). In this

associated with both autism features and seizures (Keller et al. 2017; Lee et al. 2015). In this regard, fragile X, tuberous sclerosis com-plex, and Rett’s syndrome all have been proposed as possible models of overlapping causality in ASD and epilepsy/seizures. For example, Rett’s syndrome is a neurodegenerative disorder that affects girls and is currently understood to be caused by mutations in the gene encoding methyl-CpG binding protein 2 (MeCP2). Rett’s syndrome is characterized by

in the gene encoding methyl-CpG binding protein 2 (MeCP2). Rett’s syndrome is characterized by regression of verbal skills along with repetitive hand motions that usually begin to occur between 6 and 18 months of age (Brooks-Kayal 2010). Up to 90% of Rett’s syndrome patients develop seizures (Canitano 2007). Tuberous sclerosis has been associated with both epilepsy and autism (Jeste et al. 2016). The prevalence of tuberous sclerosis in the gen-eral population is around 1 case per 10,000 to

The prevalence of tuberous sclerosis in the gen-eral population is around 1 case per 10,000 to 20,000 (Sherpherd 1999). Around 1% of children with autism will have tuberous sclerosis (Harrison and Bolton 1997), and approximately 80% of patients with tuberous sclerosis will also have seizures (Canitano 2007). With respect to epi-lepsy, tubers are thought to be foci of epileptic activity, and many of the ASD symptoms have been linked to tubers found in the temporal lobes of the brain (Bolton et

of the ASD symptoms have been linked to tubers found in the temporal lobes of the brain (Bolton et al. 2002). Finally, fragile X syndrome is the most common form of inherit-able intellectual disability, and frequently mani-fests with co-occurring autism and seizures. This syndrome is caused by excessive CGG trinucleo-tide repeats on the X chromosome, methylating either in whole or in part the Fragile X Mental Retardation gene leading to many of the pheno-typic features associated with fragile X

X Mental Retardation gene leading to many of the pheno-typic features associated with fragile X syndrome (Brooks-Kayal 2010). With approximately one third of individuals with fragile X syndrome showing co-occurring ASD, this syndrome pro-vides a clear single gene disorder for examining not just autism but its related comorbidity. While exact mechanisms for the behavioral manifestations remain unknown in each of these disorders, there has been an expanding knowledge base relating to presumed

unknown in each of these disorders, there has been an expanding knowledge base relating to presumed causal genetic defect (s) and their downstream molecular effects. Resultant impaired inhibitory/excitatory regula-tion and impaired neuroplasticity have been proposed as a possible common explanation for seizures and ASD-related behaviors (Brooks-Kayal 2010). Further, a number of other gene mutations have been associated with ASD, Intellectual Disabilities, and epilepsy/seizures including the

have been associated with ASD, Intellectual Disabilities, and epilepsy/seizures including the genes encoding neuroligins, neurexins, arestelles region X-linked (ARX), and neuropilin-2 (Brooks-Kayal 2010).

### Clinical Expression and Pathophysiology  ### Type of Seizures  There are several classification schemas for sei-zure types and epilepsy. The most commonly used classification is based on the broad categories of generalized seizure onset versus focal onset, each with subcategorizations based on various clinical features and origin of seizure activity. Further, there are numerous recognized epilepsy syn-dromes. Seizure types in individuals with ASD are highly variable, and multiple seizure

syn-dromes. Seizure types in individuals with ASD are highly variable, and multiple seizure types in the same individual are not uncommon. It is important to note, though, that the prevalence of particular seizure types among those with both disorders does not seem to differ significantly from the distribution of seizure types in epilepsy patients in general (Sternberg 2003).

### Seizure Location  There is a suggestion that seizure location may point to a relationship with autistic features or autism. In epilepsy in which the seizure activity manifests from the frontal lobe, behavioral changes may include irritability, altered mood, subtle changes in alertness, associated attention dysregulation, and cognitive rigidity features often associated with ASD (Fohlen et al. 2004). Seizures originating in the temporal lobe may be associated with autistic features or

et al. 2004). Seizures originating in the temporal lobe may be associated with autistic features or autism (Hamiwka and Wirrell 2009) in that the individual may present with affective blunting, odd or impaired language functions, including impair-ments in core language functions or pragmatics, and poor recognition of faces.

### Epilepsy Syndromes  The relationship between ASD and seizures also can be understood by considering the presence of an epilepsy syndrome. There are numerous epi-lepsy syndromes, and those that are believed to contribute to progressive disturbance in cerebral function may be termed “epileptic encephalopa-thies.” These disorders begin early in life and are often associated with regression of cognitive, lan-guage, and other neurodevelopmental functions. Many children with these disorders may

lan-guage, and other neurodevelopmental functions. Many children with these disorders may present with features of ASD or they may in fact meet diagnostic criteria for an ASD (Nabbout and Dulac 2003: Nabbout and Dulac 2008). Among these syndromes, infantile spasms (IS), Landau-Kleffner syndrome (LKS), and epilepsy with continuous spike-waves during slow-wave sleep (CSWS) are most strongly associated with ASD symptomology (Ballaban-Gil and Tuchman 2000). In IS, the association with ASD may as

with ASD symptomology (Ballaban-Gil and Tuchman 2000). In IS, the association with ASD may as high as 35%, and this risk seems to increase in the presence of a severe intellectual disability, struc-tural brain lesions, and ongoing epileptiform activ-ity in frontal brain regions (Kayaalp et al. 2007; Saemundsen et al. 2007, 2008). LKS and CSWS have overlapping symptoms in relationship to sei-zure presentation, and both manifest features that overlap with ASD symptoms. The failure or regres-sion

presentation, and both manifest features that overlap with ASD symptoms. The failure or regres-sion of language development in these disorders often leads to confusion with autistic regression that is reported in children with and without under-lying seizure disorders (Canitano 2007).

### Age of Seizure Onset  The relationship between ASD and seizures/epi-lepsy can also be investigated by considering the age of seizure onset. It has been theorized that epilepsy with a late onset during adolescence is brought on by the hormonal fluctuations asso-ciated with puberty (Gillberg 1991). One study of children with autism showed that seizure activ-ity peaks between 3 and 10 years of age (Matson and Neal 2009). Other studies, however, have suggested that epilepsy has two peaks in

age (Matson and Neal 2009). Other studies, however, have suggested that epilepsy has two peaks in children with autism: one during infancy and another dur-ing adolescence (Volkmar and Nelson 1990). The peak during infancy may correlate with the peak of seizure activity that is seen in children with epilepsy without autism, while the second peak during adolescence may be unique to children with autism (Nomura et al. 2010). Recent data have challenged this bimodal distribution, suggesting that

autism (Nomura et al. 2010). Recent data have challenged this bimodal distribution, suggesting that the primary peak occurs by 6 years of age (Jokiranta et al. 2014).

### Intellectual Functioning  The range of the overall level of intellectual func-tioning in individuals with ASD is quite large and variable; however, it has been well established that in populations of children with epilepsy, the risk of autism or autistic features is increased among those with the lowest intellectual function-ing (Hamiwka and Wirrell 2009; Jokiranta et al. 2014). Among populations of children with ASD, those with severe intellectual disability, severe receptive language

of children with ASD, those with severe intellectual disability, severe receptive language deficits and motor dysfunction (i.e., those with more severe autism symptoms) have the highest risk of epilepsy (El Achkar and Spence 2015; Mulligan and Trauner 2014; Tuchman et al. 2009); and, conversely, children with ASD and epilepsy manifest more cognitive and neuropsychiatric difficulties than those with-out epilepsy (Viscidi et al. 2014; Weber and Gadow 2017).

### Developmental Course  When considered independently, the developmen-tal course, severity, and outcomes of individuals with ASD and epilepsy are highly variable and dependent on numerous factors. To date, there are scant empirical data related to the moderating or mediating effects of epilepsy and ASD on one another in relation to developmental course and outcomes. In general, children with comorbid or co-occurring ASD and seizures/epilepsy have lower IQ, lower adaptive behavior, more

comorbid or co-occurring ASD and seizures/epilepsy have lower IQ, lower adaptive behavior, more emo-tional problems, and have more frequent use of psychiatric medications (Matson and Neal 2009). Also, a higher rate of seizure activity has been linked to decreased intellectual functioning (Jokiranta et al. 2014; Matson and Neal 2009) but is unclear how medications or other factors (e.g., other neurological factors) may be contributing to this suspected association. Additionally, the pres-ence of

factors) may be contributing to this suspected association. Additionally, the pres-ence of temporal lobe seizures has been described as a poor prognostic indicator in relation to social adaptation among individuals with ASD and sei-zure disorders (Matson and Neal 2009). As noted above, the notion that children with comorbid ASD and seizure disorders have more pronounced social impairment when compared to children with ASD who do not have seizures has been proposed, but this issue is only

compared to children with ASD who do not have seizures has been proposed, but this issue is only beginning to be evaluated (Tuchman 2013).

### Evaluation and Differential Diagnosis  ### Issues in Differential Diagnosis  Early diagnosis and treatment of both epilepsy and autism are crucial in order to maximize devel-opment and quality of life (Tuchman et al. 2010). Early identification and treatment allow for the optimal usage of all therapies and resources available. The potential co-occurrence of these disorders does raise several important issues in differential diagnosis. For example, the mainstay of evaluation in seizure

important issues in differential diagnosis. For example, the mainstay of evaluation in seizure disorders is the electroen-cephalogram (EEG), but a seizure evaluation also can include metabolic and genetic components. It is important to note that abnormal EEG activity can be seen in 7–28% of children with autism, but without any other symptoms of epilepsy (Youroukos 2007). On the other hand, high-functioning individuals with autism may be missed when presenting for epilepsy treatment (Matsuo et

individuals with autism may be missed when presenting for epilepsy treatment (Matsuo et al. 2010). The association between autism and seizures has led the Committee on Children with Disabilities of the American Academy of Pediatrics to recommend prolonged sleep-deprived EEG in children with ASD show-ing developmental regression or in those where there is a high suspicion of subclinical seizures (American Academy of Pediatrics 2001). Due to the current dearth of empirical knowledge about

(American Academy of Pediatrics 2001). Due to the current dearth of empirical knowledge about subclinical epileptiform activity and its treatment, universal screening via EEG for all children with ASD has not yet been recommended as a standard of care (Johnson and Myers 2007), but its routine use has been suggested (Swatzyna et al. 2017). Another important area of concern relates to the convergence of sleep problems in the populations of children with ASD and epilepsy/seizures. Sleep

convergence of sleep problems in the populations of children with ASD and epilepsy/seizures. Sleep difficulties are common among individuals with neurologic disorders in general as well as in those with ASD and seizure disorders (Malow 2004). Screening for sleep problems and formal sleep evaluations (based on clinical need) are often important for individuals presenting with comorbid ASD and epilepsy (Accardo and Malow 2017). Sleep disorders have significant implica-tions for behavioral

and epilepsy (Accardo and Malow 2017). Sleep disorders have significant implica-tions for behavioral functioning and quality of life beyond challenges associated with the underlying disorder (Clarke et al. 2005), such as creating daytime sleepiness, increased irritability, less efficient cognitive functioning (potentially in addition to cognitive impairment), and de-creased seizure threshold. Further, sleep studies in children with ASD and sleep problems in rare instances may elucidate a

Further, sleep studies in children with ASD and sleep problems in rare instances may elucidate a previously unrecognized seizure disorder related to sleep (Accardo and Malow 2017; Malow 2004).

### Treatment Considerations  Early recognition of ASD and co-occurring epi-lepsy is important in that it is hoped that develop-mental outcomes can be improved via early treatment. Medication is a first-line treatment in children with epilepsy. The chief goal here is to eliminate (or lessen) all seizure activity while minimizing medication-related side effects such as behavioral problems or weight gain. In autism, psychosocial and behavioral interventions are commonly used as first-line

or weight gain. In autism, psychosocial and behavioral interventions are commonly used as first-line interventions for behavioral symptoms. In autism, medication treat-ment is used as an adjunctive therapy to lessen symptoms of inattention, hyperactivity, repetitive behaviors, impulsivity, irritability, and aggression (Tuchman et al. 2010). Antiepileptic medications (AEDs) are the mainstay of treatment in epilepsy. Several AEDs are used commonly in general psychiatric practice due to beneficial

in epilepsy. Several AEDs are used commonly in general psychiatric practice due to beneficial psychotropic properties, most notably in mood stabilization and the mitigation of aggression. Examples include valproic acid, carbamazepine, lamotrigine, and levetiracetam. While a full discussion of this class of medication is beyond the scope of this chapter, the aforemen-tioned AEDs have been evaluated in the ASD population with and without epilepsy in several case series or small open-label trials.

in the ASD population with and without epilepsy in several case series or small open-label trials. At present, AEDs seemed to have had equivocal results in terms of benefit with irritability, aggression, or behaviors associated with the core features of autism such as repetitive behaviors (Hirota et al. 2014; Tuchman et al. 2010), and concerns always are present for the medications to create affective blunting and/or to negatively impact cognitive and social capabilities. Formal evaluation via

blunting and/or to negatively impact cognitive and social capabilities. Formal evaluation via large randomized clinical trials in the ASD popu-lation with seizures is lacking and will be an important future step in guiding the care of this population (Tuchman et al. 2010). Epileptic encephalopathies associated with ASD, such as infantile spasms (IS) or Landau-Kleffner syndrome (LKS), are treated early and aggressively with AEDs, adrenocorticotropin hormone (ACTH), steroids, the ketogenic diet,

early and aggressively with AEDs, adrenocorticotropin hormone (ACTH), steroids, the ketogenic diet, or surgery. The main focus of these interventions is to improve seizure control. Outcomes of these practices as they relate to mitigation or prevention of ASD features are unknown (Crumrine 2002; Kosso et al. 2005; Trevathan 2002; Wheless 2004). The treatment of epileptiform activity on EEG, without the presence of clinical seizures, is an area of considerable debate. This debate is most

without the presence of clinical seizures, is an area of considerable debate. This debate is most rele-vant among those with ASD showing cognitive regression, but without a clear epilepsy syndrome or epileptic encephalopathy. Approximately 30% of children with ASD present autistic regression, which is understood as a loss of verbal and nonverbal communication skills between approx-imately 12 and 24 months of age. The relationship between regression and epileptiform activity noted in this

and 24 months of age. The relationship between regression and epileptiform activity noted in this subgroup has been postulated, but remains unclear, and treatment recommendations for this subgroup remain without a clear evidence base (Baird et al. 2006; Venkateswaran and Shevell 2008). New information about shared genetic and molecular causal pathways may provide new insights about the management of children with epilepsy and autism. For example, in fragile X syndrome, mouse models have

of children with epilepsy and autism. For example, in fragile X syndrome, mouse models have provided evidence that FMRP dysfunction may lead to behavioral and cognitive deficits as well as seizure formation (Brooks-Kayal 2010; Penagarikano et al. 2007). A key target in this dysregulation may be the metabotropic glutamate receptor (MgluR). Modulation of MgluR in mouse models has provided promising results in terms of behav-ior, cognition, and seizure formation (Brooks-Kayal 2010). Several

results in terms of behav-ior, cognition, and seizure formation (Brooks-Kayal 2010). Several molecules that modulate the function of this receptor are currently in vari-ous phases of development. Their role in epilepsy treatment and treatment of any ASD feature remains to be seen, but it is clear that much is to be learned from conditions where ASD and epilepsy coexist (Brooks-Kayal 2010).

### Conclusion  This encyclopedia entry provided an overview of the interesting association between autism and seizures disorders. This is an intriguing area for clinical inquiry, but it is also an area ripe for scientific investigation. With the prevalence of seizure disorders in the general population being approximately 2–3%, the rate of seizures in the population of individuals with autism is arguably as high as 22 times as much, with about one third experiencing at least one seizure by

is arguably as high as 22 times as much, with about one third experiencing at least one seizure by adolescence. With the recently documented prevalence of autism in the population, this combines to create a significantly large number of individuals with comorbid ASD and seizures. As a subgroup of individuals with ASD, however, this area has only begun to receive scientific scrutiny. Increased understanding of the type of seizures, identifiable neurological contributors, other asso-ciated

understanding of the type of seizures, identifiable neurological contributors, other asso-ciated conditions, and developmental course all should contribute to improved seizure manage-ment. Key to this understanding is early, compre-hensive evaluation and associated differential diagnosis. Also, recognizing that at least one-third will manifest a seizure by adolescence impli-cates the need for routine and thorough develop-mental surveillance for seizure manifestations by an interdisciplinary

routine and thorough develop-mental surveillance for seizure manifestations by an interdisciplinary group of trained profes-sionals (Eom et al. 2014). Ultimately, coordinated multimodal treatment approaches will be critical to maintaining a good quality of life for individ-uals with ASD and comorbid seizure disorders. Although treatment of epilepsy is a medical necessity, it typically will not be enough to address the additional symptoms related to ASD and related social and cognitive

not be enough to address the additional symptoms related to ASD and related social and cognitive functioning (Tuchman 2013).

### Autism and the Caribbean  ### Historical Background  The Caribbean comprises over 700 islands, islets, reefs, and cays between North and South Amer-ica. It is inhabited by approximately 42 million persons. Although many similarities exist between the islands and territories, there are huge variations in the following areas: population, gross domestic product, languages, educational status of the populous, and the healthcare systems. This report captures the status of autism in 12 of the

of the populous, and the healthcare systems. This report captures the status of autism in 12 of the English-speaking countries and terri-tories of the Caribbean (Anguilla, Antigua and Barbuda, the Bahamas, Barbados, Dominica, Grenada, Jamaica, Saint Kitts and Nevis, Saint Lucia, St. Vincent and the Grenadines, Tortola, and Trinidad and Tobago) with information on published research from the English- and Dutch-speaking Caribbean. There is a dearth of published data on the history of autism in

and Dutch-speaking Caribbean. There is a dearth of published data on the history of autism in the Anglophone Caribbean. Up until the late twentieth century, a minimum level of basic knowledge, lack of appropriate resources (health, educational, and social), stigma, and discrimination resulted in many individuals with developmental disabilities being hidden away at home or housed in mental institutions. Over the last two decades, there have been a number of drivers for addressing the needs of

Over the last two decades, there have been a number of drivers for addressing the needs of the disabled community, starting with the adoption of the Panama Commitment to Persons with Disabilities in the American Hemisphere by the Organization of American States (OAS) in 1996 and more recently the signature of the Convention of the Rights of Persons with Disabilities by all of the island states within the last decade (Collamarco et Delamonico 2013). On a regional level, the importance of

within the last decade (Collamarco et Delamonico 2013). On a regional level, the importance of addressing autism was first discussed by Heads of Government in the con-text of a larger discussion on special needs and disability during the 34th regular meeting of the Caribbean Community (CARICOM) Heads of Government in the Port of Spain in July 6, 2013. The call to address special needs and disabilities with a higher-level meeting was raised by Haiti and led by the Prime Minister of the Bahamas

with a higher-level meeting was raised by Haiti and led by the Prime Minister of the Bahamas the Honorable Perry Christie and Prime Minister of Trinidad and Tobago the Honorable Kamla Persad-Bissessar who reported that their child and grandchild, respec-tively, are autistic.

### Services  No center in the English-speaking Caribbean offers services exclusively for autism. Over the last 40 years with increasing awareness of the need to identify and address early developmental challenges in children, the power of early inter-vention, and the rights of all children, the number of child development centers throughout the region has grown (see Table 1). These centers cater to children with all forms of disability, including autism. The most recent additions have been

to children with all forms of disability, including autism. The most recent additions have been the Marjorie Davis Institute which opened in the Bahamas on April 21, 2015, and the Autism Centre in the British Virgin Islands on October 29, 2012. The Autism Centre in Tortola initially exclusively provided services for children and adults on the autism spectrum; however, its function has evolved to include the provision of services for other disabilities. This evolution cap-tures a trend that

to include the provision of services for other disabilities. This evolution cap-tures a trend that resonates throughout the region.

| Country/territory | Centers providing autism services | Services provided | Free services |
|---|---|---|---| | Bahamas | The Marjorie Davis Institute | Evaluation and treatment | Yes | | | Caribbean Center for Child Development | Evaluation and treatment | No | | Barbados | Albert Cecil Graham Development Centre | Evaluation and treatment | Yes |

| | Sunshine Early Stimulation Centre | Treatment | No | | | The School for Special Needs | Treatment | No | | | The Irvine Wilson School | Treatment | Yes | | British Virgin Islands | The Autism Centre | Evaluation and treatment | Yes | | Dominica | The Alpha Center | Treatment | No | | | The Achievement Centre | Treatment | No | | Jamaica | The Pediatric-Adolescent Clinic University Hospital, Kingston | Evaluation | No |

| | The Early Stimulation Centre and the Early Stimulation School | Evaluation and treatment | Yes |
| | The Montego Bay Autism Center | Treatment | No | | | The McCann Child Development Centre | Treatment | No | | | The Promise Learning & Training Centre | Treatment | No | | St. Lucia | Child Development Guidance Clinic | Evaluation and treatment | Yes |
| Trinidad and Tobago | Child Development Clinic, Eric William Complex, Mount Hope | Evaluation | Yes |

| | The Child Guidance Clinic | Evaluation | Yes | | | The Mental Health Clinic, San Fernando | Evaluation | Yes | | | The Mental Health Clinic, Tobago | Evaluation | Yes | | | The Autism Society of Trinidad and Tobago | Treatment | Yes |  Some of the child development centers are pub-licly funded; however, the majority are formed by non-governmental organization and receive sig-nificant subventions from the government and donations from philanthropic associations. Their budgets are extremely

from the government and donations from philanthropic associations. Their budgets are extremely vulnerable to the fiscal adjustments that frequently occur in small devel-oping economies. This situation also pertains to most of the private special education schools; some of which have closed as a result of inade-quate funding. There are extensive wait periods to access ser-vices in the public centers and clinics (up to 3 years in some countries). The extensive wait adds to the delay in diagnosis

and clinics (up to 3 years in some countries). The extensive wait adds to the delay in diagnosis and commencement of interventions and adversely impacts outcomes. A significant minority of children access services in the private sector where the availability of trained professionals is often greater than the pub-lic sector. An effort to expand and decentralize services has been made in Barbados with the addition of speech and language therapy in some of the public clinics. Additionally the

with the addition of speech and language therapy in some of the public clinics. Additionally the evaluation and treatment services are slowly increasing with greater awareness of autism and the benefits of early intervention. The identification of autism sometimes occurs as a result of concerns raised during routine devel-opmental assessments by pediatricians. However for many of the children who receive services in the public sector, concern about the child’s socio-communicative development first

services in the public sector, concern about the child’s socio-communicative development first occurs in the preschool and elementary school environments. It is also in the school environment that most children receive intervention. For a vast number of children and adolescents who are identified, the main intervention is place-ment in a special education class with children who have other developmental disabilities. One-on-one instruction, routine application of applied behavioral analysis,

disabilities. One-on-one instruction, routine application of applied behavioral analysis, Treatment and Edu-cation of Autistic and Related Communication Handicapped Children (TEACCH), and other evidence-based interventions are more common in private schools but seldom present for the majority of children who receive services in the public sector. Where evidence-based interven-tions for teaching children with autism are avail-able, very few children receive the recommended 20–40 h per week.

children with autism are avail-able, very few children receive the recommended 20–40 h per week. Speech and language therapy and occupational therapy are seldom integrated into the education system; these therapies are more likely to be integrated in the education plan of children with autism who attend private schools. The availability of specialists and fre-quency of receipt of these services vary across the countries and territories with St. Vincent and the Grenadines (population, 109, 000)

across the countries and territories with St. Vincent and the Grenadines (population, 109, 000) reporting no speech and language therapist on the island. Parents will often access psychoeducational test-ing, speech and language, occupational therapy, and behavior therapy privately; the cost of these services presents an additional financial burden in already difficult circumstances. Some countries maintain a database of persons with disabilities, and in Jamaica the University of the West Indies

maintain a database of persons with disabilities, and in Jamaica the University of the West Indies maintains an autism database; however no other national registry of persons with autism was identified during the preparation of this chapter. Additionally outside of Jamaica and Aruba, no documented monitoring of the situation of persons with autism or studies in the area of autism were identified. The University of the West Indies, Department of Child and Adolescent Health, Mona campus (Jamaica)

The University of the West Indies, Department of Child and Adolescent Health, Mona campus (Jamaica) has been the major center for research in autism in the region with extensive publication by Professor Maureen Samms-Vaughan, Dr. Mohammed Rahbar, and colleagues on possible etiological factors, associations, parental experi-ence, and barriers to diagnoses and implementa-tion of interventions for autism. Dr. Ingrid Van Balkom from the Child and Adolescent Psychia-try Clinic at Oranjestad (Aruba)

Dr. Ingrid Van Balkom from the Child and Adolescent Psychia-try Clinic at Oranjestad (Aruba) has also been a major author of published research on autism in our region. They have contributed a wealth of information on potential causation, risk factors, and barriers to diagnoses and implementation of interventions in the Caribbean region.

### Legal Issues, Mandates for Service  All of the ten independent countries described in this report and the United Kingdom (of which Anguilla and Tortola are overseas territories) rat-ified the Convention on the Rights of the Child in the 1990s. Six of the countries (Barbados, Domi-nica, Grenada, Jamaica, St. Vincent and the Gren-adines, and Trinidad and Tobago) ratified the Convention on the Rights of Persons with Dis-abilities (CRPD) or joined by accession within the last 10 years with five

of Persons with Dis-abilities (CRPD) or joined by accession within the last 10 years with five of the six joining in the last 3 years. The United Kingdom (of which Anguilla and Tortola are dependencies) ratified the CRPD in 1991. The Bahamas and Jamaica have enacted dis-ability legislation, and with their ratification of the CRPD, many of the other countries are in the process of developing disability legislation. The absence of disability-specific legislation and man-dates has decreased the

legislation. The absence of disability-specific legislation and man-dates has decreased the ability of the disabled community to advocate for its needs. The absence of legislation is also reflected in the lack of a structured approach to the provision of services and entitlements for the disabled community. Going forward it is absolutely essential that the organized leadership lobby their respective policy makers to achieve their support for allocating the drafting of specific disability

respective policy makers to achieve their support for allocating the drafting of specific disability legislation as a high priority in the face of a multitude of competing demands. Enforcement of the legislation in those countries which have enacted relevant laws encounters problems including but not limited to the availability of funding and skilled profes-sionals. In spite of the above-stated challenges, the Dutch overseas territory Aruba has been mak-ing strides with the meeting of high-level

the Dutch overseas territory Aruba has been mak-ing strides with the meeting of high-level national officials with representatives of Autism Speaks on September 22, 2014, to assist with the develop-ment of an autism strategy on island. Most countries have stated in their education act the need to provide education for children with special needs in an appropriate environment; however there is no autism-specific legislation or mandates for provision of services or entitlements specifically for

no autism-specific legislation or mandates for provision of services or entitlements specifically for autism. In the region, the receipt of disability assis-tance is not automatic; the vast majority of per-sons with disabilities are required to apply for disability assistance. Furthermore in some coun-tries, the financial assistance can be discontinued if the individual is able to earn any income.

### Overview of Current Treatments and Centers  Please see below the table of some of the centers that offer evaluation and/or treatment for autism.

### Overview of Research Directions  Most of the research published on autism in the region has focused on causation; to this end the University of the West Indies, Mona campus, has led the way with published research in peer-reviewed journals. Their research has examined the possible role of heavy metals (manganese, cadmium, arsenic, and mercury), the role of glu-tathione S-transferase (GST) genes, parental age, factors inhibiting early identification, and intervention. Dr. Ingrid Van Balkom

parental age, factors inhibiting early identification, and intervention. Dr. Ingrid Van Balkom from the Child and Adolescent Psychiatry Clinic at Oranjestad (Aruba) has also examined and confirmed pater-nal age as a risk factor and has studied the preva-lence rates of autism spectrum disorder in Aruba which has been determined to be 5.3 per 1,000 for the period 1990–1999.

### Overview of Training  Awareness training has been the most common type of training that occurs in the Anglophone Caribbean. Public education on autism is often incorporated into Autism month activities. Edu-cational activities on the identification of children with autism targeting healthcare professionals and educators are usually linked to Autism month and Autism Awareness Day. A program of systematic training and continuous education for teachers who work in special education exist in

of systematic training and continuous education for teachers who work in special education exist in the Baha-mas and Tortola; however no systematic continu-ous education on autism exist for general teachers and healthcare providers in any of the Anglo-phone countries and territories of the region.

### Social Policy and Current Controversies  In general, with increasing visibility and inclusion of persons with disabilities (e.g., in Barbados the leader of the Senate the Honorable Kerry-Ann Ifill is visually impaired, and a major supermarket chain in the region has integrated employees with disabilities in visible positions), attitudes toward persons with developmental disabilities are improving with slow but steady movement to inclusivity. Autism awareness continues to grow in the region

with slow but steady movement to inclusivity. Autism awareness continues to grow in the region as a result of continuous advocacy efforts spearheaded by the autism associations, other ser-vice organizations, and prominent families affected in the Caribbean region. Additionally, access to the Internet has allowed parents to become acutely aware of the importance of early diagnosis and interventions. In part, this increased knowledge adds to the frustration around accessing intensive,

In part, this increased knowledge adds to the frustration around accessing intensive, evidence-based intervention in their countries. Parents are often concerned about the quality of the educational services and are fearful that the emphasis of some special needs schools is skewed toward daycare as oppose to learning. National autism associations exist in 5 of the 12 countries and territories: Bahamas, Barbados, Jamaica, Trinidad and Tobago, and Tortola. The associations are mainly funded by

Bahamas, Barbados, Jamaica, Trinidad and Tobago, and Tortola. The associations are mainly funded by private sector and philanthropic support with some organiza-tions receiving small subventions from the respec-tive governments. These organizations vary in the scope and continuity of services they offer; at minimum, they offer educational information on autism spectrum disorders and support for affected individuals and their families. The Autism Society of Trinidad and Tobago is one of the more

individuals and their families. The Autism Society of Trinidad and Tobago is one of the more active autism associations in the region with a register of 650 persons with autism. It trains parents as cotherapists and offers social skills play groups for the children. Additionally they provide recreational activities and life skills training for the adults, music and art therapy on Saturdays, and camps for adults and children dur-ing the long holidays. Possibly the area of greatest concern beyond

for adults and children dur-ing the long holidays. Possibly the area of greatest concern beyond early identification is the plight of young adults with autism. Crisis often occurs when they sur-pass the age when schooling is mandated by law, and they have not attained skills for independent living or employment. Many parents (often single mothers who are the sole breadwinners of the household) grapple with the choice of leaving their dependent adult son or daughter at home unsupervised or

grapple with the choice of leaving their dependent adult son or daughter at home unsupervised or staying away from work at the risk of compromising employment. In 2015, the deficit of services for dependent children and adults with disabilities was in part addressed in Barbados and Dominica; in Barba-dos, through the philanthropic work of Derrick Smith, the state-of-the-art vocational center at the Derrick Smith Secondary School and Voca-tional Centre was opened. The vocational center caters to

Derrick Smith Secondary School and Voca-tional Centre was opened. The vocational center caters to adults with developmental disabilities. Additionally on the island of Dominica, advocacy by the Parents Advocating for Children with Dis-abilities Inclusion in Society (PACIS) and an assessment of the number of children affected by disability on the island culminated in the develop-ment of the PACIS Care Center scheduled to be opened in September 2015. The center will pro-vide respite for parents

Care Center scheduled to be opened in September 2015. The center will pro-vide respite for parents who have to make the difficult decision of earning an income outside of the home or caring for the physical needs of their children with disabilities.

### Autism Behavior Checklist  ### Description  The Autism Behavior Checklist (ABC) is one com-ponent of the Autism Screening Instrument for Educational Planning (ASIEP) and is the only one that has been evaluated psychometrically. The ABC is a 57-item behavior rating scale assessing the behaviors and symptoms of autism for children 3 and older. The instrument consists of a list of 57 questions divided into five categories: (1) sen-sory, (2) relating, (3) body and object use, (4) lan-guage, and

into five categories: (1) sen-sory, (2) relating, (3) body and object use, (4) lan-guage, and (5) social and self-help. Each item has a weighted score ranging from 1 to 4. The ABC is designed to be completed independently by a par-ent or a teacher familiar with the child for at least 3–6 weeks. It should take from 10 to 20 min to complete. The protocol is then returned to a trained professional for scoring and interpretation.

### Historical Background  The Autism Behavior Checklist (ABC) was published in 1980 and is part of a broader tool, the Autism Screening Instrument for Educational Planning (ASIEP). The content of the ABC was based on other autism screening instruments available at the time of its development.

### Psychometric Data  The ABC’s item score weights and cutoff scores were developed using over 1000 completed ques-tionnaires from children and adults with autism, intellectual disabilities, visual and hearing impair-ments, and emotional disturbance, as well as those with typical developmental profiles. Higher sub-test or total scores reflect greater impairments and more severe levels of autism symptomology. Although widely used for years, several con-cerns about its psychometric properties

symptomology. Although widely used for years, several con-cerns about its psychometric properties have been identified. For example, studies have found inter-rater reliability to be much lower than those reported in the initial study during development. In addition, the ABC subscales were not empiri-cally derived and were established by grouping items based on face validity. Later studies have also shown significant differences between parent and teacher reports, although it is not clear whether

shown significant differences between parent and teacher reports, although it is not clear whether the discrepancies indicate weaknesses specific to the ABC or reflect differences encountered commonly when using multiple informants. Per-haps more important are questions concerning the sensitivity and specificity of the ABC. Several studies have suggested the cutoff score of 67 leads to a high number of false negatives. Stud-ies lowering of the cutoff scores to 58 and 45 respectively have shown

of false negatives. Stud-ies lowering of the cutoff scores to 58 and 45 respectively have shown increased sensitivity and decreased specificity. The ABC has been shown to correlate significantly with the Gilliam Autism Rating Scale (GARS), but correlations with the Childhood Autism Rating Scale (CARS) have been variable.

### Clinical Uses  The ABC is primarily designed to identify chil-dren with autism within a population of school-age children with severe disabilities. When used in conjunction with other diagnostic instruments and methods, the ABC can be useful as a symp-tom inventory to be used by clinicians in structur-ing their evaluation.

### Autism Behavior Inventory (ABI)  ### Description  The ABI is a parent- or caregiver-reported outcome measure that was developed to assess change in core and associated symptoms of ASD. The scale consists of 62 items covering 5 domains of behav-ior. The two core ASD domains are Social Com-munication (comprised of Reciprocity and Verbal and Nonverbal communication subdomains) and Restrictive Behavior (comprised of Resistance to Change, Restricted Interests, Stereotypical Behav-ior,

Behavior (comprised of Resistance to Change, Restricted Interests, Stereotypical Behav-ior, Hypersensitivity subdomains). In addition, three associated domains of Mood and Anxiety, Self-Regulation, and Challenging Behavior repre-sent behaviors that are not part of the ASD diagno-sis but commonly occur in individuals with ASD and inform clinical consideration. Caregivers endorse items on a 4-point scale relating either to Quality (how well behaviors are carried out) or Frequency (how often a

scale relating either to Quality (how well behaviors are carried out) or Frequency (how often a behavior occurs), over the past 7 days. A shorter version of the ABI (ABI-S), that includes 24 items across all 5 domains, may be used to assess behavior more frequently (e.g., every 2 weeks). The ABI was developed as an online rating scale, but a paper version is also available. A single form is suitable for caregivers of individ-uals with ASD aged 3 years through adulthood and may be used with both

for caregivers of individ-uals with ASD aged 3 years through adulthood and may be used with both verbal and minimally verbal groups. Scores are obtained by the averag-ing of all completed responses for each domain. A core score corresponds to the average of all responses across the Social Communication and Restrictive Behavior domains.

### Historical Background  There are limited reliable, valid, and objective end-points for measuring clinically and statistically sig-nificant changes in the core and associated symptoms of ASD, and this lack hinders the inter-pretation of treatment outcomes (McConachie et al. 2015). There is a need for measures that have shorter recall periods and reduced burden for respondents, with ample evidence demonstrating that the constructs measured are both relevant and well understood by parents

demonstrating that the constructs measured are both relevant and well understood by parents (Aman et al. 2015). The ABI was developed in response to this need, in consultation with regulatory authorities, and in alignment with the FDA (2009) guidelines for patient- and caregiver-reported outcome measures. The iterative scale development of the ABI included two pilot studies (Bangerter et al. 2017), a validation study (Bangerter et al. 2019), and a cognitive interview study (Pandina et al.

2017), a validation study (Bangerter et al. 2019), and a cognitive interview study (Pandina et al. 2018). Through the entirety of scale development, an ini-tial list of 300 items was refined and reduced through review and testing with multiple stake-holders and based on statistical performance and clinical importance. Caregiver feedback led to the inclusion of additional items on sleep and food sensitivity. Delphi review (Dalkey 1969) by an expert panel of ASD researchers and clinicians led to

Delphi review (Dalkey 1969) by an expert panel of ASD researchers and clinicians led to the selection of items for the ABI-S that were representative across the core and associated domains and were considered to have the most potential for short-term change. Finally, cognitive interviews with caregivers of individuals with ASD, who were representative of a broad range of age and linguistic ability, confirmed that the instructions and items were well understood and that the response options and

confirmed that the instructions and items were well understood and that the response options and response period of 1 week were appropriate. Caregivers reported that scale was easy to use and comprehensive in the range of items covered. As a result of this final cognitive debriefing study, a small number of items were removed or reworded resulting in the current 62-item version of the ABI (v1.1) and a 24-item ABI-S (v1.1).

### Psychometric Data  Clinical experts assigned ABI items to groups forming domains and subdomains; these were further confirmed with factor analysis in a sample (n ¼ 353) of online survey responses (Bangerter et al. 2017). The items were subjected to confir-matory factor analysis (CFA) with principal axis factoring. The Kaiser-Meyer-Olkin measure of the sampling adequacy ratio of total items was 0.932, indicating appropriateness of factor struc-ture. The five factors accounted for 63.74% of the

0.932, indicating appropriateness of factor struc-ture. The five factors accounted for 63.74% of the variance in item scores. Items loaded onto respec-tive domains and any cross-loading items were reviewed as part of the item-reduction process. In addition, inter-item correlation, item discrimi-nation, and item information functioning were taken into account to produce a 73-item version of the ABI. This version was further reduced to 62 items comprising the ABI v1.1. Research in a group of

ABI. This version was further reduced to 62 items comprising the ABI v1.1. Research in a group of individuals with a clin-ically confirmed diagnosis of ASD (n ¼ 144) demonstrated sound psychometric properties of the ABI v1.1 (Bangerter et al. 2019). Internal consistency across domains was high (Cronbach’s alpha 0.84–0.89). Test-retest reliabil-ity 3–5 days after baseline was excellent (ICC values ranging from 0.84 to 0.93). Convergent and discriminant validity were assessed by com-paring ABI

ranging from 0.84 to 0.93). Convergent and discriminant validity were assessed by com-paring ABI domain scores with pre-specified sub-scales of comparison instruments. For convergent validity, strong positive Pearson correlations were found in core ASD domains, for example, ABI Social Communication with Social Responsive-ness Scale (SRS), Social Communication and Interaction (0.69), and ABI Restrictive Behavior with Repetitive Behavior Scale-Revised (RBS-R) (0.75). Similarly, for associated

Behavior with Repetitive Behavior Scale-Revised (RBS-R) (0.75). Similarly, for associated domains, ABI Mood and Anxiety correlated with Child and Adolescent Symptom Inventory (CASI) anxiety scale (0.77), ABI Self-Regulation correlated with Aberrant Behavior Checklist (ABC) Hyperactiv-ity and Non-Compliance (0.88), and ABI Chal-lenging Behavior with ABC Irritability (0.76). Short form items were selected based on their statistical performance and clinical expert feed-back. Psychometric

were selected based on their statistical performance and clinical expert feed-back. Psychometric properties for the ABI-S v1.1 were similar to those reported for the ABI v1.1; for example, internal consistency for the ABI-S domains was 0.69–0.79, and test-retest reliability was good (0.77–0.88). The ABI has been developed as a measure of change in symptoms or behavior over time and is currently being implemented within an interven-tional clinical trial (NCT03664232), the data from which will

being implemented within an interven-tional clinical trial (NCT03664232), the data from which will allow understanding of the sensitivity to change of the ABI. In an 8–10-week treatment as usual, observational trial (Ness et al. 2019; Bangerter et al. 2019), participants showing improvements in ASD severity based on category change in SRS-2 Total Scores showed analogous ABI domain score improvements in Core ASD Symptoms, Social Communication, and Restric-tive Repetitive Behaviors (moderate to

in Core ASD Symptoms, Social Communication, and Restric-tive Repetitive Behaviors (moderate to large within-group effect sizes of 0.63, 0.50, and 0.41, respectively); these effects were not observed in groups with no documented change or who were reported to have worsened. Further validation, including sensitivity to change and a confirmatory factor analysis of the ABI v 1.1, is planned as data from ongoing research studies become available. Studies will take place in individuals with broader

from ongoing research studies become available. Studies will take place in individuals with broader range of ages and levels of functioning. Translations of the ABI into various languages are also in preparation, alongside associated cross-cultural validation.

### Clinical Uses  The ABI and the ABI-S are designed to measure change in response to intervention and allow for the potential to complete one instrument in place of discrete alternatives commonly used in treatment outcome studies and clinical drug trials. Both instruments are freely available in paper form for use in clinical or research settings, subject to terms and conditions, and can be obtained via email at autismbehaviorinventory@its.jnj.com. Caregivers, including healthcare

can be obtained via email at autismbehaviorinventory@its.jnj.com. Caregivers, including healthcare professionals who spend more than 3–4 h a week with the person who has ASD, can complete the scale. The scale can be repeated at weekly or longer intervals by the same respondent, in order to determine response to an intervention based on change from baseline administration. The ABI takes approximately 10–20 min to complete and the ABI-S around 5–10 min. A clinician version of the ABI (ABI-C) is

10–20 min to complete and the ABI-S around 5–10 min. A clinician version of the ABI (ABI-C) is cur-rently being tested. This version allows clinicians and other healthcare professionals to assess the same domains and subdomains of the ABI, using 14 items with a 0–7-point scale of symptom severity.

### Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (Also Referred to as the “Autism CARES Act of 2019”)

### Definition  The “Autism Collaboration, Accountability, Research, Education, and Support Act of 2019,” abbreviated as the “Autism CARES Act of 2019” (hereafter “the Act”), is a milestone law in the United States that provides federal funding to the US Department of Health and Human Services (DHHS) for services and research concerning individuals with autism spectrum disorder (ASD) (Pub. L. No. 116–60, 2019). The Act supports ASD-related programs in three DHHS agencies: National Institutes

116–60, 2019). The Act supports ASD-related programs in three DHHS agencies: National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Admin-istration (HRSA) (DHHS 2017). The programs covered under the Act include biomedical ASD research and the continued development of best practices to enhance the lives of persons with ASD. Importantly, the Act also formally expands the focus of US government programs to include research and

the Act also formally expands the focus of US government programs to include research and services that assist individuals with ASD across their life spans, not only children and young adults (Turcotte et al. 2016).

### Legislative Details  Under the Act, the US Congress assigns govern-ment funds for a wide range of ASD-related pro-grams with an emphasis on seven key activities: research, surveillance, early detection, preven-tion, treatment, education, and disability support. The Act has three general goals: [1] The law expands efforts to conduct research, surveillance, education, detection, and intervention for all individuals with autism spectrum disorder across their lifespan, regardless of age. . .

for all individuals with autism spectrum disorder across their lifespan, regardless of age. . . [2] [It] also aims to reduce disparities among indi-viduals from diverse racial, ethnic, geographic, or linguistic backgrounds, and [3] directs additional care to rural and underserved areas. (U.S. House of Representatives 2019) The Act defines “underserved areas” as geo-graphic locations where there are shortages of healthcare professionals available to provide ser-vices to the public. In addition,

shortages of healthcare professionals available to provide ser-vices to the public. In addition, the Act re-establishes the Interagency Autism Coordinat-ing Committee (IACC) federal advisory commit-tee, which is responsible for coordinating and guiding government efforts on issues related to ASD in public forums (IACC 2001–2020). The IACC is made up of federal government workers, industry experts, academic researchers, and mem-bers of the public. The Act’s 5-year reauthorization of funds

academic researchers, and mem-bers of the public. The Act’s 5-year reauthorization of funds includes annual authorizations of $23.1 million for developmental disability surveillance and research; $50.599 million for ASD education, early detection, and intervention; and $296 million to carry out the work of the IACC and other DHHS programs. The Act’s funding covers activities through September 30, 2024. Congress will need to provide additional government funding before October 1, 2024, so that

2024. Congress will need to provide additional government funding before October 1, 2024, so that the DHHS can continue the services and research facilitated under the Act. The Autism CARES Act of 2019 is designed to help society obtain new insights regarding effec-tive ASD services, interventions, and treatments (U.S. House of Representatives Congressman Chris Smith 2019). The Act contains eight pri-mary components: 1. Authorizes $1.8 billion in funds, including $296 million in annual funding

pri-mary components: 1. Authorizes $1.8 billion in funds, including $296 million in annual funding to the NIH (2020), $23.1 million to the CDC (2019), and $50 million to HRSA (2019) 2. Reauthorizes and expands the IACC 3. Reauthorizes government program activities including: (a) Expanding ASD research at the NIH (2015) (b) Continuing the CDC’s collection of state-level ASD data (CDC 2020) (c) Continuing the ASD education, early detection, and intervention activities supported by the HRSA and

the ASD education, early detection, and intervention activities supported by the HRSA and the IACC (HRSA 2020) 4. Revises the scope of government programs and activities in three key areas: (a) Encompassing ASD individuals of all ages, rather than only children (b) Increasing funding on programs in areas with a shortage of personal health services (c) Reducing health-outcome disparities across diverse populations. 5. Adds new members of IACC from the Depart-ments of Labor, Justice, Veterans

diverse populations. 5. Adds new members of IACC from the Depart-ments of Labor, Justice, Veterans Affairs, and Housing and Urban Development. 6. Increases from two to three IACC members who are self-advocates, parents or legal guard-ians and advocacy/service organizations. 7. Empowers the DHHS Secretary to prioritize grants to rural and underserved areas across the United States 8. Requires DHHS agencies to compile a com-prehensive report to Congress that details cur-rent and future outlooks

agencies to compile a com-prehensive report to Congress that details cur-rent and future outlooks government services and research initiatives concerning ASD. This report must be completed by no later than September 30, 2021, which is 2 years after the law was first enacted. The Act specifies that the report must contain the following information: (a) Demographic factors associated with the health and well-being of individuals with ASD (b) Recommendations on establishing best practices to ensure

and well-being of individuals with ASD (b) Recommendations on establishing best practices to ensure interdisciplinary coordination (c) Improvements for health outcomes (d) Community-based behavioral support and interventions (e) Nutrition, recreational, and social activities (f) Personal safety

### Legislative History and Background  Congress typically approves funds for DHHS’ ASD-related programs in 5-year appointments. For the past two decades, Congress has continu-ously recognized the need for the IACC and for increased US government research and support programs regarding ASD. See Table 1. In 2000, Congress first established the IACC under the Chil-dren’s Health Act of 2000 – this law intensified US government research, prevention, and treatment activities for a number of

– this law intensified US government research, prevention, and treatment activities for a number of conditions that signifi-cantly impact children, including ASD (Pub. L. No. 106–310, 2000). In 2006, Congress passed the Combating Autism Act of 2006, which focused on specific DHHS services for populations with ASD and elevated the status of the IACC as an official federal advisory committee that communi-cates directly with the Office of the Secretary of DHHS (Pub. L. No. 109–416, 2006).

| Year | Law title | Public law number | |---|---|---| | 2000 | Children’s Health Act | Public Law 106–310 | | 2006 | Combating Autism Act | Public Law 109–416 | | 2011 | Combating Autism Reauthorization Act | Public Law 112–32 | | 2014 | Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act | Public Law 113–157 |
| 2019 | Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act | Public Law 116–60 |

From 2006 to the present, Congress has reauthorized funding for the IACC and steadily expanded funding for ASD-related programs within DHHS. Each act focuses on supporting federal ASD research and services for surveillance, early detection, prevention, treatment, education, and dis-ability programs within DHHS. In 2011, 2014, and 2019, Congress passed the following respective laws: Combating Autism Reauthorization Act of 2011 (Pub. L. No. 112–32, 2011); Autism Collab-oration, Accountability,

Reauthorization Act of 2011 (Pub. L. No. 112–32, 2011); Autism Collab-oration, Accountability, Research, Education, and Support (CARES) Act of 2014 (Pub. L. No. 112–32, 2014); and the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (Pub. L. No. 116–60, 2019). On February 7, 2019, the Act was first intro-duced as a bill within the House of Representa-tives (House Bill 1058). The House passed the Act on July 24, 2019. The Senate approved it shortly

(House Bill 1058). The House passed the Act on July 24, 2019. The Senate approved it shortly thereafter on September 19, 2019. On September 30, 2019, the Act was signed into law by the president. More than 35 nonprofit organizations endorsed the Act, including the Autism Society of America, Autism Speaks, Autism New Jersey, the Association of Univer-sity Centers on Disabilities, the Children’s Hos-pital Association, the National Council on Severe Autism, the Congress, and the National Down

Hos-pital Association, the National Council on Severe Autism, the Congress, and the National Down Syndrome Society.

of obsessions, experimental conditions may be difficult to design and repeatedly implement. However, future research may examine brief functional analyses and the use of physiological measures such as heart rate monitoring (Chok and Koesler 2014). Although studies report promising results, additional randomized controlled trials are sorely needed to firmly establish the efficacy of adapted CBTalone as well as the additive value of combining CBT with ABA-based procedures including functional

as well as the additive value of combining CBT with ABA-based procedures including functional behavior assessment for children and youth. Addressing all maintaining variables in a treatment package derived from function-based assessment may quicken treatment response for OCBs. Typically, CBT studies included high-functioning individuals, whereas ABA studies included children and youth with ASD and an ID. Future research is needed with children and youth who present with a wide range of

ASD and an ID. Future research is needed with children and youth who present with a wide range of cognitive and adaptive levels to evaluate ideal treatment modalities, including psychosocial and pharmacological treatment. Research is needed to tease out key treatment components that are evidence-based for varying populations. Studies involving component analyses may aid in determining active ingredients for a range of ASD presentations, including children with ASD alone as well as those

ingredients for a range of ASD presentations, including children with ASD alone as well as those presenting with comorbid conditions such as attention deficit hyperactivity disorder (ADHD), comorbid anxiety, and varying neurodevelopmental disorders (DSM-5, APA 2013; Postorino et al. 2017). Also, examination of sociocultural variables (e.g., socioeconomic status, cultural values) is crucial in designing treatment protocols that are person- and family-centered to meet the needs of youth and their

treatment protocols that are person- and family-centered to meet the needs of youth and their families. Evaluation of CBT and combined treatments is also needed across varying age ranges. For example, only a handful of case studies and one RCT (Russell et al. 2013) have evaluated CBT to treat OCBs in older adolescent and adult populations with ASD. In this study, 46 adolescents and adults with a mean age of 27 years were randomized to CBT versus an anxiety management condition, with both groups

age of 27 years were randomized to CBT versus an anxiety management condition, with both groups showing significant reductions in OCBs. Extension is also needed to younger populations, with an emphasis on early intervention for children of preschool age presenting with ASD and other related disabilities (Guertin et al. 2019). To date, published research shows promise, but as suggested above, additional research evaluating singular and dual treatment modalities including Fb-CBT, with

above, additional research evaluating singular and dual treatment modalities including Fb-CBT, with consideration of variables including level of cognitive functioning, comorbid presentations, cultural factors, and various age ranges, is needed. A focus of future studies should be on the establishment of a strong evidence base for treating obsessive-compulsive behavior with manualized packages such as Fb-CBT that are tailored to the needs of individuals across the ASD spectrum.

See Also ▶Anxiety ▶Autism Spectrum Addendum to the Anxiety Disorders Interview Schedule-Parent Interview

▶Applied Behavior Analysis (ABA) ▶Cognitive Behavioral Therapy (CBT) ▶DSM-5 and Autism Spectrum Disorder ▶Functional Analysis ▶Functional Behavior Assessment ▶Habit Reversal ▶Hoarding in Youth with Autism Spectrum Disorders ▶Mental Health and ASD ▶Obsessive-Compulsive Disorder (OCD) ▶Repetitive Behavior ▶Restricted Interest  American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.

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Rispoli, M., Camargo, S., Machalicek, W., Lang, R., & Sigafoos, Autism Cymru **Major Areas or Mission Statement** Autism Cymru is Wales’s pioneering national charity for Wales. It is a practitioner-led charity set up in 2001 to improve the lives of people in Wales with an autistic spectrum disorder and their families. It has a dedicated national brief in Wales and in the projection of Welsh practice within and outside Wales. Autism Cymru takes the view that everyone with an autistic spectrum

within and outside Wales. Autism Cymru takes the view that everyone with an autistic spectrum disorder in Wales should receive a service appropriate to their assessed needs, whatever their age and wherever they live. In order to achieve this, Autism Cymru actively promotes at both national and local levels the practice of strategic, collaborative, and multidisciplinary partnerships and highly focused coordination of services to people with autistic spectrum disorders and their families.

Autism Cymru’s primary task was successfully to influence the Welsh Assembly Government to establish the world’s first government-led strategy for autism, which was launched at Autism Cymru’s third International Autism Conference in Cardiff in April 2008. Autism Cymru’s Chief Executive, Hugh Morgan OBE, heads up the implementation of the Assembly Government’s Action Plan for Autism.

**Landmark Contributions** Wales is the only country in the world with a national strategy for autism.  **Major Activities** Autism Cymru runs the pioneering bilingual websites, Awares (www.awares.org). Every November, Autism Cymru’s editor, Adam Feinstein, runs the Awares international online autism conference (www.awares.org/conferences), the largest event of its kind in the world, with more than 60 world autism experts taking part, along with thousands of delegates. Professor Simon

more than 60 world autism experts taking part, along with thousands of delegates. Professor Simon Baron-Cohen has called this event “the finest online conference on the planet.” Autism Cymru together with Autism Northern Ireland, Scottish Society for Autism, and the Irish Society for Autism has launched the Celtic Nations Autism Partnership. This will lead to shared opportunities for joint working in Northern Ireland, Scotland, and Republic of Ireland, in addition to Autism Cymru’s existing work

in Northern Ireland, Scotland, and Republic of Ireland, in addition to Autism Cymru’s existing work in Wales.

Autism Cymru carries out research in partnerships with universities in Wales. In 2010, Professor Sue Leekam became the first chair of autism at Cardiff University and head of the new Welsh Autism Research Centre, based at the university’s school of psychology and supported by Autism Cymru. Autism Cymru works in partnership with Mudiad Ysgolian Meithrin with funding from Children in Need to train Welsh medium playgroup leaders across Wales. Autism Cymru works in partnership with Autism Northern

Welsh medium playgroup leaders across Wales. Autism Cymru works in partnership with Autism Northern Ireland (PAPA) on UK and European campaigns to improve the lives of those with autism and to project best practice in each country. Autism Cymru works with local authorities and local health boards to develop local strategies for autism. Autism Cymru works with local education authorities in Wales to deliver its Inclusive Schools and ASDs: Whole School Training and Research Project. Autism Cymru

to deliver its Inclusive Schools and ASDs: Whole School Training and Research Project. Autism Cymru works in partnership with the North Wales Police and Dyfed Powys Police to operate the Emergency Services ASD Attention Card Scheme which raises awareness of autism among members of the emer-gency services in Wales.

Autism Cymru has worked with Bro Morgannwg NHS Trust on a research project connected to the criminal justice system. Autism Cymru operates the AWARES EDUNET website and School Fora for education professionals. Autism Cymru publishes books and bilingual infor-mation booklets for professionals, parents, and peo-ple with autism. Publications include All About Autistic Spectrum Disorders and My Brother Gwern, a book for siblings of children with autism which won an award at Welsh Language in

Brother Gwern, a book for siblings of children with autism which won an award at Welsh Language in Healthcare Awards 2006. Autism Cymru’s work also takes place on an international stage and with European partners, including Autism-Europe. For example, its 2009–2012 European-funded Deis Cyfle project (Opportunities for people with autism in education and employment) reached out to over 5,700 people across Wales and Ireland. The charity is also the sole national autism charity governed by those

across Wales and Ireland. The charity is also the sole national autism charity governed by those living in Wales. Autism Cymru’s Chair is Professor Bill Fraser CBE. Its Patron is Lord Dafydd Wigley and its President is Dame Stephanie Shirley.

Autism Diagnostic Interview-Revised **Abbreviations** ADOS: Autism diagnostic observation schedule ASD: Autism spectrum disorders  **Synonyms** ADI-R  **Description** The Autism Diagnostic Interview-Revised (ADI-R; Le Couteur et al. 2003; Lord et al. 1994) is a standardized, semistructured, investigator-based interview administered by trained clinicians to parents or caregivers of individuals referred for a possible autism spectrum disorder (ASD). The ADI-R includes 93 items in three domains

for a possible autism spectrum disorder (ASD). The ADI-R includes 93 items in three domains of functioning: communication; reciprocal social interactions; and restricted, repetitive, and stereotyped patterns of behavior, as well as other aspects of behaviors. All items in the ADI-R are coded for current and past behavior. Current refers to whether the behavior has occurred in the past 3 months. For some items, “past” refers to whether the behavior “ever” occurred, whereas others ask whether the

some items, “past” refers to whether the behavior “ever” occurred, whereas others ask whether the behavior was present during a specifically defined period between 4 and 5 years of age (referred to as “most abnormal 4 to 5”).

Up to 42 of the interview items are systemati-cally combined to produce a formal, diagnostic algorithm for autism based on the ICD-10 (World Health Organization [WHO] 1990) and DSM-IV (American Psychiatric Association [APA] 1994) criteria as specified by the authors. In addition to the three domains of behavior, there is a fourth domain, abnormality of development evident at or before 36 months, to indicate whether the child meets criteria for age of onset. Each domain has a cutoff; a child

to indicate whether the child meets criteria for age of onset. Each domain has a cutoff; a child must meet or exceed cutoffs in all four areas to receive an ADI-R classification of “autism.” Separate cutoffs are available for the communication domain, depending on whether or not the child is verbal (defined as showing “functional use of spontaneous, echoed, or stereo-typed language that, on a daily basis involves phrases of three words or more that at least some-times include a verb and are

daily basis involves phrases of three words or more that at least some-times include a verb and are comprehensible to other people,” a score of 0 on item 30 overall level of language). Other criteria including using lower cutoffs with the same set of items have been used to create an algorithm for broader classification of autism spectrum disorders (ASD) as in several collaborative studies (Dawson et al. 2004; Lainhart et al. 2006; Risi et al. 2006). The diag-nostic algorithm for children 4

et al. 2004; Lainhart et al. 2006; Risi et al. 2006). The diag-nostic algorithm for children 4 years old and above is based on the “ever/most abnormal” codes, but current behavior algorithm forms are available to facilitate a clinical diagnosis for children from 2 years old and above.

A toddler version of the ADI-R was also devel-oped several years ago to provide descriptive data for research with children under 4 years of age. The Toddler ADI-R has a total of 125 items, including 32 new questions and codes about the onset of autism symptoms and general develop-ment. Other items are identical to the ADI-R, with the exception that the Toddler ADI-R does not have codes for behaviors between 4 and 5 years of age.

Previous analyses suggested that the diagnos-tic algorithm was useful for children with a non-verbal mental age above 2 years (Le Couteur et al. 1989; Lord et al. 1994; Rutter et al. 2003). Thus, the interview had been appropriate for the diag-nostic assessment of any person within the age range extending from early childhood to adult life, provided that they have a nonverbal mental age above 2 years. Recently, however, newly devel-oped algorithms for toddlers and young pre-schoolers have

2 years. Recently, however, newly devel-oped algorithms for toddlers and young pre-schoolers have shown improved predictive validity compared to the preexisting algorithms for young children from 12 to 47 months of age (Kim and Lord 2011). These algorithms extend the use of the ADI-R to children as young as 12 months and a nonverbal developmental level of at least 10 months. In addition, these new algorithms include items present in both the tod-dler and standard versions of the ADI-R, allowing

algorithms include items present in both the tod-dler and standard versions of the ADI-R, allowing for use of the algorithms with either version.

Most items in the ADI-R relate to behaviors that are rare in individuals who do not have ASD and/or who do not have profound intellectual dis-abilities. Thus, numerical estimates of the scores of typically developing children based on general population have not been obtained. However, there have been several comparisons to children and adolescents with other disorders, which have been used in the development of the diagnostic algorithms (Le Couteur et al. 1989; Lord et al. 1994; Kim and Lord

development of the diagnostic algorithms (Le Couteur et al. 1989; Lord et al. 1994; Kim and Lord 2011). Researchers have used individual domain scores or an overall total of the three domains as estimates of autistic symp-tom severity, though the validity of this approach has not been directly tested. Scores have been published for many research populations but not yet systematically dimensionalized.

**Historical Background** The ADI was first developed in 1989 (Le Couteur et al. 1989), which was modified in 1994 (Lord et al. 1994). The 1994 version was somewhat shorter than the original in order to make the interview more feasible in both clinical and research settings. The current version of the ADI-R was published in 2003 by Western Psy-chological Services.

The development of the toddler version of the ADI-R was completed in 2006 for research pur-poses. Following the development of the toddler version of the ADI-R, there was an increase in demand for diagnostic instruments for very young children, which prompted the development of the new diagnostic algorithms for toddlers and young preschoolers (Kim and Lord 2011). The final algorithms for toddlers and young preschoolers contain fewer items than the original algorithms and are appropriate for use

and young preschoolers contain fewer items than the original algorithms and are appropriate for use with children 12–47 months of age.

**Psychometric Data** Psychometric properties for the original ADI were reported for a sample of 16 children and adults with autism and 16 children and adults with intel-lectual disabilities; each group included individ-uals that spanned wide ranges of age and performance IQ (with a mean age of 12.28 years and a standard deviation of 3.43 from a perfor-mance IQ of 43 to 71). Participants were carefully selected and blindly interviewed and coded. Interrater reliability was assessed, with

carefully selected and blindly interviewed and coded. Interrater reliability was assessed, with multirater kappas ranging from 0.25 to 1 for each item. Intraclass correlations were above 0.94 for all subdomain and domain scores. The majority of individual items showed good discriminative validity between the autism group and the group of individuals with nonautism intellectual disabil-ities (Le Couteur et al. 1989).

Psychometric properties for the development of the algorithms for the current ADI-R were based on a sample of 25 children with autism and 25 children with intellectual disabilities who were carefully selected and blindly interviewed and coded (Lord et al. 1994; Rutter et al. 2003). These children ranged in chronological age from 36 to 59 months, with nonverbal mental ages ranging from 21 to 74 months. Using a sample of 10 children, interrater reliability was assessed; multirater kappas ranged

Using a sample of 10 children, interrater reliability was assessed; multirater kappas ranged from 0.63 to 0.89 for each item. Using the same sample, intraclass cor-relations were above 0.92 for all subdomain and domain scores. In addition, after the initial stan-dardization of the ADI-R in 1989, a separate sam-ple of 53 children with autism and 41 nonautistic children with intellectual disabilities or language impairments was used to further assess the valid-ity of the ADI-R (Lord et al. 1993).

or language impairments was used to further assess the valid-ity of the ADI-R (Lord et al. 1993). The results of the study showed that the interrater reliability was as high as the initial study, with multirater kappas ranging from 0.62 to 0.96 for individual items. Test-retest reliability was also very high, with all coefficients in the 0.93–0.97 range.

The majority of individual items in the current ADI-R showed good discriminative validity between children with autism and children with intellectual disabilities (see Lord et al. 1994). The existing algorithms differentiated children with autism over 36 months of age from children with nonspectrum disorders, showing high sensitivity and specificity (both over 0.90). Further analyses of data from preschool children revealed that the ADI-R algorithms differentiated children over 2 years with ASD

preschool children revealed that the ADI-R algorithms differentiated children over 2 years with ASD from those with other develop-mental disorders. However, for children under 2 years, discrimination between nonverbal chil-dren with ASD and nonverbal children without ASD was poor, resulting in low specificity, espe-cially for children with mental ages under 18 months, (Lord et al. 1993).

In a more recent study including a larger sam-ple (Risi et al. 2006), the ADI-R showed high sensitivity (above 80%) for children with ASD under 3 years of age, but lower specificity for the comparison of nonautism ASD versus non-spectrum disorders (around 70%). Ventola et al. (2006) reported that, for children between 16 and 37 months of age, the diagnostic classifications made based upon the ADI-R algorithm resulted in lower sensitivity than those made using the Autism Diagnostic Observation

algorithm resulted in lower sensitivity than those made using the Autism Diagnostic Observation Schedule (ADOS; Lord et al. 1999), Childhood Autism Rating Scale (CARS; Schopler et al. 1980), or clinical judgment using the DSM-IV criteria. Wiggins and Robins (2008) also found that ADI-R algorithms resulted in poor sensitivity for children in the same age range when the standard cutoff for the RRB domain was included in the diagnostic criteria. Given the low sensitivities and specificities being

domain was included in the diagnostic criteria. Given the low sensitivities and specificities being reported for young children, new ADI-R algorithms were developed for tod-dlers and preschoolers between 12 and 47 months of age using a sample of 491 children with ASD, 136 with nonspectrum disorders (NS), and 67 with typical development (Kim and Lord 2011). The new ADI-R algorithms consist of two different cutoff scores: one for research (more restrictive, higher specificity with lower

of two different cutoff scores: one for research (more restrictive, higher specificity with lower sensitivity) and one for clinical purposes (more inclusive, higher sensitivity with lower specific-ity). They also include “ranges of concern” for clinical use (discussed below). In this sample, sensitivity using the clinical cutoff ranged from 80% to 94% and specificity ranged from 70% to 81% for the comparison of nonautism ASD vs. NS. Using the research cutoffs, the comparison of nonautism ASD vs.

comparison of nonautism ASD vs. NS. Using the research cutoffs, the comparison of nonautism ASD vs. NS resulted in sensitivity ranging from 80% to 84% and specificity ranging from 85% to 90%. Another multi-site study (Kim et al. 2013) using two independent datasets pro-vided by National Institute of Health funded con-sortia, the Collaborative Programs for Excellence in Autism, and Studies to Advance Autism Research and Treatment (n = 641) and the National Institute of Mental Health (n = 167)

Autism Research and Treatment (n = 641) and the National Institute of Mental Health (n = 167) rep-licated the results from the original psychometric study, including the diagnostic validity and factor structure of the new algorithms for toddlers and young preschoolers (Kim and Lord 2011). Results suggested that the new ADI-R algorithms can be appropriately applied to existing research data-bases with children from 12 to 47 months and down to nonverbal mental ages of 10 months for diagnostic

with children from 12 to 47 months and down to nonverbal mental ages of 10 months for diagnostic grouping. With a non-US sample, sen-sitivities, especially for those with phrase speech, were lower, using the new algorithms for toddlers and young preschoolers, suggesting that the algo-rithms need to be replicated more with other inde-pendent, non-US samples (de Bildt et al. 2015).

**Clinical Uses** The ADI-R offers a profile of a child, adolescent, or adult which includes information regarding reciprocal social interactions, language and com-munication, and restricted, repetitive, and stereo-typed behaviors and interests. Items are scored based on caregivers’ detailed descriptions of the history and behaviors of their child, thus allowing the clinician to gather both quantitative and qual-itative information. One important caveat for clinical users to recognize is that

and qual-itative information. One important caveat for clinical users to recognize is that diagnostic clas-sifications based on the algorithms and true clin-ical diagnoses are not the same. Clinical diagnosis is based on multiple sources of information, including direct observations (Le Couteur et al. 2007; Risi et al. 2006; Kim and Lord 2012). Risi et al. (2006) found a better balance of sensitivity and specificity when the ADI-R and the ADOS were used in combination compared to when each

and specificity when the ADI-R and the ADOS were used in combination compared to when each instrument was used alone. The combined use of these instruments resulted in sensitivity and spec-ificity of 82% and 86%, respectively, for children with autism compared to children with non-spectrum disorders over age 3 years. For younger children, sensitivity and specificity for the same diagnostic comparison using both instruments were 81% and 87%, respectively. In contrast, when each instrument was used

using both instruments were 81% and 87%, respectively. In contrast, when each instrument was used alone, specific-ities ranged from 59% to 72%. Le Couteur and her colleagues (2007) also examined the combined use of the ADOS and ADI-R for preschoolers with ASD using revised ADOS algorithms (Gotham et al. 2007). Consistent with Risi’s 2006 study, the authors found that combining information from both ADOS and ADI-R pro-vided improved diagnostic accuracy compared to either instrument in isolation.

ADOS and ADI-R pro-vided improved diagnostic accuracy compared to either instrument in isolation. Thus, even though the ADI-R provides information about the individual’s history and description of his or her current functioning from a broad range of contexts, the ADI-R alone cannot be used to make a clinical diagnosis.

The diagnostic algorithm cutoffs allow classi-fication of ASD based on patterns of behavior, meeting the current DSM-IVor ICD-10 diagnostic criteria for autistic disorder. In addition to single cutoff scores, the new algorithms for toddlers and young preschoolers provide clinicians and researchers with several different options for the diagnostic classification of young children. For clinical purposes, ranges of concern (little-to-no concern, mild-to-moderate concern, and moderate-to-severe

purposes, ranges of concern (little-to-no concern, mild-to-moderate concern, and moderate-to-severe concern) that represent the severity of autism symptoms in young children are also provided. A clinician or a researcher can use these ranges of concern to inform decisions about whether or not a child should be followed up with further assessments or should be quickly referred for treatment services irrespective of diag-nostic cutoffs. Scores that fall in the little-to-no range of concern

services irrespective of diag-nostic cutoffs. Scores that fall in the little-to-no range of concern indicate that the child is reported to have no more behaviors associated with ASD than children in the same age range who do not have ASD. On the contrary, a child who scores in the mild-to-moderate range has a number of behav-iors consistent with, but perhaps not unique to, ASD. For clinical purposes, children in the mild-to-moderate or moderate-to-severe ranges of con-cern should receive

purposes, children in the mild-to-moderate or moderate-to-severe ranges of con-cern should receive further evaluation and follow-up, including other cognitive and language assess-ments, and recommendations for treatment. In addition to ranges of concern, single cutoff score can be used when more strictly stratified groupings are necessary, such as for intervention, neuroimag-ing, or genetic research. These different alterna-tives allow clinicians and researchers to be transparent about the

These different alterna-tives allow clinicians and researchers to be transparent about the choices they make, recogniz-ing that diagnostic decisions about ASD in very young children are less stable and precise than for older children and adolescents.

In addition to the diagnostic algorithms, the ADI-R includes a current behavior algorithm form that can be used in clinical settings to assess changes that occur during or after interventions or that may reflect increasing developmental matu-rity or changing life circumstances. Because the current behavior algorithm form has not been empirically validated, it is not intended to be used as a diagnostic algorithm. The development of a new algorithm is underway by the authors in anticipation of an

algorithm. The development of a new algorithm is underway by the authors in anticipation of an updated protocol and algorithm with new criteria. A shorter version of the ADI-R that can be used over the phone is also in the process of being developed and validated.

The ADI-R provides a useful structure to obtain history and understand a caregiver’s per-spective on his or her child’s symptoms associated with ASD. However, it requires substantial prac-tice to administer reliably, and it takes approxi-mately 2–3 h to administer. The ADI-R should only be used by appropriately experienced clini-cians who are familiar with ASD and relevant behaviors. Training workshops and videotapes are available to help clinicians and researchers understand the scoring and

and videotapes are available to help clinicians and researchers understand the scoring and administration of the ADI-R. For research use, interviewers must meet standards for reliability.

In a recent effort to identify children with ASD more efficiently, a brief parent interview, Autism Symptom Interview (ASI; 15–20 min), has been designed primarily as a case confirmation tool for ASD (Bishop et al. 2017). The ASI has been based on questions from the ADI-R. Based on school-age children ranging from 5–12 years of age, the verbal algorithm yielded a sensitivity of 0.87 (95% CI = 0.81–0.92) and a specificity of 0.62 (95% CI = 0.53–0.70). When used in conjunction with the ADOS,

= 0.81–0.92) and a specificity of 0.62 (95% CI = 0.53–0.70). When used in conjunction with the ADOS, sensitivity and specificity were 0.82 (95% CI = 0.74–0.88) and 0.92 (95% CI = 0.86–0.96), respectively. Internal consis-tency and test-retest reliability were both excel-lent. Based on these results, the authors have con-cluded that particularly for verbal school age children, the ASI may serve as a useful tool to more quickly ascertain or classify children with ASD for research or clinical

as a useful tool to more quickly ascertain or classify children with ASD for research or clinical triaging purposes. Additional data collection is underway to deter-mine the utility of the ASI in children who are younger and/or nonverbal.

**See Also** *   Autism Diagnostic Observation Schedule *   Autism Diagnostic Observation Schedule (ADOS): Toddler Module  Autism Diagnostic Observation Schedule **Synonyms** ADOS  **Description** The Autism Diagnostic Observation Schedule (ADOS) is a semi-structured observation scale designed to observe social behavior and commu-nication in children and adults referred for possi-ble diagnosis of autism spectrum disorder (ASD). Originally developed as a research instrument, it became

of autism spectrum disorder (ASD). Originally developed as a research instrument, it became commercially available through Western Psychological Services in 2001 (Lord et al. 1999) and is used widely in clinical, school, community, and research settings. The goal of the ADOS is twofold: to help clinicians and researchers discriminate autism from other disorders and typically developing individuals and to character-ize social and communicative behaviors associ-ated with autism (Lord et al.

and to character-ize social and communicative behaviors associ-ated with autism (Lord et al. 1989). It is often used in conjunction with the Autism Diagnostic Interview-Revised (ADI-R; Rutter et al. 2003), a parent interview. When used by a skilled clinician, together, these two instruments form the “gold standard” for the diagnosis of ASD.

The format of the ADOS is unique. It is a structured interaction between an examiner and individual in which the examiner’s behavior is standardized using a hierarchy of structured and unstructured social behaviors. The examiner cre-ates a “social world” in which occasions for spe-cific behaviors are purposefully orchestrated in order to observe the presence – or absence – of an expected response. For example, with an older child or adult with fluent language, the examiner might initiate a

For example, with an older child or adult with fluent language, the examiner might initiate a conversation and observe whether the individual participates in a reciprocal exchange or asks about the examiner’s experi-ences. With a child or adolescent with limited language, the examiner might observe whether the individual conveys shared enjoyment in an activity, such as bubble play, by smiling, laughing, or requesting for the activity to con-tinue. The ADOS goes beyond measuring the frequency of

or requesting for the activity to con-tinue. The ADOS goes beyond measuring the frequency of behaviors and also focuses on the quality of social behavior, allowing the examiner to make informed decisions regarding the pres-ence of features associated with a diagnosis of ASD. Because of the movement between struc-tured and unstructured tasks, and the need for keen observation within such tasks, it is impera-tive the ADOS is administered by a skilled exam-iner familiar with ASD.

The original version of the ADOS (Lord et al. 2000) consists of four modules based on age and language level, with “higher” modules generally requiring more language and social demands. Each module takes approximately 35–60 min to administer. Module 1 is for individuals with a minimum of no speech or the emergence of simple phrases. Module 2 is designed for individuals who use flexible three-word phrases, but are not yet speaking fluently. Modules 3 and 4 are for indi-viduals with fluent speech.

phrases, but are not yet speaking fluently. Modules 3 and 4 are for indi-viduals with fluent speech. For the purposes of the ADOS, three-word phrases are defined as “regular spontaneous meaningful use of three-word utter-ances including a verb,” while fluent speech is defined as “producing a range of flexible sentence types, providing language behavior the immediate context and describing logical connections within a sentence” (Lord et al. 1999).

Though each module of the ADOS has differ-ent language requirements, the overall format and structure is the same. In fact, there is considerable overlap of tasks across modules. In each module, the examiner interacts with the individual, admin-istering a series of tasks, or “presses” for particular social behaviors. Modules 1 and 2 are conducted while moving around a room and include play-based tasks appropriate for young children or individuals with very limited language. Modules 3 and 4

tasks appropriate for young children or individuals with very limited language. Modules 3 and 4 generally take place while sitting at a table and include tasks involving more conversation.

Immediately after the administration of all tasks, the examiner rates the individual’s behavior on items across domains including communica-tion, social interaction, play or imagination, and stereotyped behaviors and restricted interests. Ratings, or codes, are made on an ordinal scale from 0 to 3, with 0 indicating no evidence of abnormality related to autism and 3 indicating definite evidence, such that behavior interferes with interaction. Selected items from each domain are used to generate

that behavior interferes with interaction. Selected items from each domain are used to generate a diagnostic algorithm. These items were selected for their ability to discrimi-nate between ASD and nonspectrum disorders and also for their relevance to DSM-IV and ICD-10 criteria. A classification of autism or non-autism ASD is made when thresholds on the social affect and restricted and repetitive behavior domains, and a combined social affect and restricted and repetitive behavior total, are

behavior domains, and a combined social affect and restricted and repetitive behavior total, are exceeded. When combined with information from other sources, including but not limited to a parent interview and clinical judgment, an ADOS classification of autism or ASD may lead to a diagnosis on the spectrum.

Since its publication by WPS in 1999, the ADOS has expanded considerably. Revised algo-rithms for modules 1–3 were developed to improve the instrument’s sensitivity and specific-ity (Gotham et al. 2007), and a toddler module appropriate for children under 30 months old has been available for research purposes (Luyster et al. 2009). The revised ADOS algorithms and the new toddler module were released commer-cially by WPS in 2012 in the second edition of the ADOS (ADOS-2; Lord et al. 2012a, b)

commer-cially by WPS in 2012 in the second edition of the ADOS (ADOS-2; Lord et al. 2012a, b) (see Table 1 for a summary of ADOS algorithms). Adapted versions of modules 1 and 2 with modi-fied tasks and materials are in development for adolescents and adults with limited language (Hus et al. 2011).The ADOS-Change (ADOS-C; Colombi et al. 2011), a measure using ADOS item descriptions with expanded codes ranging from 0 to 5, has also been created. This measure is scored by watching an unstructured

ranging from 0 to 5, has also been created. This measure is scored by watching an unstructured interaction between an adult and child and will be used to measure response to intervention in young children.

**Historical Background** The first version of the ADOS (Lord et al. 1989) was intended for individuals between five and 12 years old, with an expressive language level of at least three years. It included only eight tasks, with two sets of materials based on developmental level and chronological age. The validation sam-ple included 20 children and adolescents with autism and 20 children with intellectual disability matched for chronological age, verbal IQ, and gender. The measure showed promise

disability matched for chronological age, verbal IQ, and gender. The measure showed promise in distinguishing children with autism from those with intellectual disability.

As public awareness of autism increased and more younger and nonverbal children were referred to clinics for diagnostic evaluations, there became a need to develop a “downward extension” of the ADOS that would be appropri-ate for younger children with no-phrase speech. The Pre-Linguistic Autism Diagnostic Observa-tion Schedule (PL-ADOS; DiLavore and Lord 1995) was intended for children less than 6 years old with limited language. It included 12 tasks with 31 overall ratings. All tasks were

6 years old with limited language. It included 12 tasks with 31 overall ratings. All tasks were adminis-tered in the context of play and were informed by the increasing amount of research on early indi-cators of autism, particularly those studies focus-ing on joint attention, functional and symbolic play, imitation, and early patterns of language development. The PL-ADOS was validated on a sample of 63 children with autism or developmen-tal delay and matched for chronological age or language

of 63 children with autism or developmen-tal delay and matched for chronological age or language level. Overall, the algorithm was suc-cessful at differentiating autism from develop-mental delay, but its performance was not as good when discriminating verbal children with autism from nonverbal children with develop-mental delay, and children with autism who had some expressive language tended to be underclassified by the instrument.

The ADOS-Generic (ADOS-G; Lord et al. 2000) was developed directly from its original version (Lord et al. 1989) and the PL-ADOS (DiLavore and Lord 1995). It aimed to improve the tendencies to overdiagnose autism in children with insufficient language ability and underdiag-nose children with higher language abilities. Fur-thermore, it sought to extend the current tasks to be appropriate for adolescents and adults. The ADOS-G differed from its predecessors in that it spanned a broader

for adolescents and adults. The ADOS-G differed from its predecessors in that it spanned a broader developmental and age range and was the first to introduce the use of modules across different developmental and language levels. It was also the first version to provide continuous scores from ASD to autism, thus mak-ing it applicable for children with broader ranges of social and communication impairments.

The ADOS-G was normed on a sample of 381 children, adolescents, and adults spanning a broader diversity of spectrum and nonspectrum disorders. The sample included a group of individuals diagnosed with autism, PDD-NOS, and a group designated as “nonspectrum,” which included individuals with diagnoses of mental retardation, language disorder, attention-deficit/ hyperactivity disorder, oppositional defiant disorder, anxiety, depression, and obsessive-compulsive disorder and children who were

defiant disorder, anxiety, depression, and obsessive-compulsive disorder and children who were typi-cally developing. The ADOS-G algorithms were successful at discriminating ASD from non-spectrum, but were not as good at making distinc-tions between children with milder forms of ASD. Upon WPS publication of the ADOS-G in 1999, the “G” was dropped and the instrument became solely known as the ADOS. Gotham et al. (2007) and colleagues sought to improve the diagnostic validity of the ADOS by

ADOS. Gotham et al. (2007) and colleagues sought to improve the diagnostic validity of the ADOS by validating revised algo-rithms for modules 1–3 on a significantly larger sample of children with ASD and nonspectrum diagnoses. The new algorithms were grouped into developmental cells to reduce the effects of age and IQ and included more similar items across modules with the same number of items per algorithm to increase comparability. Factor analyses yielded two domains representing features of

algorithm to increase comparability. Factor analyses yielded two domains representing features of social affect and restricted and repetitive behaviors (RRBs); thus, the new algorithms required thresholds to be met in social affect, RRB, and a combined total, in order to meet classification criteria for autism or ASD. This was a significant departure from earlier versions of the ADOS in which RRBs were not included on the algorithm and social interaction and communication were considered

RRBs were not included on the algorithm and social interaction and communication were considered separately. Specificity in children with nonverbal mental ages of 15 months and younger continued to pose prob-lems in distinguishing children with ASD from those with other language-based disorders or intel-lectual disability. Since the publication of the revised algorithms, however, several replications with larger and more diverse samples have been conducted with consistent results supporting the

with larger and more diverse samples have been conducted with consistent results supporting the improved diagnostic validity of the new algorithms.

Though higher scores on the ADOS do indi-cate a greater number of behaviors consistent with core deficits of ASD and, to some degree, greater severity of impairment, ADOS scores were not standardized for this purpose. The creation of revised algorithms paved the way for the devel-opment of calibrated severity scores (Gotham et al. 2009). Severity scores that reduced the effects of IQ and chronological age were devel-oped to promote the comparison of ADOS assess-ments over time, age, and module

age were devel-oped to promote the comparison of ADOS assess-ments over time, age, and module and to identify trajectories of autism severity. Raw scores have been mapped onto a 10-point severity metric with lower scores indicating less autism impairment.

As calibrated severity scores were being devel-oped, a new module of the ADOS, the ADOS-Toddler, was also underway. Advancements in the understanding of autism in very young children, particularly infants and toddlers, increased the need for diagnostic tools appropriate for use in that developmental level. Because the ADOS, even with revised algorithms, had limited appli-cability for children with nonverbal mental ages below 15 months, the toddler module was created. The toddler module

with nonverbal mental ages below 15 months, the toddler module was created. The toddler module consists of a combination of ADOS and some new tasks and is intended for use in children 12–30 months chronological age, with nonverbal mental ages of at least 12 months, and who are walking independently. It includes two algorithms, nonverbal 12–20 months/ 12–30 months and verbal 21–30 months. Because of the relative instability of diagnostic classifica-tions in very young children, the toddler

of the relative instability of diagnostic classifica-tions in very young children, the toddler algo-rithms differ from those of the ADOS-G in two ways. First, they yield research classifications of ASD or nonspectrum and do not make distinc-tions between autism and ASD, and second, they provide clinical “ranges of concern,” (little-to-no, mild-to-moderate, and moderate-to-severe con-cern for ASD) indicating the degree of need for continued clinical monitoring.

The ADOS has developed considerably since the first 1989 version, and research on expanded applications of the instrument continues today. Continued testing of the ADOS is occurring in clinical and community-based settings, in addi-tion to the application of translated versions for use in languages other than English.

Autism Diagnostic Observation Schedule, Table 1 ADOS algorithms | Module | T | Module T | Module 1 | Module 1 | Module 2 | Module 3 | Module 4 | Adapted module 1 | Adapted module 2 |
|---|---|---|---|---|---|---|---|---|---| | Age | No words | Some words | <5 words | Single words | Phrases | Fluent | Fluent | No words | Some words |

| 12–30 m | X | | | | | | | | | | 21–30 m | | X | X | | | | | | | | 30–35 m | | | X | X | | | | | | | 3–4 years | | | X | X | X | X | | | | | 5–9 years | | | | | X | X | X | | | | 10+ years | | | | | X | X | X | X | X |  Autism Diagnostic Observation Schedule, Table 2 History of the ADOS in JADD publications

| Publication | Contribution | |---|---| | Autism Diagnostic Observation Schedule: A Standardized Observation of Communicative and Social Behavior (Lord et al. 1989) | First published version of the ADOS |
| The Pre-Linguistic Autism Diagnostic Observation Schedule (DiLavore and Lord 1995) | Introduction of alternate version of ADOS more appropriate for individuals with very limited language |

| The Autism Diagnostic Observation Schedule-Generic: A Standard Measure of Social and Communication Deficits Associated with the Spectrum of Autism (Lord et al. 2000) | Consolidation of ADOS and PL-ADOS<br>Introduction of four module structure<br>Appropriate for broader range of social communication deficits and age<br>Accompanied by commercial release of ADOS by Western Psychological Services (Lord et al. 1999) |

| The Autism Diagnostic Observation Schedule: Revised Algorithms for Improved Diagnostic Validity (Gotham et al. 2007) | Revised algorithms for improved diagnostic validity<br>Algorithms grouped by developmental and language ability<br>Inclusion of restricted and repetitive behaviors in algorithm totals |

| The Autism Diagnostic Observation Schedule-Toddler Module: A New Module of a Standardized Diagnostic Measure for Autism Spectrum Disorders (Luyster et al. 2009) | Introduction of ADOS-Toddler<br>Appropriate for use in children under 30 months with mental age of at least 12 months |
| Standardizing ADOS Scores for Measure of Severity in Autism Spectrum Disorders (Gotham et al. 2009) | Created standardized severity metric to measure change in ADOS assessments over time, age, and module |

**Psychometric Data** Reliability. Across all ADOS modules, intraclass correlations for the social, communication, social communication, and restricted and repetitive domains were 0.93, 0.84, 0.92, and 0.82, respec-tively, and mean weighted kappas across items ranged from 0.65 to 0.78. Test-retest reliability ranged from 0.59 to 0.82. For the toddler module, intraclass correlation was 0.96 for the entire pro-tocol and mean weighted kappa was 0.67. Test-retest reliability was 0.86 for the

for the entire pro-tocol and mean weighted kappa was 0.67. Test-retest reliability was 0.86 for the 12–20/21–30 nonverbal algorithm and 0.95 for verbal 21–30. Interrater reliability across all modules is reported in Table 3.

Diagnostic validity. Algorithm cutoffs for the ADOS were excellent for autism and ASD rela-tive to nonspectrum disorders, with even greater performance with the introduction of revised algorithms. Algorithm cutoffs for the toddler module yielded high sensitivity and specificity. Sensitivities and specificities for current and revised algorithms of the ADOS are reported in Tables 4 and 5 and in Table 6 for the toddler module algorithms.

Autism Diagnostic Observation Schedule, Table 3 Interrater reliability: percent agreement
| | Toddler | Module 1b | Module 2b | Module 3b | Module 4b | |---|---|---|---|---|---| | Interrater (items) | 84 | 91.5 | 89 | 88.2 | 88.3 | | Interrater (algorithm) | 87 | 93 | 87 | 81 | 84 | aLuyster et al. 2009 bLord et al. 2000  Autism Diagnostic Observation Schedule, Table 4 Sensitivities and specificities for current and revised ADOS algorithms: autism versus nonspectrum (Gotham et al. 2007)

N = 1157 | | Current ADOS classification Se | Current ADOS classification Sp | Revised ADOS classification Se | Revised ADOS classification Sp |

|---|---|---|---|---| | Mod 1, no words, nvma <=15 | 100 | 19 | 97 | 50 | | Mod 1, no words, nvma >15 | 97 | 91 | 95 | 94 | | Mod 1, some words | 88 | 96 | 97 | 91 | | Mod 2, younger | 97 | 93 | 98 | 93 | | Mod 2, age 5+ | 96 | 97 | 98 | 90 | | Mod 3 | 86 | 89 | 91 | 84 | | Mod 4 | 93 | 93 | N/A | N/A |  Autism Diagnostic Observation Schedule, Table 5 Sensitivities and specificities for current and revised ADOS algorithms: non-autism ASD versus nonspectrum (Gotham et al. 2007)

N = 685 | | Current ADOS classification Se | Current ADOS classification Sp | Revised ADOS classification Se | Revised ADOS classification Sp |

|---|---|---|---|---| | Mod 1, no words, nvma <=15 | 95 | 6 | 95 | 19 | | Mod 1, no words, nvma >15 | 88 | 67 | 82 | 79 | | Mod 1, some words | 67 | 84 | 77 | 82 | | Mod 2, younger | 76 | 70 | 84 | 77 | | Mod 2, age 5+ | 86 | 77 | 83 | 83 | | Mod 3 | 68 | 77 | 72 | 76 | | Mod 4 | 86 | 93 | N/A | N/A |  **Clinical Uses** The ADOS is intended for use by clinicians famil-iar with autism. Valid administration and interpre-tation of results is dependent on the clinical skill of the examiner and

and interpre-tation of results is dependent on the clinical skill of the examiner and requires substantial training. The ADOS can be used clinically upon comple-tion of a two-day WPS-certified clinical course or from WPS training DVDs. Even with training, however, administration of the ADOS should not be attempted without significant practice in administering the tasks, in observing features of autism as specified by the ADOS items, and in scoring. For those using the ADOS in research settings,

as specified by the ADOS items, and in scoring. For those using the ADOS in research settings, more rigorous requirements for use exist. Individuals must attend a standardized training workshop and then obtain reliability with work-shop leaders and within the research site. As specified in Lord et al. (2000), research reliability is defined as agreement of 80% or above on ADOS protocols and algorithms on three consec-utive scorings for modules 1 and 2 and modules 3 and 4, separately.

Selecting the correct module for use in the ADOS is also crucial for obtaining an accurate classification. Clinicians and researchers can use the results of standardized tests or parent report to inform module choice, but as an individual’s lan-guage often varies in unstructured versus struc-tured environments, the collection of a spontaneous language sample at the beginning of an ADOS administration is highly recommended. Administration of an “easier” module (e.g., selecting module 2 for a

is highly recommended. Administration of an “easier” module (e.g., selecting module 2 for a child with fluent speech because the tasks are “more fun” when module 3 would be more appropriate) can result in under classification. When in doubt, however, a clini-cian should adopt a conservative approach and chose a lower module as language difficulties may confound the social demands of a higher one.

Perhaps the most important practice in using the ADOS is to recognize its limitations. The ADOS is only one of multiple sources of information that should be considered when determining whether criteria for ASD are met. It is possible to meet classification thresholds on the ADOS algorithm and not meet formal criteria for an autism diagno-sis. Conversely, a clinician with information from parent report and observations in different settings may assign a diagnosis of ASD even without an

parent report and observations in different settings may assign a diagnosis of ASD even without an accompanying ADOS classification. The ADOS was developed as a companion instrument to the ADI-R, and indeed, both the ADOS and ADI yield higher sensitivities and specificities together than when used separately (Risi et al. 2006). In the hands of a skilled clinician with ample training and mul-tiple sources of information, the ADOS provides a unique contribution to the observation of social and

sources of information, the ADOS provides a unique contribution to the observation of social and communicative features of autism and greatly aids in the diagnosis of ASD.

**See Also** *   Autism Diagnostic Interview-Revised *   Autism Diagnostic Observation Schedule (ADOS): Toddler Module *   Prelinguistic Autism Diagnostic Observation Schedule  Autism Diagnostic Observation Schedule (ADOS): Toddler Module **Synonyms** ADOS-T  **Description** The Autism Diagnostic Observation Schedule – Toddler Module (or ADOS-T; Luyster et al. 2009; Lord et al. 2012) – is a semi-structured assessment of social engagement, communication, and play using a set of planned

a semi-structured assessment of social engagement, communication, and play using a set of planned “presses” within a natural-istic social interaction. It is intended for children under 30 months of age who have a nonverbal mental age of at least 12 months. Other guidelines for use include independent walking and minimal language; once the child masters three-word phrases, the Toddler Module is no longer consid-ered appropriate.

Eleven activities are included in the Toddler Module, along with 41 overall codes. Two algo-rithms are associated with the module, including one for all children between 12 and 20 months of age and nonverbal children between 21 and 30 months of age and a second algorithm for verbal children between 21 and 30 months of age. These algorithms include formal cutoffs, which are primarily intended for research use and provide a binary classification of ASD or nonspectrum. Each algorithm also has

for research use and provide a binary classification of ASD or nonspectrum. Each algorithm also has three “ranges of concern,” which are intended for clin-ical use and provide three classifications of con-cern: little to no, mild to moderate, and moderate to severe. The Toddler Module can be adminis-tered in a professional’s office or playroom, although a familiar caregiver must be present. Codes are completed immediately after Toddler Module completion and are based on all behaviors during the

are completed immediately after Toddler Module completion and are based on all behaviors during the administration. Each code can be scored between 0 and 3, with higher scores indic-ative of greater abnormality.

**Historical Background** The Toddler Module was developed in response to a research and clinical need for a standardized instrument for use in very young children at high risk for, or suspected of having, an autism spec-trum disorder (ASD). Research had indicated that the ADOS Module 1 was over-inclusive (meaning it exhibited relatively poor specificity) for chil-dren with nonverbal mental ages under 16 months (Gotham et al. 2007). The Toddler Module was developed for use in this very young

under 16 months (Gotham et al. 2007). The Toddler Module was developed for use in this very young population and was intended to aid in both clinical and research efforts targeted at children who fell below the floor of the ADOS.

The creation of the Toddler Module was based primarily on the Module 1 of the ADOS (Lord et al. 2000), which provides a series of semi-structured, play-based tasks and activities to probe for a range of behaviors. Module 1 items that were appropriate for infants and toddlers were included, and additional tasks were created based on a review of the literature on early social and communicative development. Some other impor-tant changes were made based on current knowl-edge of early development

Some other impor-tant changes were made based on current knowl-edge of early development in children with ASD, including a shift from three classifications on the algorithm (autism, ASD, nonspectrum) to two (ASD, nonspectrum), based on extensive evi-dence of the instability of specific diagnoses within the autism spectrum. For similar reasons, an emphasis was placed on using algorithm ranges of concern in order to encourage a focus on clinical monitoring and follow-up rather than assigning a

concern in order to encourage a focus on clinical monitoring and follow-up rather than assigning a formal diagnosis to a very young child.

**Psychometric Data** Instrument development involved both validity and reliability studies (Lord et al. 2012). The validity study was completed using data from 182 children. Analyses were repeated using two overlapping samples, one of which included each child only once and a second that included multi-ple visits from some children. The final set of 41 codes was selected in order to yield markedly different distributions across diagnostic groups or to have high clinical or theoretical

markedly different distributions across diagnostic groups or to have high clinical or theoretical importance. In addition, codes were chosen in a manner that minimized collinearity with other codes or sample characteristics. Two algorithms were generated by selecting items that met theoretical and empirical thresholds for optimal group classification. Each algorithm includes items in two domains – social affect (SA) and restricted, repetitive behaviors (RRB) – and cutoff scores were selected

– social affect (SA) and restricted, repetitive behaviors (RRB) – and cutoff scores were selected based on maximal sensitivity and specificity. Using for-mal cutoffs, sensitivity and specificity exceeded 86% on the younger/nonverbal algorithm, and they exceeded 83% on the verbal algorithm.

The reliability study included ratings from 7 independent, “blind” raters on 14 Toddler Mod-ule administrations (8 from children with ASD, 3 from typically developing children, and 2 from children with non-ASD developmental disabil-ities, one child contributed two administrations). Inter-rater reliability was evaluated using weighted kappas for nonunique pairs of raters, with kappas between 0.4 and 0.74 considered good and kappas at or above 0.75 considered excellent. Three codes were not

0.4 and 0.74 considered good and kappas at or above 0.75 considered excellent. Three codes were not included in the reliability analyses because of limited variability; 30 codes had kappas equal to or above 0.60, and the remaining eight codes exceeded 0.45. Inter-rater item reliability was measured using percent agreement and the full range of 0–3 scores: the mean percent agreement was 84%. All items exceeded 71%, and 30 of 41 items had exact agreement of at least 80%. Inter-rater agreement on

exceeded 71%, and 30 of 41 items had exact agreement of at least 80%. Inter-rater agreement on the algorithms’ (younger/nonverbal and ver-bal) diagnostic cutoffs was 97% and 87%, respec-tively; inter-rater agreement for ranges of concern was 70% and 87%, respectively. Test-retest reliability was also satisfactory across both algorithms.

Note that although standardized calibrated severity scores are not available as a formal com-ponent of the instrument (Lord et al. 2012), research suggests that they may be helpful in reducing the effects of language level on algo-rithm totals (Esler et al. 2015).
 Autism Diagnostic Observation Schedule, Table 6 Sensitivities and specificities for toddler module algorithms: ASD versus nonspectrum (Luyster et al. 2009)

N = 234 | | Se | Sp | |---|---|---| | 12–20/nonverbal 21–30 | 87 | 86 | | Verbal 21–30 | 81 | 83 |  **Clinical Uses** Clinical usage of the Toddler Module should be accompanied by other sources of information. The ranges of concern may be useful in providing an indication of the degree to which a child is exhibiting symptoms consistent with an ASD, but in some cases, these behaviors may be attrib-utable to other, non-ASD etiologies. Therefore, informed clinical judgment is critical in

be attrib-utable to other, non-ASD etiologies. Therefore, informed clinical judgment is critical in inter-preting results within a broader developmental framework. Examining the profile of scores across the 41 codes may be useful in identifying areas of difficulty for the child and can help in education and intervention planning.

**See Also** *   Prelinguistic Autism Diagnostic Observation Schedule  Autism Family Experience Questionnaire (AFEQ) **Synonyms** Autism spectrum disorder (ASD); General health questionnaire-12 (GHQ-12); Pre-school autism communication trial (PACT trial); Pediatric autism communication therapy (PACT therapy); United kingdom (UK); Vineland adaptive behavior scales (VABS); Warwick-edinburgh mental wellbeing scale (WEMWBS)

**Description** The Autism Family Experience Questionnaire (AFEQ; Leadbitter et al. 2018) is an ecologically valid questionnaire that measures the intervention priorities of parents/caregivers of children with autism spectrum disorder (ASD) and assesses the impact of interventions on family experience and quality of life. The AFEQ was developed in con-sultation with parents/caregivers of children with ASD and was designed to address the paucity of outcome measures that assess

of children with ASD and was designed to address the paucity of outcome measures that assess parent/caregiver-nominated intervention outcomes for autistic chil-dren and their families (McConachie et al. 2015; Morris et al. 2014, 2015). It can be used for both research and clinical purposes.

The AFEQ has 48 items. Items are organized into four domains: (1) experience of being a parent of a child with autism (13 items); (2) family life (9 items); (3) child development (development, understanding, and social relation-ships; 14 items); and (4) child symptoms (feelings and behavior; 12 items). The questionnaire is designed to be self-rated by parents. Instructions are: “Please read each statement carefully and tick the box which you think best fits your feelings about you, your child

statement carefully and tick the box which you think best fits your feelings about you, your child with autism and your family life.” Items include both positively and negatively worded statements and are scored on an order scale: 1 = always to 5 = never, with an option for “not applicable”. Items that are negatively worded are reverse scored; individual missing data points can be prorated with the mean score of all items for that participant. The AFEQ pro-duces a total score (range = 48–240)

the mean score of all items for that participant. The AFEQ pro-duces a total score (range = 48–240) and domain scores which can be used to assess group differ-ences or within-participant/within-group change over time. On the AFEQ a lower score indicates a positive outcome, and a higher score is a poor outcome. There are no clinical or case thresholds. The AFEQ is being used as an outcome measure in current United Kingdom (UK) and international clinical trials. It is also being used in

measure in current United Kingdom (UK) and international clinical trials. It is also being used in observational studies in several different countries. We invite other researchers and clinicians to utilize the AFEQ. A copy of the questionnaire can be accessed in open-access at: https://link.springer.com/article/10. 1007/s10803-017-3350-7#SupplementaryMaterial. Scoring guidelines can be accessed directly from the author (Kathy.Leadbitter@manchester.ac.uk). The questionnaire has been translated

directly from the author (Kathy.Leadbitter@manchester.ac.uk). The questionnaire has been translated from English into several other languages. Please con-tact the author for further information on available languages and/or the translation procedures. We ask that you appropriately cite our work and keep us informed about your research, its findings, and any planned publications or outputs relating to the AFEQ measure.

**Historical Background** The AFEQ was developed prior to and in prepa-ration for the UK Medical Research Council Pre-school Autism Communication Trial (PACT Trial) as part of a broader strategy adopted by the trial team and funders to promote the involve-ment of service users in pretrial research design and out of the recognition that there was a mea-surement gap in relation to parent-generated out-come measures and assessments of family experience and child and family well-being. The PACT

out-come measures and assessments of family experience and child and family well-being. The PACT Trial was a two-arm parallel-group ran-domized controlled trial of Pediatric Autism Com-munication Therapy (PACT Therapy) – a parent-mediated video-aided communication-focused intervention for preschool children with ASD and their parents. The trial ran between 2006 and 2009 across three UK centers and evaluated the effectiveness of PACT therapy plus treatment-as-usual against treatment-as-usual

and evaluated the effectiveness of PACT therapy plus treatment-as-usual against treatment-as-usual alone in 152 pre-school children with core autism (Green et al. 2010). A subsequent follow-up study assessed outcomes at 6 years after the end of the treatment phase (Pickles et al. 2016). The PACT Trial commissioning and protocol included a pre-specified strategy to develop a new parent-generated change measure of child and family well-being that could be used within the trial and suitable for

change measure of child and family well-being that could be used within the trial and suitable for future intervention research.

The AFEQ questionnaire was developed through three phases. Firstly, a series of pretrial focus groups was conducted with 31 parents of children with ASD to generate a core set of param-eters that parents identified as the most important outcomes of a preschool intervention for ASD. Focus group transcripts were analyzed with the-matic analysis. A set of 78 individual statements were abstracted from the thematic analysis themes to serve as response items within the draft ques-tionnaire. Secondly,

the thematic analysis themes to serve as response items within the draft ques-tionnaire. Secondly, a large pretrial web-based con-sultation in collaboration with the UK National Autistic Society (www.autism.org.uk) subjected the 78 statements to wider review to evaluate the clarity and usefulness of the items. Using the data from the online consultation, low-performing items were discarded, resulting in a questionnaire with 56 well-performing items. This questionnaire was rated by 152 parents

in a questionnaire with 56 well-performing items. This questionnaire was rated by 152 parents as part of the baseline and 12-month follow-up assessments of the PACT Trial. Parents reported that they found the question-naire easy to complete and that they valued the opportunity to report real-life experiences for their children and family on metrics nominated by other parents of autistic children. Following further data cleaning, an additional eight items were excluded as they generated too much

Following further data cleaning, an additional eight items were excluded as they generated too much missing data. The resulting 48-item questionnaire was named the Autism Family Experience Questionnaire. The 48-item AFEQ was then used in the PACT trial 6-year follow-up study.

A planned analysis within the PACT trial pro-tocol was to use data from the trial to evaluate the psychometric properties of the AFEQ (see below; also Leadbitter et al. 2018). It was also planned to use the questionnaire as a trial outcome measure, to assess the estimation of treatment effect of PACT therapy over treatment-as-usual on parent-prioritized outcomes, family experience, and quality of life. On the 48-item AFEQ total score, there was a statistically significant improvement in the

of life. On the 48-item AFEQ total score, there was a statistically significant improvement in the PACT group over the treatment-as-usual group at both trial endpoint (Cohen’s d = -0.29) and at 6-year follow-up (Cohen’s d = -0.49). There were also treatment effects at trial endpoint on two domain scores: the “expe-rience of being a parent” domain and the “child development” domain. These findings provided evidence that the AFEQ total score, and to some extent its domain scores, were sensitive to

evidence that the AFEQ total score, and to some extent its domain scores, were sensitive to change in response to a parent-mediated intervention for young children with ASD.

**Psychometric Data** Descriptive data: In the validation cohort (PACT Trial sample – see above), the range of AFEQ total scores across three measurement timepoints was 64–196, with means of 132–141, medians of 133–141, and standard deviations of 21.3–24.6.

Internal consistency: The AFEQ has good internal consistency. To assess the internal consis-tency of the AFEQ, we examined the scale reli-ability based on Cronbach’s alpha for the total score and domain scores, calculated from PACT Trial baseline data. The total score and all domains demonstrated excellent levels of reliabil-ity: AFEQ total (alpha = 0.92), parent (0.85), family (0.83), child development (0.81), and child symptoms (0.79).

Criterion validity: We assessed the external cri-terion validity of the AFEQ against (a) the parental Vineland Adaptive Behavior Scales (VABS; Second Edition; Sparrow et al. 2006), a well-validated parent-rated scale of child adaptive functioning; (b) the General Health Questionnaire-12 (GHQ-12; Goldberg 1992), a well-established measure of adult mental health; and (c) the Warwick-Edinburgh Men-tal Wellbeing Scale (WEMWBS; Tennant et al. 2007), a widely used measure of adult well-being. The

Wellbeing Scale (WEMWBS; Tennant et al. 2007), a widely used measure of adult well-being. The correlations between the VABS total score and AFEQ child development domain score (items 23–36; 14 items) were moderate to strong across the three timepoints (r = -0.48 to -0.71; positive outcome indicated by a low score on the AFEQ and a high score on the VABS). The correlation between the parent domain score (items 1–13) and GHQ-12 total score was Spearman’s Rho = 0.408 (p < 0.001, n = 101; a

domain score (items 1–13) and GHQ-12 total score was Spearman’s Rho = 0.408 (p < 0.001, n = 101; a Spearman’s rank correlation was conducted as the GHQ-12 distribution was highly positively skewed). The association between the parent domain score and the WEMWBS total score at trial follow-up was r = -0.528 (p < 0.001, n = 103). The AFEQ therefore showed good con-vergent validity with well-established measures of child adaptive functioning, parental mental health, and parental well-being.

The psychometric evidence is based on a sam-ple of children with “core autism” aged 2–12 years. It is not yet known how the question-naire would work outside of these parameters.

**Clinical Uses** The AFEQ can be applied in a range of healthcare, child development, educational, or social care settings and developmental settings that support families of children with ASD and similar neurodevelopmental conditions. Its main use would be to make pre- and post-within-participant or within-group comparisons to evaluate the effect of an intervention on parent-nominated intervention priorities, family experience, and quality of life. At the time of publication, it was in use

priorities, family experience, and quality of life. At the time of publication, it was in use in this way by several clinicians/clinical teams internation-ally. The AFEQ could also be used to quantify the experience of families and to make between-family comparisons, in order to identify families who are having a particularly difficult experience and who could benefit from further support.

**See Also** *   Assessing Quality of Life in Autism *   Developmental Intervention Model  Autism Family Experience Questionnaire (AFEQ), The **Synonyms** Autism Spectrum Disorder (ASD); General Health Questionnaire (GHQ-12); Pre-school Autism Communication Therapy (PACT); Vineland Adaptive Behavior Scales (VABS); Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS)

**Description** The Autism Family Experience Questionnaire (AFEQ) is a measure developed to reflect the intervention priorities of parents of children with autism spectrum disorder (ASD), and to assess the impact of interventions on family experience and quality for life (The PACT Consortium et al. 2018).

The AFEQ consists of 48 items in the domains: (1) experience of being a parent of a child with autism; (2) family life, (3) child development (development, understanding, and social relationships); and (4) child symptoms (feelings and behavior) (The PACT Consortium et al. 2018). All items are scored on an order scale: 1 = always to 5 = never, with an option for “Not Applicable.”

**Historical Background** Quality of life has been widely studied; however, the research on quality of life for people with autism is scarce (Burgess and Gutstein 2007). The AFEQ was developed and tested within the large PACT intervention, Trial and Follow-Up (The PACT Consortium et al. 2018). The AFEQ is developed based on focus and online consultations with parents (The PACT Consortium et al. 2018).

In the focus group phase, 31 parents of pre-school or school-aged children with an autism diagnosis were recruited. The participants were recruited from both local clinical services and parent-support groups (The PACT Consortium et al. 2018). The participants attended one of five focus groups, convened and led by members of the PACT Principal Investigator team, and an independent qualitative researcher. The focus groups explored the specific parameters identified as the most important outcomes in

The focus groups explored the specific parameters identified as the most important outcomes in a pre-school communication intervention for parents. A qualitative analysis of the focus groups resulted in 78 questionnaire items. Thirty-five parents rated the 78 questionnaire for clarity and usefulness online.

Based on the online rating, revised question-naire with 56 items were applied with parents within the PACT trial. A further cleaning resulted in the 48-item questionnaire: the Autism Family Experience Questionnaire (AFEQ).

**Psychometric Data** To date there is only one study exploring the psychometric date of the AFEQ (The PACT Consortium et al. 2018). The scale reliability of the AFEQ was initially examined based on 140 participants based on Cronbach’s alpha for the domain scores and the total AFEQ score. All domains and the total score demonstrated excellent reliability: parent (alpha = 0.85), family (0.83), child development (0.81), child symptoms (0.79), and total AFEQ (0.92) (The PACT Consortium et al.

child development (0.81), child symptoms (0.79), and total AFEQ (0.92) (The PACT Consortium et al. 2018).

External criterion validity was explored for the child development domain against parental Vineland Adaptive Behavior Scales (VABS). The correlation were significant (r = -0.478 to -0.710, p <0.001) and indicating a moderate to strong association between AFEQ and VABS at three different time-points (The PACT Consortium et al. 2018). The external criterion validity of the parent domain of the AFEQ was assessed against GHQ-12 and WEMWBS at one time-point. The correlation between the parent domain

was assessed against GHQ-12 and WEMWBS at one time-point. The correlation between the parent domain score and GHQ-12 was Spearman’s Rho = 0.408 (p <0.001) and with the WEMWBS was r = -0.528 (p < 0.001).

**Clinical Uses** The AFEQ are used in the PACT 6-year follow-up study (Sigafoos and Waddington 2016) and may be used as described in the objective – to reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and to assess the impact of interventions on family expe-rience and quality for life.

**See Also** *   Assessing Quality of Life in Autism *   Parental Response to Diagnosis *   Quality of Life for Transition-Age Youth with ASD *   Social Validity *   Vineland III  Autism in Ecuador **Historical Background** As in other countries from the region, the field of mental health in Ecuador has been documented during pre-Columbian times, the colonial period, and the modern republics. Children and adults with autism spectrum disorder (ASD), especially those situated in the most severe

and adults with autism spectrum disorder (ASD), especially those situated in the most severe end of the spec-trum, may have received treatments available for individuals with atypical and challenging behav-iors long before ASD was recognized and named. Different treatments used for mental health con-ditions have been documented since pre-Columbian times, such as the use of hallucinogens (ayahuasca, bejuco), animals (chickens, guinea pigs), songs, and dances with mythical and reli-gious

bejuco), animals (chickens, guinea pigs), songs, and dances with mythical and reli-gious allusions (Naranjo 1983). In different parts of the country, it is still possible to observe prac-tices of shamanism or crusaderism, offered to individuals with mental health difficulties (Zuniga Carrasco and Riera Recalde 2018), or read billboards advertising the services particu-larly for children’s difficulties, mentioning autism among them. The first hospice and psychiatric asylum, Hospicio Jesus, María y

mentioning autism among them. The first hospice and psychiatric asylum, Hospicio Jesus, María y José, was founded under the initiative of the Catholic Church in 1785 in the city of Quito, then a colo-nial center of the Spanish Crown. Operating on a Western prison model, this center had a population of individuals suffering from mental health problems but also orphans and beggars (Landazuri 2008).

The birth of psychology in Ecuadorian aca-demic circles is situated toward the end of the nineteenth century. The first chair of psychology was given in 1897 on subjects relating to hypno-tism and suggestion by professors of general med-icine. The lessons were addressed to teachers trained in philosophy and pedagogy, although the biological paradigm appeared to dominate. The first experimental studies took place shortly after, affirming psychology as a scientific area. The creation of various

studies took place shortly after, affirming psychology as a scientific area. The creation of various chairs of psychiatry in different cities succeeded until 1926, influenced by the conference “Psychology and Pedagogy,” dictated at the first Ecuadorian Congress of Med-icine in 1919 (Zuniga Carrasco and Riera Recalde 2018). By 2007, a total of 17 faculties of psychol-ogy had been created in different Ecuadorian uni-versities. One of the most important, the Faculty of Psychological Sciences of the

Ecuadorian uni-versities. One of the most important, the Faculty of Psychological Sciences of the Central Univer-sity of Ecuador, in Quito, was created in 1972 as a single school, covering four specializations: clin-ical psychology, special education and psycho-rehabilitation, industrial psychology, and legal psychology.

The first identifications of autism cases likely took place in the 1980s, in the context of psychi-atric public and private professional practices, following official recognition of autism by the Diagnostic and Statistical Manual of Mental Disorders, third edition (DSM-III), in 1980 and under the influence of European or North Ameri-can textbooks that university libraries possessed at that time. From the treatment point of view, psychotherapies and psychopharmacology, such as insulin shock

From the treatment point of view, psychotherapies and psychopharmacology, such as insulin shock therapy, were used for schizo-phrenia and related disorders from the 1950s (Aguilar 2013). In the 1960s, nongovernmental institutions were created in order to provide care for individuals with mental health conditions. The first organizations created with this purpose were religious, such as the Order of the Sisters of the Hospital, whose work was based on an agreement with the Ministry of Social

of the Sisters of the Hospital, whose work was based on an agreement with the Ministry of Social Protection and Labor. Other nonprofit and for-profit laic foundations, set up to meet the needs of adults and children with different types of health problems, appear in the following years. The first private centers intending to provide specific assistance to chil-dren with autism, by separating them from chil-dren with intellectual disabilities, appeared in the late 1980s (Aguirre et al. 2017 cited in

chil-dren with intellectual disabilities, appeared in the late 1980s (Aguirre et al. 2017 cited in Zuniga Carrasco and Riera Recalde 2018).

Currently, it is not possible to identify any specific programs for autism in the registers of public health agencies in Ecuador. The Ministry of Health published the first Guide for Clinical Practice: Diagnosis, Treatment, Rehabilitation, and Case Management in 2017. The Ecuadorian health system is based on public and private prac-tices. The public system comprises two subsys-tems, hospitals, and state social security system institutions, on the one hand, and institutions dependent on the

and state social security system institutions, on the one hand, and institutions dependent on the Ministry of Health, on the other. Two major pediatric hospitals, Hospital Baca Ortiz in Quito and Hospital Dr. Francisco de Icaza Bustamante in Guayaquil, depend on the Ministry of Health and provide general and spe-cialized services. There are also private entities which operate in the public sector, such as the Welfare Board of Guayaquil (Hospital Dr. Robert Gilbert E. Guayaquil), the Child

such as the Welfare Board of Guayaquil (Hospital Dr. Robert Gilbert E. Guayaquil), the Child Pro-tection Association of Guayaquil, and the Ecua-dorian Red Cross. Public services are funded from the general state budget, extra-budgetary funds, and funds from national and international projects and agreements. Private services are funded by selling health-care services to the public sector; by private health insurers, mainly for the middle- and high-income population (Pan American Health

by private health insurers, mainly for the middle- and high-income population (Pan American Health Organization 2017); and by the families themselves. Services for people with autism are offered by pediatricians, neuro-pediatricians, psy-chiatrists, clinical psychologists, and educators, as well as speech and language therapists and occu-pational therapists, working in public or private centers and private practices but also in nonprofit foundations which are mainly located in the cities.

As it has been the case in other countries, parents’ associations have contributed signifi-cantly to obtain recognition of ASD through pub-lic conferences and free-of-charge training to parents and teachers. In Quito, a group of parents met in 2012 to ask for official recognition of autism as a handicap. Parents obtained access to a Disability Card (Carnet de Discapacidad) from the National Parliament, which allows individuals with autism to certain rights. In March 2013, those parents united

which allows individuals with autism to certain rights. In March 2013, those parents united into an association, APADA, aiming to contribute to the development of awareness programs and to work together with the Ministry of Education and the Ministry of Labor on special education plans. This association has also contributed to the development of the National Agenda for Equality in Disabilities 2017–2021, aiming to support the autonomy and productivity of people with disabilities. This agenda

2017–2021, aiming to support the autonomy and productivity of people with disabilities. This agenda also examines how “to define a national instrument for the diagnosis of the Autism Spec-trum” and “to implement the screening and diag-nosis of the Autism Spectrum in the national territory” (National Council for Equality in Disabilities 2017, p. 54–55). Together with nine other parent associations, Guayaquil (3), Quito (1), Cuenca (1), Machala (1), Santo Domingo (1), Ibarra (1), Los Ríos (1), and

Guayaquil (3), Quito (1), Cuenca (1), Machala (1), Santo Domingo (1), Ibarra (1), Los Ríos (1), and Loja (1), it has formed the “Ecuadorian Federation of Autism Spectrum” (Organizaciones de Autismo buscan 2017). Their objective is to protect the well-being of individuals with ASD and their families, promote public policies, and support the work of other organizations. Other parents’ associations are currently being organized in different cities across the country.

**Legal Issues, Mandates for Services** Ecuador is a member of the International Conven-tion on the Rights of the Child (The United Nations 1989), which recognizes and protects access to health and education services, and was the 20th state to ratify the Convention on the Rights of Persons with Disabilities (The United Nations 2006) and its optional protocol that entered into force in 2008. The Ecuadorian State has transposed and clarified those rights in its national legislation. The Law on

Ecuadorian State has transposed and clarified those rights in its national legislation. The Law on Disabilities (LOD) of the National Health System (National Assembly of the Republic of Ecuador 2012) guar-antees the rights of people with ASD to free access to medicines and equipment, technical and technological aids, adaptations of study plans, and permanent accompaniment of guides (LOD, art. 33). Other benefits, such as financing con-struction or remodeling housing and a reduction of 50% in the

Other benefits, such as financing con-struction or remodeling housing and a reduction of 50% in the services of water and electricity, are considered by this law. In the field of education, an agreement intends to guarantee the access of individuals with special needs to special educa-tion (Ministerio de Educación 2013). In order to be eligible, individuals with ASD must request the Disability Card. Potential beneficiaries need to justify that they are suffering from a “non-evident and non-visible

Potential beneficiaries need to justify that they are suffering from a “non-evident and non-visible disability.” They also need to present a report from a medical practitioner or a specialist and the results of additional examina-tions, which may only be issued by the units of the Complementary and Integral Public Health Net (Ministry of Health n.d.). Autism is defined in this context as a “catastrophic disease,” namely, a pathology or chronic disease which poses a grave risk to the life of the

disease,” namely, a pathology or chronic disease which poses a grave risk to the life of the person. Their treatment has a high economic cost and social impact, and, being of a prolonged or permanent nature, they must be part of long-term health plan and gener-ally have little or no insurance coverage (Ministry of Health 2012a). In the particular case of individ-uals in this situation who are living in critical socioeconomic circumstances, this ministerial agreement contemplates the allocation

in critical socioeconomic circumstances, this ministerial agreement contemplates the allocation of a monthly voucher of 240 USD under certain con-ditions. As described, an important legal frame-work intending to support the development of individuals with ASD exists in Ecuador. How-ever, some critical gaps in terms of training and access to information on good practices exist, hindering the implementation of rules and policies (Educación Inclusiva en Ecuador hay ley 2019).

**Overview of Current Treatments and Centers** Many different treatments are offered in public and private centers, as well as in private practices. They include a considerable variety of methods, such as Floortime, Tomatis, hippotherapy, and others, sometimes not specified. Speech therapies, sensory therapies, and cognitive-behavioral therapies are also commonly offered. Specific evidence-based treatment services are still scarce. To date, two professionals are registered within the Behavior

treatment services are still scarce. To date, two professionals are registered within the Behavior Analyst Certification Board as BCBAs, one in Quito and one in Guayaquil. Only one professional, in Quito, is currently reg-istered on the official list of certified therapists of the ESDM model. TEACCH strategies and alter-native/complementary systems of communication are also used within a variety of settings. Drug treatments, generally intended for comorbidities, are prescribed by pediatricians,

settings. Drug treatments, generally intended for comorbidities, are prescribed by pediatricians, neuro-pediatricians, and psychiatrists. The annex num-ber ten of the Guide for Clinical Practice: Diag-nosis, Treatment, Rehabilitation, and Case Management (Health Minister 2017) provides a list of medication endorsed by this document.

**Overview of Research Directions** The document “Priority research areas 2013–2017” from the Ministry of Health defines a certain number of fields that had been chosen according to a list of health problems identified in official registers. Mental health issues are the 11th among 19 categories, in which autism and Asperger’s are considered (Ministry of Healths 2012b). However, current research literature indi-cates that areas related to ASD have been under-explored and studies on prevalence at a

indi-cates that areas related to ASD have been under-explored and studies on prevalence at a national level have not yet been conducted. According to the Guide for Clinical Practice (Ministry of Health 2017), ASD prevalence in a child population of 5 years old or less was estimated to be 0.28% (0.18–0.41%) in 2015. According to data pro-vided by the National Directorate of Disabilities of the Ministry of Health, in 2016, 1,266 people diagnosed with ASD were reported. Of these, 254 cases have

of Health, in 2016, 1,266 people diagnosed with ASD were reported. Of these, 254 cases have been registered with a diagnosis of atypical autism, 792 with a diagnosis of child-hood autism, 205 with Asperger syndrome, and 15 with Rett syndrome (as cited in Ministry of Health 2017, p. 11). The reasons why estimates of ASD prevalence in Ecuador are remarkably lower than those reported in Western countries remain unclear. As preliminary evidence, a study aiming to estimate school attendance of

countries remain unclear. As preliminary evidence, a study aiming to estimate school attendance of children with an ASD diagnosis in the city of Quito found a pro-portion of 0.11% among 453 pupils in 161 in regular schools, assessed through interviews with school directors (Dekkers et al. 2015).

Preliminary research on the field of assistive technology has also been conducted in different universities. The research group in Artificial Intel-ligence and Assistive Technology of Salesian Polytechnic University of Ecuador (https://www. ups.edu.ec/giiata) has carried out a pilot project aiming to explore the functionality of a mobile tool and a robotic assistant for the diagnosis and intervention of children with ASDs (Galán-Mena et al. 2016, June). A project intending to develop an

of children with ASDs (Galán-Mena et al. 2016, June). A project intending to develop an application to support verbal communication and personal autonomy in children and young people has been carried out at the Universidad de las Fuerzas Armadas ESPE (Cárdenas et al. 2015, October).

A research project aiming to identify potential barriers to diagnosis in pediatric environments has been conducted in cooperation with the School of Pediatrics of the Faculty of Medicine at the Cath-olic University of Quito, the Faculty of Psychol-ogy at the University of Geneva, and the AJ Drexel Autism Institute in Philadelphia, with the endorsement of the Ecuadorian Society of Pediat-rics (ESP). The results suggest that, as in many other countries, the pediatric community in Ecua-dor may be

The results suggest that, as in many other countries, the pediatric community in Ecua-dor may be facing obstacles in terms of time for screening, training, and resources adapted to their clinical practices. The results also point to a low number of autism cases identified during the pro-fessional life of the participants (Buffle et al. 2019). An additional study, aiming to examine the pediatric community’s perception on screening procedures and tools, suggests a preference for observational

community’s perception on screening procedures and tools, suggests a preference for observational procedures, over paper parent-administered questionnaires, as well as a clear interest among professionals in acquiring knowl-edge and expertise on the identification of early signs (Buffle and Gentaz 2019). A pilot project aiming to study the visual social attention with an eye-tracking is currently being conducted in neurotypical preschool age children in Quito. Eye-tracking measures are

being conducted in neurotypical preschool age children in Quito. Eye-tracking measures are increasingly proposed as sensitive biomarkers for ASD, particularly con-venient to assess the core social attention deficits contributing to ASD. Remote eye gaze tracking is a noninvasive technique not requiring participants’ overt responses and has not significant technical or ethical limitations (Frazier et al. 2018). Further-more, measures can be rapidly collected across a wide range of ages and probably

al. 2018). Further-more, measures can be rapidly collected across a wide range of ages and probably in different cul-tural settings. The present study aims to explore the adaptability of this technique and procedures to an Ecuadorian context (www.unige.ch/fapse/babylab/ le-babylab/equipe/projet-en-equateur).

An overview of digital repositories from dif-ferent universities in Ecuador shows an increasing interest among young bachelors in psychology and pedagogy in fields related to intervention in children with ASD, suggesting a potential for the development of new lines of research. An impor-tant research priority is the understanding of the cultural fit and adaptations required to implement evidence-based practices originating from the West (Vivanti 2019).

**Overview of Training** Ecuadorian universities currently offer postgrad-uate studies in pediatrics and neurology. The spe-cialization in neuro-pediatrics is not presently available, and this field relies on professionals trained in other countries who return to work in Ecuador. Currently, a training module for pedia-tricians and pediatric interns on ASD evidence-based practices is being developed in cooperation with the Department of Pediatrics of the Faculty of Medicine of the Catholic

in cooperation with the Department of Pediatrics of the Faculty of Medicine of the Catholic University of Quito (www.unige.ch/fapse/babylab/le-babylab/equipe/ projet-en-equateur).

Aiming to facilitate the dissemination of scien-tific research in the field of ASD, the ESP included a session on “Validated screening tools in Spanish and their importance for a diagnostic process” during the 19th Ecuadorian Pediatric Congress in 2017. The newly created Ecuadorian Society of Neuropediatrics, supporting continuous educa-tion on early detection, included a session on “The challenges to diagnostic faced in pediatric settings and validated methods of intervention,” during the First

to diagnostic faced in pediatric settings and validated methods of intervention,” during the First Ecuadorian Neuropediatric Congress in 2019. The ESP has also supported in February 2018 the organization of workshops intended for service providers on an evidence-based early intervention model in Quito, in collaboration with trainers certified from the UC Davis MIND Institute.

Education intended to service providers, such as speech therapists, psychologists, and occupa-tional therapists, is primarily offered as a bache-lor’s degree at many official universities across the country. Training on specific topics has been provided within universities, such as an introduc-tory module on ASD evidence-based practices addressed to students on special education of the Faculty of Education within the Universidad de las Américas in 2018. Several universities in major cities hold

Education within the Universidad de las Américas in 2018. Several universities in major cities hold ad hoc conferences on ASD from a variety of theoretical backgrounds. Free-of-cost conferences organized by different par-ents’ associations try to raise awareness among the general public and particularly among teachers.

**Social Policy and Current Controversies** Current controversies include the terminology used for the diagnostic of ASD. Ecuador’s public system mainly relies on the World Health Organi-zation’s International Classification of Diseases (ICD-10) (WHO 1993), one of the two official diagnostic systems. As ICD-10, which has con-served the traditional three categories dating back to Rutter’s (1978) criteria, coexists with the autism spectrum disorder’s description of the Diagnostic and Statistical

coexists with the autism spectrum disorder’s description of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (American Psychiatric Asso-ciation 2013), confusion about the diagnostic is common among parents and individuals with ASD. Furthermore, some families strongly iden-tify to their child’s diagnosis of Asperger syn-drome, perceived as less stigmatizing and more descriptive of milder conditions. For this reason, some professionals and parents oppose the disappearing of

of milder conditions. For this reason, some professionals and parents oppose the disappearing of Asperger’s diagnosis (APADA, personal communication, December 2, 2019). Adapted and validated treatments are another important source of controversy. Media has become an authoritative source for families, and it is quite common to observe parents requesting advice and recommendations through this chan-nel. Furthermore, a miscellaneous offer of ser-vices, particularly for children, with sound,

chan-nel. Furthermore, a miscellaneous offer of ser-vices, particularly for children, with sound, little, or no evidence, is advertised through the Internet. Some parents’ associations, mainly based in Spain, provide information on good practices and are becoming well known among family cir-cles in Ecuador (e.g., Autismo Diario). However, information about treatments that have little or no evidence (i.e., “Beware of non-evidence-based treatments,” 2019) are still scarce in Spanish. This

evidence (i.e., “Beware of non-evidence-based treatments,” 2019) are still scarce in Spanish. This situation highlights the importance of mak-ing knowledge easily accessible for all families, independently of their socioeconomic status or level of education, in order to facilitate informed decisions.

Many other areas of controversy can be iden-tified, such as the profile of professionals qualified to give a diagnosis and to carry out interventions. For the time being, multidisciplinary teams do not seem to be constituted at the public level. In private sectors, a common source of concern for families is related to situations where the profes-sional giving a diagnosis of ASD also carries out an intervention with a method that is familiar to the professional but does not correspond to an

an intervention with a method that is familiar to the professional but does not correspond to an individual’s need, thus excluding other models or strategies of intervention that could be more suitable. Also, in the field of services, the impact of very short-term trainings open to the public and certifications on methods of evaluation and inter-vention that have significant variability in terms of duration, theoretical background, evidence, and professional supervision need to be studied.

Finally, an important concern for families relates to the lack of visibility given to the needs of adults on the spectrum, especially in the cases when the level of functioning compromises autonomy. Those themes illustrate that an absolute priority must be to provide families an access to knowl-edge on good practices that enable informed deci-sions on the assessment, intervention, and support processes at each stage of their children’s devel-opment. Attitudes toward individuals with ASD are

processes at each stage of their children’s devel-opment. Attitudes toward individuals with ASD are changing as society becomes more aware of needs. Initiatives are no longer taken only by parents’ associations but also by civil society, as suggested by the organization of a discussion forum on the social integration of individuals with ASD, by an Ecuadorian NGO traditionally interested in sustainable development (Territorios Sostenibles, October 2019). The needs and con-straints of individuals

development (Territorios Sostenibles, October 2019). The needs and con-straints of individuals with ASD may be more visible nowadays. However, awareness among the general population specifically about symp-toms’ manifestation may still be frail. Indeed, early identification of young children requires families’ participation in the decision process that leads to professional assistance. This process may not take place if autistic behaviors do not raise a certain level of concern among parents and

may not take place if autistic behaviors do not raise a certain level of concern among parents and professionals or if those behaviors are not understood as signs of a potential developmental disorder. In Ecuador, a study conducted on 183 adults concluded that most participants did not endorse many socio-communicative core symptoms as concerning enough to require pro-fessional assistance. Only language impairment and self-injurious behaviors attracted attention as concerning behaviors in young

impairment and self-injurious behaviors attracted attention as concerning behaviors in young children by more than half of the respondents. On the other hand, most of the participants attributed the causes of autistic behaviors to factors unrelated to ASD or neurodevelopmental difficulties, such as child personality (Buffle et al. 2020). Those results suggest that “red flags” may not be recognized by families and non-trained professionals, which may lead to missing critical developmental

by families and non-trained professionals, which may lead to missing critical developmental oppor-tunities. It also suggests that a substantial number of cases may remain invisible, preventing the estimation of individuals needing services in Ecuador.

Autism in Higher Education: Access, Challenges, and Support Strategies **Background** The Interagency Autism Coordinating Committee identified the development of services to support transition to adulthood as its first objective within the domain of lifespan research (IACC 2019). Around 50,000 adolescents with autism spectrum disorder (ASD) enter adulthood each year (Shattuck et al. 2012), many of whom have both an interest in higher education and the intellectual capacity to succeed

many of whom have both an interest in higher education and the intellectual capacity to succeed academically. The develop-mental period bridging adolescence to adulthood is when multiple essential milestones are gener-ally achieved, including increased independence, autonomy, and responsibility (Arnett 2000). Unfortunately, many youths with ASD either fail to meet typical adult developmental milestones or decline in functioning during late adolescence (Picci and Scherf 2014).

Young adults with ASD often experience lower quality of life than do age- and cognitive ability-matched healthy adults (Bishop-Fitzpatrick et al. 2017). They also face sustained challenges with living independently (Flynn and Healy 2012; Steinhausen et al. 2016) and finding and keeping gainful employment (Engstrom et al. 2003). One pathway to independence in adulthood and finan-cial mobility is through higher education. Based on data from the Bureau of Labor Statistics, edu-cation predicts

is through higher education. Based on data from the Bureau of Labor Statistics, edu-cation predicts income and people who obtain bachelor’s degrees, on average, earn more than those with just a high school diploma (BLS; Torpey 2018). As such, understanding how soci-ety, and especially those in mental health and higher education, can best support the needs of college-enrolled and college-bound people with ASD is important.

**Transition from High School to College** Federal policies such as the No Child Left Behind Act of 2001 and the Individuals with Disabilities Education Improvement Act have greatly improved educational outcomes for students with ASD in elementary and secondary education (Smith 2005). But while these policy changes have provided more opportunity for students with ASD to pursue a college education, this is not necessarily a smooth or successful transition. Transitioning into college can be both

this is not necessarily a smooth or successful transition. Transitioning into college can be both thrilling and difficult for anyone (Shea 2019), but a grow-ing body of research indicates that emerging adults with ASD face unique challenges that can impede access to higher education. Adolescents and emerging adults with ASD often exhibit underdeveloped independence, lagging interper-sonal skills, and impaired ability to manage stress (Elias et al. 2019; Elias and White 2018). Partly because of

and impaired ability to manage stress (Elias et al. 2019; Elias and White 2018). Partly because of these factors, it is estimated that only 50% of young adults with ASD pursue a college degree (Taylor and Seltzer 2011), a rate that is lower than the U.S. average college enrollment rate of 70% (U.S. Dept. of Health and Human Services 2017). Prior research also indicates that college students feel more supported academi-cally than socially (Cai and Richdale 2016), a trend which can lead colleges

more supported academi-cally than socially (Cai and Richdale 2016), a trend which can lead colleges to overlook the social deficits inherent to ASD. However, despite these factors, colleges are still seeing a nationwide increase in applications from students with ASD, and more and more high school students with ASD decide to pursue postsecondary education every year (CITE).

**Different College Pathways** Once an adult with ASD decides to go to college, several choices await them. The student must decide on a major, a living arrangement, and indeed the type of college or university they will apply to. These choices are important for all stu-dents to consider, especially so for students with ASD. There are multiple different pathways an adolescent with ASD could take, including attending vocational high school, studying at a community college, or pursuing a 4-year

including attending vocational high school, studying at a community college, or pursuing a 4-year degree.

Firstly, where do students with ASD attend? Many students with ASD enroll in community colleges and local institutions. One study reported that around 80% of postsecondary students with ASD were in a community college for at least part of their education (Wei et al. 2014). Some pro-fessionals have recommended this pattern as ben-eficial for students with ASD. For example, according to Adreon and Durocher (2007), Lars Perner (2002) suggested that the increased per-sonal attention found in

and Durocher (2007), Lars Perner (2002) suggested that the increased per-sonal attention found in community colleges can help a student with ASD adjust to the routines and responsibilities of college. Conversely, large uni-versities provide far less opportunity to receive individualized attention, especially in large clas-ses (Freedman 2010). It may also be worth con-sidering what sort of programs colleges have to offer students with disabilities; for example, Shmulsky et al. (2015)

of programs colleges have to offer students with disabilities; for example, Shmulsky et al. (2015) demonstrated that partici-pation in a holistic transition program resulted in students with ASD having a higher first-year com-pletion rate than unsupported typically develop-ing students.

Secondly, what majors do students with ASD choose? Research on this topic is minimal, but studies on the majors chosen by students with ASD suggest that STEM majors are the most commonly chosen areas of study (Baron-Cohen et al. 2007; Fessenden 2013; Wei et al. 2013). In particular, computer science seems to be a popular area of study for these students (Wei et al. 2013). Further research is needed to better understand what students with ASD are interested in study-ing, so as to better-inform

to better understand what students with ASD are interested in study-ing, so as to better-inform program administrators.

Finally, where do students with ASD choose to live? Some students commute while others live in campus housing. Students with ASD may choose to commute for several reasons. It may be due to family finances and commuting can prevent a family from being charged a housing fee by the college or university (Buescher et al. 2014; Shimabukuro et al. 2008; Wei et al. 2014). It may also be due to personal factors such as defi-cits in independent living skills (Elias and White 2018; Steinhausen et al.

factors such as defi-cits in independent living skills (Elias and White 2018; Steinhausen et al. 2016; Van Hees et al. 2015). Conversely, if the student decides to live in campus housing, they may have a roommate. Studies have shown that certain factors in room-mates, such as aloofness (preference of solitary activity and decreased social involvement) can play a key role in fostering good relationships with students with ASD, with phenotypes closer to the autism phenotype resulting in higher

with students with ASD, with phenotypes closer to the autism phenotype resulting in higher rela-tionship satisfaction from both roommates (Faso et al. 2016).

**Strengths of College Students with ASD** Students with ASD typically bring a variety of strengths with them to college. The prevalence of special abilities and talents among those with ASD has long been recognized (Asperger 1944; Kanner 1943). Around two-thirds of individuals with ASD are thought to possess special isolated skills (Meilleur et al. 2015) which can be harnessed for success in higher education. Atten-tion to detail, strong memory, adherence to rules and guidelines, passionate

education. Atten-tion to detail, strong memory, adherence to rules and guidelines, passionate interests, and intense knowledge of a particular subject area are com-monly noted strengths of these students (Anderson et al. 2017; Gobbo and Shmulsky 2014), as well as openness to feedback and sug-gestions (Elias et al. 2019). Other strengths which may prove useful in higher education include enhanced perceptual functioning (Mottron et al. 2006), superior pitch discrimination (Heaton et al. 2008),

perceptual functioning (Mottron et al. 2006), superior pitch discrimination (Heaton et al. 2008), hyperlexia (Ostrolenk et al. 2017), mathe-matical/calculating skills (Howlin et al. 2009), as well as musical, artistic, and other abilities (Meilleur et al. 2015).

Previous research suggests individuals with ASD tend to do particularly well in STEM areas of study. These students often have a cognitive style that lends itself particularly well to STEM fields: an ability to observe, identify, construct, and apply logical rule-based systems of reasoning to explain the world around them (Cox et al. 2016), i.e., “systemizing” (Baron-Cohen 2009). It has even been suggested that those with ASD may have an innate predisposition for STEM with higher autism rates

suggested that those with ASD may have an innate predisposition for STEM with higher autism rates among children whose parents work in STEM fields (Baron-Cohen 1998; Baron-Cohen and Hammer 1997). Students with ASD may approach problems in science and engineer-ing in unique ways, develop novel and divergent solutions, and show strength, resilience, and determination (Baron-Cohen 2009). Interestingly, students with ASD who pursue STEM fields tend to progress further in their education and are more

students with ASD who pursue STEM fields tend to progress further in their education and are more likely to finish all 4 years or transfer from a com-munity college into a 4-year college or university (Wei et al. 2014). As previously mentioned, col-lege students with ASD are more likely than stu-dents in other disability categories, and students in general, to gravitate towards STEM fields, and the efforts of these students are a credit to their fields.

**Challenges Experienced by College Students with ASD** Emerging adults with ASD may experience sig-nificant difficulties during their college career. Social interactions, organization and time man-agement, managing anxiety and depression, maintaining motivation, and sensory overload have all been noted as areas of both frequent and severe difficulty for many students with ASD (Alverson et al. 2015; Trembath et al. 2012; White et al. 2016). Loneliness and isolation are common problems for college

Trembath et al. 2012; White et al. 2016). Loneliness and isolation are common problems for college students with ASD (Madriaga and Goodley 2010). Knowing where to meet other students with similar interests, initiat-ing and maintaining conversations with class-mates, and findings ways to connect with other students can all be challenging. Other common situations such as group projects, maintaining appropriate classroom behavior, and in-class debates all demand complex social skills which students

classroom behavior, and in-class debates all demand complex social skills which students with ASD may not have (Cullen 2015). By the students’ own admissions, these social needs often go under-supported (Cai and Richdale 2016).

Furthermore, the college environment is dra-matically different from high school, particularly concerning changes in schedule and routine, self-autonomy, and the need for self-advocacy skills (Van Hees et al. 2015). Living on campus also may require negotiating with roommates and independently managing a range of personal responsibilities such as doing laundry, cleaning, self-care, and handling mealtimes. High schools often have a somewhat invisible support system where teachers, staff, and

mealtimes. High schools often have a somewhat invisible support system where teachers, staff, and classmates know and understand the student with ASD. Particularly on a large campus, these invisible supports are diffi-cult to replicate in a college environment.

**Disclosure of ASD Diagnosis** An additional challenge for students with ASD in college is the issue of disclosure. Many students with a diagnosis of ASD choose not to disclose (Van Hees et al. 2015) for a variety of reasons, which may include relation to self-identity, expected benefits from disclosing, and previous experiences with disclosure. Many college stu-dents with disabilities may want to eliminate the label of being disabled to reset their social identity (Marshak et al. 2010). Data

to eliminate the label of being disabled to reset their social identity (Marshak et al. 2010). Data from the National Longitudinal Transition Study-2 indicated that around 33% of students with ASD did identify as “disabled” (Shattuck et al. 2014). The colleges themselves may not do an adequate job of provid-ing information to incoming students about the services and supports which may be available to them and how to navigate the disability services system.

Further complicating the situation, disclosure does not guarantee assistance. One study of dis-closing students attending 2-year colleges found that less than half reported receiving any ser-vices or accommodations (Roux et al. 2015). Others have reported reluctance to disclose their ASD diagnosis until they encounter a sig-nificant problem or are unable to cope (e.g., Gobbo and Shmulsky 2014; Van Hees et al. 2015). Finally, unlike in high school, in college it is the student’s responsibility

Hees et al. 2015). Finally, unlike in high school, in college it is the student’s responsibility to take initiative and seek help. Students with ASD, who may have depended upon parents and teachers to set goals (Elias et al. 2019), may fail to access these resources simply because they are not used to doing so.

**Attitudes Towards College Students with ASD** Attitudes among students, faculty, staff towards students with ASD are another area of concern. Research has shown a significant lack of knowl-edge and understanding of ASD among faculty and staff (Glennon 2016; Tipton and Blacher 2014), leading to frustration among faculty and inaccurate interpretations of inappropriate class-room behavior. These and other misconceptions about autism have led to stigmatization and exclu-sion of these students

and other misconceptions about autism have led to stigmatization and exclu-sion of these students (Gillespie-Lynch et al. 2015; Gobbo and Shmulsky 2014; Schindler et al. 2015; Wenzel and Brown 2014).

What about students? Student responses vary and seem influenced by major and previous expe-rience. Students often distance themselves from students with ASD (Gardiner and Iarocci 2014) but those more familiar with autism seem to be more accepting (Nevill and White 2011). Students studying engineering and physical sciences have been shown to be more willing to interact with a student with ASD compared to those majoring in arts and social sciences (Nevill and White 2011). Inclusion in training

to those majoring in arts and social sciences (Nevill and White 2011). Inclusion in training programs presenting infor-mation about ASD has been shown to increase knowledge and decrease stigma among college students (Gillespie-Lynch et al. 2015), since understanding motivation for behavior can help reduce stigma (Butler and Gillis 2011). However, studies by both Gillespie and colleagues and by Matthews et al. (2015) found that training has a greater impact on behavior and cognitive attitudes

Matthews et al. (2015) found that training has a greater impact on behavior and cognitive attitudes towards individuals with ASD and less impact on the affect experienced by these trained students.

Related to this work, White et al. (2019) exam-ined student knowledge and attitudes towards other college students with ASD, the underlying factors contributing to such attitudes, and whether attitudes changed over a 5-year period. While the later cohort had greater knowledge and more pos-itive attitudes towards students with ASD, there was no significant relationship between knowl-edge and attitudes. Even after being presented with an accurate list of traits that might be seen in a student

Even after being presented with an accurate list of traits that might be seen in a student with ASD, students who had previ-ously identified a higher number of aggressive or misleading traits still demonstrated less positive attitudes – their own beliefs still trumped new factual knowledge. These findings imply that despite increasing knowledge and understanding of ASDs in society, negative attitudes remain resistant to change.

Students who personally knew someone with ASD had more positive attitudes toward their peers with ASD, consistent with other research in this area (Gillespie-Lynch et al. 2015; Nevill and White 2011). Students who did not know someone with ASD were more likely to endorse inaccurate traits related to cognitive deficits, per-haps reflective of stereotypes about disability more broadly, which are often perpetuated by a lack of contact. The conclusion that knowledge about ASD does not necessarily

perpetuated by a lack of contact. The conclusion that knowledge about ASD does not necessarily mediate attitudes toward peers with ASD is consistent with much of the research on attitudes toward members of minority populations, including those with dis-abilities and mental health issues (Allport 1954; May 2012; McManus et al. 2011).

**Strategies to Support College Students with ASD** With all of this in mind, how can we best support students with ASD? Given the potential for suc-cess among college students with ASD, formulat-ing effective support strategies is a priority for an increasing number of higher education institu-tions. Existing supports available through univer-sity counseling centers and learning and academic support services including tutoring and advising are often helpful. Disability services offices also

support services including tutoring and advising are often helpful. Disability services offices also play an important role in setting up academic accommodations which, depending on a student’s disabilities and eligibilities, might include extended time for exams, having a note-taker dur-ing class, or taking verbal exams (Egan and Giuliano 2009). However, barriers to accessing accommodations are multilayered, beginning with concerns of disclosure, as outlined above. There is a clear need to

multilayered, beginning with concerns of disclosure, as outlined above. There is a clear need to identify cost-effective programming that can be implemented with effi-cacy and which improve retention and success for students with ASD (Barnhill 2016).

**Supports for Social Skills** As stated previously, college students with ASD often state that they are not receiving adequate social or educational support in this new setting (Cai and Richdale 2016). Students themselves seem willing to attend support groups where they can meet other students with an ASD diagnosis (Van Hees et al. 2015), although colleges offering such groups have reported concerns that students were not receptive to the group, did not show up at the expected time, or that

that students were not receptive to the group, did not show up at the expected time, or that breaking down social skills was not helpful (Barnhill 2016). While an increasing number of institutions are developing tailored support groups, mentoring programs, and special tutoring, empirical support for many of these activities is minimal (Gelbar et al. 2014), and it is not yet clearly understood what supports are most helpful for students with ASD (Cox et al. 2016). It is clear, however, that

what supports are most helpful for students with ASD (Cox et al. 2016). It is clear, however, that support for social difficulties is critical (White et al. 2016) and likely has major implications for retention and success.

In part to address these problems, Hillier et al. (2018a) provided a support group program, “Con-nections,” for college students with ASD which had a broad curriculum addressing not only social skills but a range of other potential challenges including academic skills, time and stress man-agement, managing group work, and future plans. Group members indicated significant reductions in loneliness and anxiety and increase in self-esteem at the end of the program. Focus groups were conducted to

and anxiety and increase in self-esteem at the end of the program. Focus groups were conducted to examine functional changes in academic and social skills, and to hear directly from students themselves, a notable gap in the literature focused on students with ASD (Cox et al. 2016; Gelbar et al. 2014). Five prominent themes were identified in the focus group analysis which reflected how the program had positively impacted participants’ skills and coping: execu-tive functioning; goal setting;

had positively impacted participants’ skills and coping: execu-tive functioning; goal setting; academics and resources; stress and anxiety; and social. Given that college students typically make their own decisions regarding interventions and services they are willing to receive, the program’s social validity was also assessed and participants indi-cated that the group was acceptable, socially rel-evant, and useful to them.

**Mentoring Programs** Mentoring is a well-established strategy for improving outcomes for a broad range of populations: at-risk youth (Britner et al. 2006), fos-ter children (Rhodes et al. 1999), workplace men-torship (Janssen et al. 2015), and individuals with disabilities (Daughtry et al. 2009). Increasing atten-tion has been paid to the possibility of implementing mentoring programs in higher education institutions for students with ASD. While many factors affect a program’s success

higher education institutions for students with ASD. While many factors affect a program’s success (Rhodes and DuBois 2008), a meta-analysis of 73 youth mentoring studies identi-fied “best practices” including ongoing training for mentors, recruiting mentors with a background in helping roles or professions, structured activities for mentors and youth, expectations for frequency of contact, mechanisms for support and involvement of parents, and monitoring of overall program implementation

mechanisms for support and involvement of parents, and monitoring of overall program implementation (DuBois et al. 2011).

Hillier et al. (2019a) reported on a mentoring program for college students with disabilities, the majority of whom had an ASD diagnosis. The program supported freshmen for one semester and consisted of one-on-one hour-

Panel of Professional Advisors sets the standards for their Options Policy that governs the organization’s programs. The Autism Society’s Advisory Panel of People on the Spectrum of Autism is a first-of-its-kind advisory panel comprised solely of individuals with autism, who help Autism Society staff create programs and services that will advocate for the rights of all people with autism to live fulfilling, interdependent lives. The membership base of the Autism Society encompasses a broad and

fulfilling, interdependent lives. The membership base of the Autism Society encompasses a broad and diverse group of parents, family members, special education teachers, administrators, medical doctors, therapists, adult agency personnel, nurses, and aides, as well as countless other personnel involved in the education, care, treatment, and support of individuals on the autism spectrum across the age span. Recognizing and respecting the diverse range of opinions, needs, and desires of this

the age span. Recognizing and respecting the diverse range of opinions, needs, and desires of this group, the Autism Society embraces an overall philosophy that chooses to empower individuals with autism and their parents or caregivers to make choices best suited to the needs of the person with autism, a policy it calls the Options Policy. All activities of the Autism Society are guided by the Options Policy. Revisited on a regular basis by the organization, the Options Policy has stood the

Options Policy. Revisited on a regular basis by the organization, the Options Policy has stood the test of time. It states that: The Autism Society promotes the active and informed involvement of family members and the individual with autism in the planning of individualized, appropriate services and supports. The Board of the Autism Society believes that each person with autism is a unique individual. Each family and individual with autism should have the right to learn about and then select

Each family and individual with autism should have the right to learn about and then select the options that they feel are most appropriate for the individual with autism. To the maximum extent possible, we believe that the decisions should be made by the individual with autism in collaboration with family, guardians, and caregivers. Services should enhance and strengthen natural family and community supports for the individual with autism and the family whenever possible. The service option

supports for the individual with autism and the family whenever possible. The service option designed for an individual with autism should result in improved quality of life. Abusive treatment of any kind is not an option. We firmly believe that no single type of program or service will fill the needs of every individual with autism and that each person should have access to support services. Selection of a program, service, or method of treatment should be on the basis of a full assessment of

of a program, service, or method of treatment should be on the basis of a full assessment of each person’s abilities, needs, and interests. We believe that services should be outcome based to insure that they meet the individualized needs of a person with autism. With appropriate education, vocational training and community living options and support systems, individuals with autism can lead dignified, productive lives in their communities and strive to reach their fullest potential. In

dignified, productive lives in their communities and strive to reach their fullest potential. In addition to the Options Policy, the Autism Society has created guiding principles to further define their work. These guiding principles include:

*   The Autism Society’s efforts are focused on meaningful participation and self-determination in all aspects of life for individuals on the autism spectrum and their families.
*   The Autism Society promotes individual, parental, and guardian choice to assure that people on the autism spectrum are treated with dignity and respect.

*   The Autism Society proactively informs, influences, guides, and develops public policy at the federal, state, and local levels, including setting agendas for policymakers and legislators, for the benefit of the autism community.
*   The Autism Society is the respected voice of the autism community and the primary source for information by providing timely, frequent, relevant, and professional communication.

*   The Autism Society works to ensure that every chapter is a successful chapter, sustained by a collaborative relationship between the national office and chapters to realize mutual benefit and to protect the interests of both.
*   The Autism Society advocates for multi-disciplined approaches to autism research focused on improving the quality of life for individuals across the autism spectrum and their families.

*   The Autism Society works to ensure financial self-sufficiency and growth for all Autism Society operating units and integrated operations across all levels of the Autism Society.

At the very core of the Options Policy is the belief that no single program or treatment will benefit all individuals with autism and that ultimate parents should have informed choices. Furthermore, the recommendation of what is “best” or “most effective” for a person with autism should be determined by those people directly involved – the individual with autism, to the extent possible, and the parents or family members.

Autism Speaks is North America’s largest autism science and advocacy organization. Its goal is to change the future for all who struggle with autism spectrum disorders (ASD). Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments, and cures for ASD; raising public awareness about ASD and its effects on individuals, families, and society; and bringing hope to all who deal with the hardships of this disorder. The organization is committed to

bringing hope to all who deal with the hardships of this disorder. The organization is committed to raising the funds necessary to support these goals. Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to the concerns and take action to address this urgent global public health crisis. The core values reflected in Autism Speaks’ mission statement are (1) recognition that individuals with ASD and their families often

Speaks’ mission statement are (1) recognition that individuals with ASD and their families often face struggle, which inspires a sense of urgency; (2) commitment to discovery through scientific excellence; and (3) the belief and commitment that parents are partners in this effort.

Landmark Contributions Funding Autism Science Since its inception in 2005, Autism Speaks has made enormous strides, committing over $170 million to research through 2014. In support of its mission to improve the future for all who struggle with ASD, Autism Speaks provides funding along the entire research continuum – from discovery to development to dissemination – for innovative projects that hold considerable promise in significantly improving the lives of persons with autism. Annually,

hold considerable promise in significantly improving the lives of persons with autism. Annually, Autism Speaks accepts applications through a number of grant funding mechanisms for investigator-initiated research projects. This includes cornerstone mechanisms such as the Pilot, Basic & Clinical, Treatment, and Predoctoral Fellowship Awards, as well as targeted mechanisms including Postdoctoral Fellowships in Translational Autism Research and the Suzanne and Bob Wright Trailblazer Award.

Fellowships in Translational Autism Research and the Suzanne and Bob Wright Trailblazer Award. Assessing the Impact of Research Grant Funding A survey was conducted to assess the outcomes and impact of Autism Speaks-funded grants completed by 2010. The vast majority (82%) of respondents reported the major finding as a novel discovery, while only 5% reported a negative result. The impacts of these research findings were most often to inform future research strategies and translate basic science

research findings were most often to inform future research strategies and translate basic science discoveries into novel diagnostic and treatment methods. The 107 completed research grants resulted in over 1000 presentations at scientific conferences, scientific abstracts, and peer-reviewed journal publications. For fellowship grants that aim to attract new scientists to the field of autism, 88% of fellows reported that it was their first experience in autism research and 95% intended to stay

of fellows reported that it was their first experience in autism research and 95% intended to stay in the field. Finally, for each dollar Autism Speaks invested in these grants, investigators secured $10 in additional funding, with close $100 million dollars in leveraged funding to date including over $77 million in federal grants. Dissemination of new knowledge and building upon existing findings are critical to maximizing the impact of Autism Speaks’ research investments and to accelerating

are critical to maximizing the impact of Autism Speaks’ research investments and to accelerating the pace of scientific discovery. To ensure that new knowledge resulting from Autism Speaks-supported research can be accessed, read, applied, and built upon, the organization expects its researchers to publish their findings in peer-reviewed journals. It is a condition of Autism Speaks’ Public Access Policy that all peer-reviewed articles supported in whole or in part by its grants must be made

Policy that all peer-reviewed articles supported in whole or in part by its grants must be made available in the PubMed Central online archive.

Science Programs and Initiatives In addition to investigator-initiated research grants, Autism Speaks supports a number of targeted clinical programs and initiatives. The Autism Treatment Network (ATN) is the first network devoted to addressing the medical conditions associated with ASD and providing comprehensive care. With the help of $12 million in federal funding, the ATN is developing national standards for the medical treatment of ASD across 17 sites in the United States and Canada. The

standards for the medical treatment of ASD across 17 sites in the United States and Canada. The Autism Genome Project – a collaboration of 120 scientists from 19 countries – uses Autism Speaks genetic database (Autism Genetic Resource Exchange) and brain bank (Autism Tissue Program) to identify new genes that contribute to autism risk, leading to multiple discoveries that impact the understanding of the biology and treatment of autism. The Toddler Treatment Network and High Risk Baby below

of the biology and treatment of autism. The Toddler Treatment Network and High Risk Baby below Siblings Research Consortium are collaborations of 23 scientists from 19 universities who have developed guidelines for early recognition of infants at risk and early intervention approaches for young toddlers with autism. Autism Speaks funded the launch of the Interactive Autism Network (IAN), the first national online autism registry, which is accelerating autism research by linking more than 10,000

national online autism registry, which is accelerating autism research by linking more than 10,000 registered families to researchers nationwide. As part of its international development efforts, Autism Speaks launched the Global Autism Public Health Initiative (GAPH), an ambitious advocacy effort that aims to increase autism awareness, enhance capacity and explore unique opportunities in research, and improve service delivery worldwide. Through this effort, Autism Speaks supported the

research, and improve service delivery worldwide. Through this effort, Autism Speaks supported the translation and adaptation of diagnostic instruments in languages spoken by 1.75 billion people across the globe. Great advances in the understanding of autism’s biology have led Autism Speaks to dedicate increased emphasis to translational research. Their translational research program seeks to accelerate the pace at which basic scientific discoveries are translated into new and effective ways of

the pace at which basic scientific discoveries are translated into new and effective ways of diagnosing, and treating autism spectrum disorders. This includes “bench to bedside” investigations that move the most promising medicines and other interventions from the laboratory into clinical trials in real world settings such as hospitals, clinics and communities – with the goal of improving outcomes for individuals on the autism spectrum.

Awareness Autism Speaks’ award-winning “Learn the Signs” campaign with the Ad Council has received more than $258 million in donated media and helped raise awareness of autism to unprecedented levels. Through collaboration between the State of Qatar and Autism Speaks, the UN sanctioned a World Autism Awareness Day to be celebrated in perpetuity on April 2, one of only three disease-specific awareness days of its kind. Autism Speaks celebrates World Autism Awareness Day through its “Light It Up

days of its kind. Autism Speaks celebrates World Autism Awareness Day through its “Light It Up Blue” initiative that has featured the illumination of major US and international landmarks in blue light, including the Empire State Building, Niagara Falls, and the Kingdom Tower in Riyadh, Saudi Arabia. Autism Speaks’ web site, autismspeaks.org, has grown to be the most comprehensive and most visited website on autism with over 2.7 million visitors in 2010. Walk Now for Autism Speaks awareness and

website on autism with over 2.7 million visitors in 2010. Walk Now for Autism Speaks awareness and fundraising events are held in more than 80 cities across North America, and more than 350,000 individuals participated in 2010.

Family Services Autism Speaks has provided to families easily accessible and understandable tools and resources for the autism community. The 100 Day Kit – available in English and Spanish – provides a roadmap for newly diagnosed families on how to move forward effectively during the first 100 days following diagnosis. The Asperger/High-Functioning Autism Kit assists families in getting the critical information they need in the first 100 days after a diagnosis specific to Asperger syndrome.

information they need in the first 100 days after a diagnosis specific to Asperger syndrome. The School Community Tool Kit assists members of the school community in understanding and supporting students with autism. Most recently developed, the Transition Tool Kit is a guide to assist families on the journey from adolescence to adulthood. The Autism Video Glossary is a free web-based tool to help parents and professionals learn more about the early warning signs of autism. An online Resource

parents and professionals learn more about the early warning signs of autism. An online Resource Guide provides families with almost 30,000 resources on everything from diagnosis and treatment centers to autism-friendly barbers. Autism Speaks’ Family Services Community Grants program has thus far funded nearly $3 million to expand innovative and effective community services around the country for people with autism of all ages. The organization is a primary organizer of Advancing Futures for

people with autism of all ages. The organization is a primary organizer of Advancing Futures for Adults with Autism, which is working to prioritize the needs for adults with autism in order to develop a national policy agenda.

Advocacy Autism Speaks has played a leading role at the federal and state levels to advocate for legislation that benefits people with autism and their families. The Combating Autism Act of 2006 authorized nearly $1 billion in autism research and support, and current efforts are focusing on reauthorizing and expanding research and service funding at the federal level. Among the organization’s key goals for the next 5 years is to fight for legislation that will end autism insurance

key goals for the next 5 years is to fight for legislation that will end autism insurance discrimination in all 50 states, as well as at the federal level. Thirty-one states now require insurance companies to cover evidence-based medically necessary autism treatments, including behavioral health treatments, with legislation pending in about ten additional states. It also plans to work with the federal government to set a national policy agenda for services and support of adults with autism.

Major Activities Research Grant Programs Autism Speaks offers many types of grants that target critical areas of autism research. The goal is to facilitate and promote efforts that will produce significant findings to lead to discoveries of the causes and development of treatments and improvements in the lives of people with autism.

*   Pilot Research Grants stimulate the exploration of new avenues of research through 2-year awards aimed at testing novel ideas related to autism. These grants serve to bring new investigators into the field and allow researchers to collect preliminary data, which can permit them to compete for larger grants in future.

*   Treatment Research Grants address the urgent need to develop effective therapies to treat those living with the disorder today by supporting research focused on all aspects of treatment, including behavioral, psychosocial, biomedical, and technological interventions.

*   Basic and Clinical Research Grants build upon established research in a broad range of autism-related areas. They provide researchers with larger awards in order to pursue leads that have already shown promise in pilot studies.
*   Dennis Weatherstone Predoctoral Fellowships are awarded to support highly motivated graduate students with an interest in devoting their careers to autism research.

*   Postdoctoral Fellowships in Translational Autism Research are designed to support promising, well-qualified postdoctoral scientists in their pursuit of research training that involves translation of biological discoveries toward novel and more effective methods for treating or diagnosing ASD. This is accomplished by encouraging multidisciplinary collaboration among basic scientists, applied researchers, and clinicians.

*   Suzanne and Bob Wright Trailblazer Awards are designed to accelerate the pace of autism science. In commemoration of Autism Speaks’ fifth anniversary and to honor the organization’s pioneering cofounders, the Trailblazer Award is designed to respond quickly in funding highly novel projects with the potential to be transformative and/or to overcome significant research roadblocks.

Science Initiatives As important as individual grants, initiative projects give Autism Speaks a much more proactive role in promoting specific research. Initiatives frequently involve formation of collaborative research efforts, support of targeted research, organization of research meetings, and creation of research resources.

*   The Autism Genome Project (AGP) is the largest study ever conducted to find the genes associated with inherited risk for autism. The ultimate goal is to enable doctors to biologically diagnose autism and researchers to develop universal medical treatments and a cure.

*   The International Autism Epidemiology Network (IAEN) is an effort to understand the prevalence and causes of autism, particularly across diverse genetic and cultural settings. The activities of this network led to a multinational registry program to examine pre and perinatal factors associated with autism in the largest cohort of children with autism to date.

*   The Global Autism Public Health Initiative (GAPH) aims to increase public and professional awareness of autism spectrum disorders worldwide, to enhance research expertise and international collaboration, and to improve service delivery in underserved populations.
*   The Environmental Factors in Autism Initiative targets research that seeks to understand and identify the potential role environmental factors play in triggering autism.

*   The Innovative Technology for Autism Initiative was established to lead in the development of products that provide real world solutions to issues faced by those with autism, their families, educators, healthcare specialists, and researchers.

*   The High Risk Baby Siblings Research Consortium (BSRC) aims to accelerate the understanding of the earliest markers of autism by bringing together the major research groups in the field to investigate infant siblings of children with ASD, including studying the heterogeneity of symptoms and developing best clinical practices.
 Clinical Programs Autism Speaks’ clinical programs assist the research community in a variety of ways and include the following:

*   The Autism Genetic Resource Exchange (AGRE) is a repository (gene bank) of genetic and clinical information from families with two or more members diagnosed with an ASD that is made available to autism researchers worldwide. For over 10 years, AGRE has accelerated the pace of autism research by collecting genetic and clinical data and providing it to researchers, allowing them to focus efforts on their investigations rather than data collection. www.agre.org

*   The Autism Tissue Program (ATP) is dedicated to increasing and enhancing the availability of postmortem brain tissue to as many qualified scientists as possible to advance autism research. Brain tissue allows scientists to go far beyond the constraints of other technologies and study autism on both a cellular and molecular level. www.autismtissueprogram.org

*   The Autism Treatment Network (ATN) is a network of hospitals and medical centers working together to improve the quality of care for individuals with autism. The clinicians in the ATN provide comprehensive, coordinated, multidisciplinary care to families in their communities, and are dedicated to establishing standards of care for autism that can be shared across the wider medical community. www.autismspeaks.org/atn

*   The Autism Clinical Trials Network (ACTN) is a collaboration of medical and research centers working together on clinical trials of promising pharmaceutical or nutritional treatments for autism. The ACTN approach enables sites to enroll children around the country in a single study, allowing sites to reach recruitment goals in a much shorter amount of time and accelerating progress toward scientifically proven treatments. www.autismspeaks.org/ctn

*   The Interactive Autism Network (IAN) is an innovative online project designed to accelerate the pace of autism research by linking researchers and families. In addition, families of children with an ASD can share information in a secure online setting and become part of the nation’s largest online research effort. www.ianproject.org

Description The Autism Spectrum Addendum (ASA) is a series of guidelines, prompts, and questions that can be woven into the Anxiety Disorders Interview Schedule-IV-Child/Parent (ADIS-IV-C/P; Silverman and Albano 1996), a semi-structured diagnostic interview of childhood anxiety disorders and related condition (e.g., obsessive-compulsive disorder [OCD], major depressive disorder, attention deficit hyperactivity disorder) to better tailor it for children with autism spectrum disorder (ASD). For

hyperactivity disorder) to better tailor it for children with autism spectrum disorder (ASD). For brevity, we will refer to the combined tools as the ADIS/ASA. The purpose of the ASA is: (1) to provide systematic guidelines for differentiating potentially overlapping anxiety and autism spectrum symptoms, such as social avoidance, and (2) to capture distinct worries and fears that arise in ASD but do not fit traditional categories of anxiety as outlined in the Diagnostic and Statistical Manual

do not fit traditional categories of anxiety as outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, TR (DSM-IV-TR; American Psychological Association 2000), or the more recent, DSM, Fifth Edition (DSM-V; American Psychological Association 2013). The ADIS-IV-C/P assess for DSM anxiety disorders with a series of diagnostic modules. In each module, DSM criteria are queried with a mandatory set of questions, about which the interviewer may follow-up as needed to

queried with a mandatory set of questions, about which the interviewer may follow-up as needed to clarify a participant’s meaning, ensure their understanding of the question, and gather more information. In addition, for modules in which symptoms are endorsed, interviewers provide clinician severity ratings (CSR) from 0 (not severe) to 8 (extremely severe), with 4 being the cut-off for diagnosis and 1–3 used to indicate subclinical symptoms. Typically, the ADIS-IV-C/P is administered to both

and 1–3 used to indicate subclinical symptoms. Typically, the ADIS-IV-C/P is administered to both children and parents and diagnoses are based on composite ratings, that is, the highest CSRs provided for each diagnostic module by either the parent or the child interviewer. Though having multiple informants is preferable whenever possible in clinical assessment, initial development of the ASA has focused on the parent interview – the ADIS-IV-P – given research suggesting that child report may be

on the parent interview – the ADIS-IV-P – given research suggesting that child report may be less reliable in children with ASD (Storch et al. 2012) or, in the case of children without communicative language, impossible to collect.

In the ADIS/ASA, the ADIS-IV-P is administered in its standard form with the ASA content woven in to guide interviewer’s follow-up questions, systematically gather information important for differentiating anxiety and ASD symptoms, and gather information about distinct presentations of anxiety that may be reported. ASA content supports the assessment of Separation Anxiety Disorder, Social Anxiety Disorder, Specific Phobia, Generalized Anxiety Disorder and OCD. Though the ADIS-IV-P is designed

Disorder, Specific Phobia, Generalized Anxiety Disorder and OCD. Though the ADIS-IV-P is designed to assess DSM-IV-TR anxiety disorders, it should be noted that the specific criteria for these disorders were not substantially altered in DSM-V (Kupfer 2015; APA 2000, 2013). In addition to these DSM-consistent diagnoses, the ASA queries for distinct fears and worries that may arise in ASD, including fears of social situations that do not reflect a fear of negative evaluation (referred to as

fears of social situations that do not reflect a fear of negative evaluation (referred to as “other social fears”), uncommon phobias (e.g., fears of toilets, mechanical things, men with beards, specific songs), fears of change, and worries related to preoccupations. The ASA also assesses for compulsive behavior (e.g., insistence that doors remain closed or sleeves rolled up) that is associated with distress, but does not clearly have a compensatory function, as is the case for rituals and

with distress, but does not clearly have a compensatory function, as is the case for rituals and compulsions in OCD. These symptoms are referred to as Ambiguous OCD. Like the standard ADIS-IV-P modules, these other categories of anxiety, if reported, are assigned a CSR from 0 to 8, with 4 representing the cut off for clinically significant symptoms and 0–3 used for subclinical concerns.

Additional items designed to support differential diagnosis and the assessment of these distinct presentations include an expanded interpersonal relationships sections to assess children’s attainment of reciprocal friendships, history of bullying, and levels of social motivation and social awareness. These items provide clinicians with a greater sense of whether social avoidance in a child with ASD may be attributable to social anxiety disorder, other social fears (i.e., fears related to

with ASD may be attributable to social anxiety disorder, other social fears (i.e., fears related to nonverbal communication difficulties), or simply low social interest. They also allow clinicians to assess the extent to which fears of negative evaluation may be adaptive and proportionate rather than maladaptive and excessive (a requirement for diagnosis). Additional differential diagnosis items include queries into levels of sensory sensitivity and perseverative thinking in each child, which

include queries into levels of sensory sensitivity and perseverative thinking in each child, which are used to ensure that these ASD-related difficulties are considered and not misinterpreted as symptoms of specific phobia (e.g., phobia of loud sounds) or generalized anxiety. Each differential item is rated on a 0–3 scale, with 0 representing an absence of difficulties or deficits and 3 indicating significant difficulties.

Historical Background Symptoms of anxiety have long been reported in children with ASD, so much so that anxiety is described as an associated feature of the disorder in the DSM-V and prior version (APA 2000, 2013) as well as the original case descriptions of ASD by Kanner (1943). Nonetheless, the diagnosis of co-occurring anxiety disorders in ASD is not straightforward, given that many symptoms of anxiety are also characteristic of ASD (e.g., social avoidance, ritualistic behavior,

symptoms of anxiety are also characteristic of ASD (e.g., social avoidance, ritualistic behavior, perseverative thinking, arousal dysregulation; Kerns et al. 2016; Vasa et al. 2016). In addition, deficits in communication in ASD may complicate the assessment of anxiety symptoms, some of which are dependent on language (e.g., worries). Finally, a growing body of research suggests that children and adults with ASD experience fears and worries that are both similar and dissimilar to those of

and adults with ASD experience fears and worries that are both similar and dissimilar to those of individuals in the general population (Adams et al. 2019; Den Houting et al. 2018; Halim et al. 2018; Kerns et al. 2014, 2017; Magiati et al. 2017; Scahill et al. 2019). Specific, distinct sources of fear include anxiety related to small changes in the environment, nonthreatening items, sounds, or sights (e.g., beards, glasses, specific songs), anxiety linked to a perseverative interests and

or sights (e.g., beards, glasses, specific songs), anxiety linked to a perseverative interests and anxiety related to difficulties understanding social cues and expectations. Whether the fears and worries of a child with ASD should be considered clinically significant as opposed to normative can also be difficult to determine given that the developmental level of children with ASD may not match their chronological age and because children with ASD often experience stressors, such as bullying

their chronological age and because children with ASD often experience stressors, such as bullying and academic difficulties, about which some anxiety would be appropriate. Given these challenges, it is perhaps unsurprising that estimates of the rates and associated characteristics of anxiety disorders in ASD have varied widely in the research literature (11–84% across studies) and even among studies employing diagnostic interviews (39–84%; Kerns and Kendall 2012; Van Steensel et al. 2011;

studies employing diagnostic interviews (39–84%; Kerns and Kendall 2012; Van Steensel et al. 2011; White et al. 2009). This is likely due, in part, to inconsistency around the differential diagnosis, conceptualization, and measurement of anxiety disorders in ASD across these studies. The ADIS/ASA was developed to address this inconsistency, by providing a systematic and guided approach to differential diagnosis of anxiety in ASD and measuring distinct or ASD-related fears and anxieties as

diagnosis of anxiety in ASD and measuring distinct or ASD-related fears and anxieties as opposed to DSM-anxiety disorders alone. Notably, though a meta-analysis of studies assessing only DSM-consistent symptoms concluded that approximately 39.6% of youth with ASD present with clinically significant anxiety (Van Steensel et al. 2011), more recent studies suggest this rate may be closer to 63–69% when distinct as well as traditional fears are assessed (Kerns et al. 2014, 2020; Den Houting et al.

distinct as well as traditional fears are assessed (Kerns et al. 2014, 2020; Den Houting et al. 2018).

Psychometrics The reliability and validity of an initial version of the ADIS/ASA was first examined in a sample of 59 youth, ages 7–17 years with ASD, who were recruited as part of a neuroimaging study of ASD (i.e., not selected for anxiety; Kerns et al. 2014). In this version, both the child and parent interviews were conducted and final diagnoses reflected the composite CSR from both reports. Support was found for the convergent and discriminant validity of the interview. Both traditional

Support was found for the convergent and discriminant validity of the interview. Both traditional and distinct anxiety CSR were significantly correlated with other measures of anxiety, including the Screen for Child Anxiety and Related Emotional Disorders (SCARED; Birmaher et al. 1999) Total Score and Behavior Assessment System for Children-Second Edition Anxiety subscale (BASC-2; Reynolds and Kamphaus 2004). By comparison, neither traditional nor distinct anxiety CSR were significantly

and Kamphaus 2004). By comparison, neither traditional nor distinct anxiety CSR were significantly associated with externalizing behavior or daily living skills as measured by the BASC-2. Distinct anxiety CSR, but not traditional anxiety CSR, were significantly associated with each other, but had distinct relationships to other measures of autism-related symptoms. Specifically, only distinct anxiety was significantly associated with higher levels of autism symptoms (Social Responsiveness Scale,

was significantly associated with higher levels of autism symptoms (Social Responsiveness Scale, Total Score; Constantino and Gruber 2012) and atypical behaviors (BASC-2 atypicality subscale). Inter-rater reliability, assessed in 35% of the sample, suggested good agreement between evaluators on both diagnoses (percent exact agreement: 95–100%) and CSR (Intraclass Correlation [ICC] = 0.89–0.99). Retest reliability, assessed in 25% of the sample, indicated that diagnoses (100% exact agreement)

Retest reliability, assessed in 25% of the sample, indicated that diagnoses (100% exact agreement) and CSR were also consistent over an approximately 2-week time period (0.88–1.00).

Results from this study were used to refine the parent version of the ASA to create the current tool, the psychometrics of which were examined in a new sample of 79 children ages 9–13 years with ASD and no more than mild intellectual impairments (IQ range: 68–143) who were seeking treatment for anxiety as part of a randomized clinical trial (Kerns et al. 2017). In contrast to Kerns et al. (2014), this sample included a larger proportion of children with ASD and co-occurring anxiety disorders,

this sample included a larger proportion of children with ASD and co-occurring anxiety disorders, allowing for a more rigorous test of the inter-rater reliability of the different types of anxiety assessed by the ADIS/ASA modules and CSR. Findings again suggested good agreement between independent raters about both DSM-anxiety diagnoses (Cohen’s Kappa [K] = 0.67–0.91) and CSR (ICC = 0.85–0.98) as well as the clinical significance (K = 0.77–0.90) and CSR (ICC = 0.87–0.95) of distinct anxieties.

well as the clinical significance (K = 0.77–0.90) and CSR (ICC = 0.87–0.95) of distinct anxieties. Support was also found for the discriminant validity of the ADIS/ASA, with partial support for convergent validity. In keeping with Kerns et al. (2014), neither ADIS/ASA traditional nor distinct anxiety CSR were significantly correlated with measures of parent-reported attention or aggression difficulties in the child (as measured by the Child Behavior Checklist; Achenbach et al. 2001). In

difficulties in the child (as measured by the Child Behavior Checklist; Achenbach et al. 2001). In addition, distinct but not traditional anxiety was associated with a measure of ASD severity (Autism Diagnostic Observation Schedule Comparison Score; Gotham et al. 2009). In contrast to Kerns et al. (2014), traditional but not distinct anxiety CSR were associated with other measures of parent-reported anxiety (Child Behavior Checklist DSM Anxiety Subscale). Cumulatively these results suggest that

anxiety (Child Behavior Checklist DSM Anxiety Subscale). Cumulatively these results suggest that the association of traditional anxiety measures and distinct anxiety may vary depending upon sample characteristics and recruitment methods.

Clinical Uses The ADIS/ASA is designed to help clinicians determine whether a child with ASD meets criteria for a DSM anxiety disorder, other forms of clinically significant anxiety, and OCD. As it is a diagnostic tool, it should only be administered by those with or receiving training in child development and psychological evaluation. Given that administration is typically between 1.5 to 3 h (Mean = 105.36 min, Standard Deviation = 30.32 min; Kerns et al. 2017), the ADIS/ASA is not

to 3 h (Mean = 105.36 min, Standard Deviation = 30.32 min; Kerns et al. 2017), the ADIS/ASA is not recommended as a primary or universal screening measure, but rather as a tool for differential diagnosis in children with complex case presentations or when precise clinical characterization or behavioral phenotyping is the goal. Importantly, information on the psychometric properties of the ADIS/ASA has only been published on samples of children with ASD between the ages of 7 and 17 years with no

has only been published on samples of children with ASD between the ages of 7 and 17 years with no more than mild intellectual impairments. The ADIS/ASA may also provide a useful conceptual framework for clinicians assessing anxiety in preschoolers and children with ASD and more severe intellectual impairments; however, research to support its use in these populations is still ongoing. Similarly, though prior research suggests that the ADIS-IV-P is sensitive to changes in anxiety in children

though prior research suggests that the ADIS-IV-P is sensitive to changes in anxiety in children with ASD due to treatment (Reaven et al. 2012; Weiss et al. 2018), whether this also the case for the ADIS/ASA is being studied (see Kerns et al. 2016).

The Autism Spectrum Rating Scales (ASRS) (Goldstein and Naglieri 2009) are designed to measure behaviors reported by parents and/or teachers associated with autism spectrum disorders (ASDs) for children and youth aged 2 through 18 years. The ASRS can help guide diagnostic decisions and can be used during treatment planning, ongoing monitoring of response to intervention, and program evaluation. The ASRS includes items related to DSM-IV-TR autistic disorder, Asperger’s disorder, pervasive

The ASRS includes items related to DSM-IV-TR autistic disorder, Asperger’s disorder, pervasive developmental disorder not otherwise specified (PDD NOS), and DSM 5 autism spectrum disorder. As recognition and prevalence of these conditions increase, the risk of over- and underdiagnosis increases in parallel. The need for a valid, reliable, and carefully crafted tool for assessment becomes paramount. The ASRS has full-length and short forms for both young children aged 2 to 5 years and youth aged

The ASRS has full-length and short forms for both young children aged 2 to 5 years and youth aged 6–18 years. The full-length ASRS (2–5 years) comprises 70 items, and the full-length ASRS (6–18 years) consists of 71 items. There are separate parent (ASRS parent ratings) and teacher (ASRS teacher ratings) forms for both age groups. The ASRS short forms were developed by selecting the items that best differentiate between nonclinical youth and youth diagnosed with ASD. The ASRS short form (2–5

best differentiate between nonclinical youth and youth diagnosed with ASD. The ASRS short form (2–5 years) and ASRS short form (6–18 years) both contain 15 items, and parents and teachers/caregivers complete the same form. All scales are set to the T-score metric, which has a normative mean of 50 and standard deviation of 10. All of the ASRS forms are available in the MHS QuikScore format. The rater writes on the external layers of the form, and the results are transferred to a hidden scoring

writes on the external layers of the form, and the results are transferred to a hidden scoring grid within the internal layers. The assessor then uses the internal layers for tabulating and profiling results. Each ASRS QuikScore form includes profile sheets, which are used to convert raw scores to T-scores and percentiles. These profile sheets also include a chart where scores can be plotted for a graphic display of the results. For individuals who wish to use software or online scoring, ASRS

a graphic display of the results. For individuals who wish to use software or online scoring, ASRS items are also provided in a response booklet format that does not include the scoring pages. The ASRS can be completed and automatically scored online wherever an Internet connection is available. Paper-and-pencil forms can also be scored online by entering responses from a paper-and-pencil administration into the online program. All ASRS forms can be scored using the scoring software by entering

into the online program. All ASRS forms can be scored using the scoring software by entering responses from a completed paper-and-pencil administration into the software program.

In some instances, the assessor may wish to obtain information about a group of youth instead of an individual. In a preschool or school setting, the ASRS can be used to screen a group of children to determine which children might require a full evaluation or to identify children who might benefit from additional support. The ASRS short forms have excellent reliability and validity, are good predictors of the ASRS total score, and were developed for screening purposes. High scores suggest that

of the ASRS total score, and were developed for screening purposes. High scores suggest that additional considerations are needed. For example, high scores on the short form might indicate the need for further examination with the full-length form, a more thorough evaluation, and/or some treatment to modify troubling behaviors. Results from the ASRS can inform decisions about the effectiveness of a particular individual or group intervention. When used in a clinical setting, ASRS results can be

a particular individual or group intervention. When used in a clinical setting, ASRS results can be collected at the beginning of an intervention and at several points throughout the intervention (in intervals of 4 weeks) in order to evaluate whether a particular program is associated with symptom improvement. In research studies, group data from the ASRS can be analyzed to determine whether change (pre- versus posttreatment or experimental treatment versus control group) is significant.

change (pre- versus posttreatment or experimental treatment versus control group) is significant. Results from these types of evaluations can be helpful in supporting the need for the continuation of a treatment program or line of research. ASRS reports can be obtained using the software or online scoring option. There are three report types for all of the ASRS forms: the interpretive report (provides detailed results from one administration), the comparative report (provides a multi-rater

(provides detailed results from one administration), the comparative report (provides a multi-rater perspective by combining results from up to five different raters), and the progress monitoring report (provides an overview of change over time by combining results of up to four administrations from the same rater).

Historical Background The ASRS development project encompassed 5 years (2004 to 2009), thousands of ratings by parents and teachers, intensive research, sophisticated statistical analyses, and multiple data collection sites. Development of the ASRS occurred in three phases: (1) conceptualization/initial planning, (2) pilot study, and (3) final scale construction (including the normative study). The ASRS was originally conceptualized as an assessment tool that would assess autism spectrum

The ASRS was originally conceptualized as an assessment tool that would assess autism spectrum disorder (ASD) symptoms from early childhood through adolescence; therefore, the initial age range of the assessment was 2–18 years. Because of the importance of multi-informant assessment, it was determined from the onset that both parent and teacher forms would be created. Since great importance was placed on the ability to compare results across different raters, a decision was made to include

placed on the ability to compare results across different raters, a decision was made to include identical items on both the parent and teacher forms. A comprehensive review of current theory combined with literature on the assessment of ASDs, the DSM-IV-TR and ICD-10 diagnostic criteria, and the authors’ experiences were used to determine the preliminary content structure. This structure guided item generation, and multiple items were developed to capture key components of each construct. A

item generation, and multiple items were developed to capture key components of each construct. A DSM-5 scale was added in 2013 as well as an accommodated scoring profile for nonverbal children in 2012.

Psychometric Data Development of the final scale involved normative and clinical data collection, factor analyses to determine the factor structure of the forms, the creation of the total score, the DSM-IV-TR scale, and the treatment scales. The final scale construction began with the collection of normative and clinical data. The normative samples include 2,560 ratings (640 for the 2–5-year-olds rated by parents and teachers/childcare providers and 1,920 for the 6–18-year-olds also rated by

rated by parents and teachers/childcare providers and 1,920 for the 6–18-year-olds also rated by parents and teachers). These samples include ratings of 40 males and 40 females at each age and are representative of the US population across several demographic variables. The clinical samples include nearly 700 ratings of youth diagnosed with ASD and over 500 ratings of youth diagnosed with other clinical disorders (including delayed cognitive development, delayed communication development, ADHD,

disorders (including delayed cognitive development, delayed communication development, ADHD, anxiety disorders, depressive disorders, and language disorders). In order to examine the underlying factor structure of the ASRS items, data from both the normative and clinical samples were used in exploratory factor analyses (via principal axis extraction and direct oblimin rotation). Results of these analyses suggested that a two-factor model was most suitable for both the parent and teacher ASRS

analyses suggested that a two-factor model was most suitable for both the parent and teacher ASRS (2–5 years) forms, while a three-factor model was most suitable for the parent and teacher ASRS (6–18 years) forms. These factor-derived scales were labeled the “ASRS Scales” and include social/communication and unusual behaviors on all forms, as well as self-regulation on the ASRS (6–18 years). In order to ensure that there was no redundancy in the scales, the ASRS Scale scores were

years). In order to ensure that there was no redundancy in the scales, the ASRS Scale scores were intercorrelated (i.e., redundancy would be implied if the correlations were very high) on the total sample (i.e., the normative plus the clinical sample). Results indicated that the scale intercorrelations met theoretical expectations (i.e., they were moderate in size), providing additional support for the multidimensionality of the measure.

Clinical Uses The ASRS can be used as an aid in the diagnostic process. Standardized scores from the ASRS allow the assessor to effectively compare an individual to a norm group in an objective and reliable manner. Scores can be integrated with other information to form a complete picture of the individual. When used in combination with other assessment information, results from the ASRS can help guide diagnostic decisions, treatment planning, and ongoing monitoring of response to

ASRS can help guide diagnostic decisions, treatment planning, and ongoing monitoring of response to intervention. The ASRS can also be used to evaluate the effectiveness of a treatment program for a child with ASD. The ASRS can also be a tool for researchers in a variety of settings and research protocols. There are several advantages the ASRS offers to researchers. First, the scales were carefully developed to measure a wide spectrum of behaviors associated with ASD. Second, the various scales

developed to measure a wide spectrum of behaviors associated with ASD. Second, the various scales included provide scores based upon a normative sample aged 2–18 years based on a diverse, representative group of individuals. Third, the scales included on the ASRS have demonstrated reliability, which is particularly important in correlational studies, and validity, which is particularly important for both internal and external validities of any research project. Fourth, the psychometric

for both internal and external validities of any research project. Fourth, the psychometric qualities of the scale are well documented in this manual. Fifth, comparisons to other instruments are easier due to the availability of standard scores. The ASRS was carefully developed and researched to provide the most useful set of items for ASD identification and intervention. Any rating scale has inherent limitations; however, when used appropriately, the ASRS is a useful tool in the entire process

limitations; however, when used appropriately, the ASRS is a useful tool in the entire process of defining the problem, eliciting information from parents and teachers, planning treatment and intervention, and measuring treatment outcome in ASD.

See Also *   Autism Diagnostic Observation Schedule (ADOS): Toddler Module *   Childhood Autism Rating Scale *   DSM-5  A multitude of theories have attempted to explain certain cognitive characteristics of autism. Although adherents of some of these theories (such as theory of mind) may once have contended that their particular theory could fully explain autism, it is generally considered nowadays that an explanation of autism requires a synthesis of theory. Three theories – theory of mind,

that an explanation of autism requires a synthesis of theory. Three theories – theory of mind, executive (dys)functioning, and central coherence – assume a special place in the pantheon of cognitive autism theory. In the limited space available, we provide a brief introduction to these three “mainstream” theories together with various other “alternative” theories including the single attention/monotropism hypothesis of Murray et al. (2005) which, arguably, explains more characteristics of

hypothesis of Murray et al. (2005) which, arguably, explains more characteristics of autism than any other theory. More than 70 years after Asperger and Kanner first wrote about autism, there is still no definitive autism theory. We doubt there will ever be a full theoretical explanation of any neurotype because of the complexities involved. But we also firmly believe that the theories we introduce here are of great value in describing characteristics of autism that can help autistic

we introduce here are of great value in describing characteristics of autism that can help autistic individuals to understand themselves better and help those who live with and/or support autistic individuals to understand autism. Improved understanding should lead to better interventions and other support for autistic people.

Cognitive Theories of Autism Theory of Mind The theory of mind (ToM) is one of the three “big ideas” of autism theory. ToM refers to an individual’s ability to attribute mental states to themselves and to others (Frith and Happé 1999). Put in another way, ToM is the everyday folk psychology that people use to make sense of other people’s behavior by hypothesizing about the beliefs, desires, and feelings that motivate actions. ToM is a way of describing the need for individuals to develop an

feelings that motivate actions. ToM is a way of describing the need for individuals to develop an understanding that objects and other persons have separate existence, that other persons have their own mental state that differs from theirs, and be able to “put on the shoes” of another person mentally. Predicting another person’s likely behavior can be likened to developing a hypothesis about expected behavior. ToM is often referred to as “mind reading” (Baron-Cohen 1995) although it involves

behavior. ToM is often referred to as “mind reading” (Baron-Cohen 1995) although it involves the use of sensory stimuli to guess the mental state of others and there can be no direct access to another person’s mind in the sense of a psychic power! An example should better explain the nature of ToM difficulties. It relates to a 16-year-old boy with Asperger syndrome who we will call James. James cannot see things from the perspective of his 8-year-old sister. Like other children of her age, his

see things from the perspective of his 8-year-old sister. Like other children of her age, his sister makes statements and asks questions that he finds ridiculous such as: “I want to go to the moon on holiday” and “I’m going to have 20 children when I grow up.” James cannot ignore things like this, agree, or join in on the same line of thought, as he cannot see these comments for what they are, the things a child much younger than him will say. Instead he has to ridicule what she says and

the things a child much younger than him will say. Instead he has to ridicule what she says and explain in detail why it is impossible for her to go to the moon and that it is extremely unlikely that she will ever have so many children. Naturally, this upsets his sister and can make family life stressful. No amount of parental explanation makes any difference to James; his limited ToM prevents him from putting himself in his sister’s shoes and interpreting her comments from her perspective

him from putting himself in his sister’s shoes and interpreting her comments from her perspective instead of his own.

ToM probably developed in human beings relatively recently (thousands of years ago) to enable us to cope with a social environment that was becoming increasingly complex as the species developed. Social interaction aided by ToM will have had benefits for both reproduction and survival. A newborn child has no understanding that the world exists independently of itself. The child is unable to form mental representations of persons or objects. At this earliest stage of its life, an object exists

mental representations of persons or objects. At this earliest stage of its life, an object exists for the child only while it is in sight and ceases to exist when out of sight. As the child grows, its developing ToM enables it to form mental representations of other objects and persons, and, later on, it learns that other persons have a thinking existence of their own (Frith and Happé 1999). The ability of typically developing children to evaluate the thoughts, emotions, intentions, and

The ability of typically developing children to evaluate the thoughts, emotions, intentions, and beliefs of others grows over time. While major advances in a child’s ToM take place during preschool years, this ability continues to develop throughout childhood and even into adolescence and adulthood. An autistic young person’s ToM ability may, at least partially, “catch up” with that of their typically developing peers during their adolescence and adulthood.

Executive (Dys)Functioning A further theory that attempts to explain aspects of autism is known as executive (dys)functioning. Although executive function (EF) was not defined until the 1970s, the beginnings of this concept date right back to a railway accident in 1840. A man called Phineas Gage – sometimes known as “neuroscience’s most famous patient” – was a railway construction foreman in the USA leading a team cutting a railway bed in the state of Vermont. He suffered a very serious head

USA leading a team cutting a railway bed in the state of Vermont. He suffered a very serious head injury when a premature explosion sent a tamping iron – an iron rod – flying in his direction. The tamping iron was nearly 4 feet long, 1 ¼ in. in diameter, and weighed 13 ¼ pounds. It “penetrated Gage’s left cheek, ripped into his brain, and exited through his skull, landing several dozen feet away.” The rod destroyed a large part of Gage’s left frontal lobe. He survived this dreadful accident,

The rod destroyed a large part of Gage’s left frontal lobe. He survived this dreadful accident, but the severe injuries caused a change in his personality and behavior. He became “disinhibited” or “hyperactive,” as is often found in persons with damage to the prefrontal cortex. It was Gage’s accident in particular that caused the medical profession to consider the role of the frontal lobes in what we now call EF, although real progress in developing this concept did not begin until the 1950s.

we now call EF, although real progress in developing this concept did not begin until the 1950s. Delis (2012, p. 14) writes that “Neither a single ability nor a comprehensive definition fully captures the conceptual scope of executive functions: rather, executive functioning is the sum product of a collection of higher level skills that converge to enable an individual to adapt and thrive in complex psychosocial environments.” Others have defined EF as “an overarching term that refers to mental

psychosocial environments.” Others have defined EF as “an overarching term that refers to mental control processes that enable physical, cognitive, and emotional self-control” (Corbett et al. 2009, p. 210) and “several abilities for preparing and engaging in complex organized behaviour” (Macintosh and Dissanayake 2004, p. 426). Although the main components of EF have yet to be established definitively, they are likely to include formation of abstract concepts, planning, focusing and sustaining

they are likely to include formation of abstract concepts, planning, focusing and sustaining attention, shifting focus, and working memory (Macintosh and Dissanayake 2004; Attwood 1998). Many studies have demonstrated that persons on the autism spectrum often experience difficulties with executive functioning. However, although these difficulties can be pervasive, they are not all necessarily universal in autism. It is also the case that some executive function processes are often less likely

in autism. It is also the case that some executive function processes are often less likely to be affected in autism than others (e.g., difficulty with planning is more common than an inability to inhibit impulsive behavior).

Central Coherence Theory The third main cognitive theory of autism is the theory of central coherence (CC). This theory, developed by Uta Frith and Francesca Happé (1994), attempts to explain why persons with autism exhibit particular strengths in addition to weaknesses. CC is the ability to see the gist – the so-called big picture – rather than just the detail of which something is comprised. CC theory originally proposed that persons with autism will have what Happé and Frith called weak CC

theory originally proposed that persons with autism will have what Happé and Frith called weak CC in that there will be a tendency for them to focus on the detail at the expense of being able to see things in the round and generalize. Tony Attwood describes weak CC as being “remarkably good at attending to detail but (having) a weakness in perceiving and understanding the overall picture, or gist” (Attwood 1998, p. 241). In accordance with this theory, it should be possible to see strengths in

(Attwood 1998, p. 241). In accordance with this theory, it should be possible to see strengths in the manipulation of detail in autism in addition to difficulties in forming a holistic picture from the detail. In a later development of their CC theory, Happé and Frith (2006) contend that there is a preference for detail in autism rather than a weakness in CC. They now write of a difference in information processing style in autism, with concomitant strengths, rather than impairment. Happé and

processing style in autism, with concomitant strengths, rather than impairment. Happé and Frith also argue that there is a continuum of CC along which all people fit, with autistic individuals lying at the “detail” end of the continuum.

Single Attention/Monotropism Murray et al. (2005) have investigated the current diagnostic criteria for autism in the light of their theory that autism has its foundation in what they describe as single attention/monotropism. These authors hypothesize that a limited amount of attention available to all people – autistic or not – plays a fundamental part in day-to-day life and is largely a matter of inheritance. They argue that differences in the spread of attention available to individuals are

of inheritance. They argue that differences in the spread of attention available to individuals are normally distributed between a wide spread of attention over many interests at one end of the distribution and a much narrower focus of attention on only a few interests at the opposite end. Importantly, they regard the “restricted range of interests” referred to in the DSM-IV and ICD-10 diagnostic criteria, and which they call monotropism (A colleague has suggested that the term “monotropism”

criteria, and which they call monotropism (A colleague has suggested that the term “monotropism” would be more appropriate for someone with a single interest rather than few interests.), as being central to autism. Instead of a preference for detail over wholes, Murray, Lesser, and Lawson argue for a state of heightened (hyper)awareness inside an “attention tunnel” and lessened (hypo)awareness outside this tunnel. They consider that their proposed tunnel effect also causes the hypersensitivity

this tunnel. They consider that their proposed tunnel effect also causes the hypersensitivity and hyposensitivity to sensory experiences often seen in autism. Their proposal is that autistic people are hypersensitive within the attention tunnel and hyposensitive outside the tunnel. The single attention/monotropism theory is one of the few that seeks to explain both cognitive and sensory differences in autism. The “big three” theories say nothing about the sensory issues so often associated with

in autism. The “big three” theories say nothing about the sensory issues so often associated with autism. It is our belief that good autism theory, or theory synthesis, must be capable of explaining the cognitive and sensory differences.

Joint Attention Joint attention refers to a group of nonverbal behaviors for communicating with another person about something, usually an object. Joint attention includes altering eye gaze between the other person and the object and the use of gestures such as pointing. There is no definitive definition of joint attention but a number of “competing” attempts to set out what it involves. To further complicate matters, there are two aspects of joint attention to be considered, initiation of

complicate matters, there are two aspects of joint attention to be considered, initiation of joint attention and response to joint attention. Initiation of joint attention refers to a child’s action in seeking the attention of another person. A child’s response to another person’s seeking to gain their attention – which could be either a shift in the gaze of the other person’s eyes or a pointing action – is known as response to joint attention. Joint attention is important because, in a

action – is known as response to joint attention. Joint attention is important because, in a typically developing child, it is associated with the child’s development of a further concept known as intentional communication which has been referred to as understanding and controlling the transfer of information between individual human beings (or members of other species). A communication must involve a “sender,” a recipient, and signals conveying information between sender and recipient.

involve a “sender,” a recipient, and signals conveying information between sender and recipient. Woodruff and Premack (1979, p. 334) write that communication is intentional if “the sender (i) appreciates the fact that his behavior transmits information, (ii) recognizes that the recipient also knows that his behaviour is informative, and (iii) is able to choose from a set of alternatives that course of action (or inaction) which will provide (or suppress) a given bit of information.” While in

of action (or inaction) which will provide (or suppress) a given bit of information.” While in any communication there is a transfer of information between sender and recipient, they stress that in intentional communication, the transfer is purposive because the sender knows that their communication may have a particular effect on the recipient and that effect is sought by the sender. At some point, the young child begins to understand that another person can help them to achieve some end and

the young child begins to understand that another person can help them to achieve some end and that they can communicate their wish to that other person by sending signals. As the child develops, their communication increasingly becomes intentional. It is generally considered that a typically developing child learns between the ages of 6 and 9 months that a particular communicative action or signal has the same effect each time. Whether or not joint attention is a type, or a characteristic, of

has the same effect each time. Whether or not joint attention is a type, or a characteristic, of intentional communication, it is regarded as crucial in developmental terms because without it, functional speech would not be developed by a child. It is argued that in autism, there is either a delay in the development of the joint attention behaviors associated with intentional communication or such behaviors are not developed at all.

Empathizing/Systemizing Theory Empathizing involves the identification of another person’s emotions and thoughts, the ability to respond to emotions and thoughts appropriately, and the ability to predict a person’s behavior. Empathizing has been likened to folk psychology which is the common sense ability of human beings to explain and predict behavior and mental states in other human beings. According to Baron-Cohen (2002, p.248), systemizing “is the drive to analyse the variables in a

According to Baron-Cohen (2002, p.248), systemizing “is the drive to analyse the variables in a system, to derive the underlying rules that govern the behavior of a system . . . Systemizing allows you to predict the behavior of a system, and to control it.” Systemizing skills include mathematical reasoning, mental rotation, mechanical reasoning, and spatial visualization. Systemizing has been compared to folk physics, which is the untrained understanding of basic physical phenomena by human

compared to folk physics, which is the untrained understanding of basic physical phenomena by human beings. Research into sex differences in cognition has led to hypotheses that women are better than men at empathizing but that men are better than women at systemizing. The realization that persons with autism appear to have difficulty empathizing with other people in some cases, but may also exhibit strong systemizing skills, has caused some scholars to wonder if there is any connection between

strong systemizing skills, has caused some scholars to wonder if there is any connection between autism and a person’s gender. It is Baron-Cohen’s contention that a strong tendency to systemize and weak ability to empathize should be seen in autism. Because he thinks that systemizing is stronger and empathizing weaker in autism than in typically developing men, he has gone on to argue that autism is an example of what he refers to as an “extreme male brain.”

Interaction Theory In a challenge to “theory of mind” through claiming that direct access to other minds is not just possible but is the primary means by which individuals understand what another person is thinking, Shaun Gallagher relies on the developmental psychological concepts of “primary intersubjectivity” and “secondary intersubjectivity.” He writes of primary intersubjectivity that “By the end of the first year of life, infants are capable of a non-mentalistic, perceptually-based

“By the end of the first year of life, infants are capable of a non-mentalistic, perceptually-based embodied understanding of the intentions and dispositions of other persons” (Gallagher 2008, p. 166, our italics) and that “secondary intersubjectivity builds on these primary perceptual and interactive capabilities . . . when infants start to recognize context as significant” (ibid., p. 166, our italics). He goes on to state that many theorists regard “the capabilities of primary and secondary

italics). He goes on to state that many theorists regard “the capabilities of primary and secondary intersubjectivity to be precursors to full-blown ToM” (ibid., p. 166, author’s italics) in the sense that fully fledged ToM either builds on or replaces primary and secondary intersubjectivity. However, in his opinion “adult phenomenology attests to the continued role of primary and secondary intersubjectivity in our everyday understanding of and interaction with others” (ibid., p.166), quoting

in our everyday understanding of and interaction with others” (ibid., p.166), quoting Scheler and Wittgenstein in his defense and writing that “Psychologists provide important empirical evidence that our everyday adult interaction is primarily perceptual and contextual” (ibid., p. 167, our italics). In other words, he considers that direct access to other minds is achieved by means of perception of facial expressions and body language in the light of the context in which the person does the

of facial expressions and body language in the light of the context in which the person does the perceiving. Tony Wootton (2002, p. 92) writes that “the pattern of [reduced] interactional involvement displayed by the autistic child will have as its corollary a radically diminished acquaintance with the practice of taking other people’s views into account.”

Narrative Practice Hypothesis As previously stated, folk psychology, or commonsense psychology, is the natural capacity to explain and predict the behavior and mental states of other people. Daniel Hutto is sure that there is no need for an innate, hardwired theory of mind ability in human beings because typically developing individuals develop an understanding of folk psychology through continuous exposure during the formative years to stories that teach them about folk psychological

continuous exposure during the formative years to stories that teach them about folk psychological practice. He puts it this way: “Encounters with narratives about those who act for reasons best explain the origins of folk psychological (FP) abilities, both phylogenetically and ontogenetically. Such stories familiarize us with the forms and norms of folk psychology. This is the core claim of the Narrative Practice Hypothesis” (Hutto 2007, pp. 47–48).

Sensorially Disturbed Interaction Hypothesis Victoria McGeer (2001, p. 129) proposes that sensory disturbances may lie at the heart of autism (as well as deafness and blindness) in that “Being excluded from the regulative influences of other people, autistics will not develop habits of agency that conform to shared norms of what it is to experience, think and act in recognizably normal ways” – which, in autism, could account for a failure to develop non-autistic social understanding [McGeer

which, in autism, could account for a failure to develop non-autistic social understanding [McGeer uses the term psycho-practical expertise] – as well-being “cast back on their own resources for managing their sensory experiences perhaps by reducing, repeating or drowning out incoming sensory stimuli in ways they can control” (ibid., p. 129). This could account for a range of typically autistic symptoms such as repetitive and self-stimulatory behaviors. McGeer writes that her speculations

symptoms such as repetitive and self-stimulatory behaviors. McGeer writes that her speculations suggest that “becoming minded as others are minded, and sharing thereby in the advantages of normal psychological knowing, may finally depend on something as basic as having sensory access to others in a way that makes possible their regulative influence on us as developing children” (ibid., p. 129) which, if correct, would reconcile the focus of autistic autobiographical accounts of sensory

129) which, if correct, would reconcile the focus of autistic autobiographical accounts of sensory sensitivities with the focus of non-autistic clinicians and researchers of autism on the social difficulties seen in autism.

Time-Parsing Deficit Hypothesis Jill Boucher (2003, p. 250) refers to the fact that “An earlier hypothesis concerning the psychological cause(s) of language impairment in autism suggested that there is a fundamental deficit in the ability to process transient, sequential stimuli (i.e. stimuli with a temporal dimension) such as speech or manual signing,” which she attempted to revive in the slightly different form of a “time-parsing deficit.” With this theory of autistic language impairment,

different form of a “time-parsing deficit.” With this theory of autistic language impairment, Boucher claimed that autism involves varying levels of difficulty in the understanding of conversation exchanges (or signing) in real time “which contributes to the linguistic aspects of their pragmatic impairment” (ibid., p. 250). She considers that the extent of the difficulty in parsing conversation is dependent on where a person lies on the autism spectrum.

Enactive Mind Hypothesis The enactive mind hypothesis is more of a theoretical framework for understanding autism than an actual theory of autism with Klin et al. writing of their hypothesis as “a framework different from the prevailing computational models of social cognitive development” (Klin et al. 2003, p. 357) involving “disembodied cognition” where cognition and action are separate. The key aspect of the enactive mind hypothesis is that, instead of a child’s mind consisting of certain

key aspect of the enactive mind hypothesis is that, instead of a child’s mind consisting of certain innate capabilities which are gradually given rein, the mind is an “active mind that sets out to make sense of the social environment and that changes itself as a result of this interaction” (ibid., p. 348, our italics). Unlike the disembodied cognition associated with computational models, with an active mind, cognition and action are inextricably linked in the typically developing child but

an active mind, cognition and action are inextricably linked in the typically developing child but apparently not in the autistic child. The alternative framework is centered around: a different set of social cognitive phenomena, for example people’s predispositions to orient to salient social stimuli, to naturally seek to impose social meaning on what they see and hear, to differentiate what is relevant from what is not, and to be intrinsically motivated to solve a social problem once such a

relevant from what is not, and to be intrinsically motivated to solve a social problem once such a problem is identified. [Their framework] is called EM in order to highlight the central role of motivational predispositions to respond to social stimuli and a developmental process in which social cognition results from social action. (ibid., pp. 347/348, our italics)

Enhanced Perceptual Functioning Model Laurent Mottron and his team have proposed a perception-based model of autism described as the “enhanced perceptual functioning model” along with a set of eight principles of autistic perception (Mottron and Burack 2001; Mottron et al. 2006). The latest version of the enhanced perceptual functioning model takes account of the researchers’ realization “that a primary superiority in perceptual analysis could possibly underlie both local biases in

“that a primary superiority in perceptual analysis could possibly underlie both local biases in hierarchical perception and construction, and exceptionally accurate reproduction of surface properties of the world, like 3-D perspective or absolute pitch values in savants” (Mottron et al. 2006, p. 28, authors’ italics). In developing their model, Mottron et al. retained the concept of local bias from the weak central coherence theory (attributing it to superior perceptual functioning in autism)

the weak central coherence theory (attributing it to superior perceptual functioning in autism) but regarding it as “mandatory” in autism in opposition to Frith and Happé’s view of local bias as a cognitive preference.

Future Directions After many decades of research to explain cognition in autism, there is still no definitive explanation or theory. But some theory does explain aspects of autism and has led to an improved understanding of what it is to be autistic and what needs to be done to support autistic individuals in the community. The vast majority of research into autism continues to be focused on what increasingly appears to be a fruitless search for what causes it. Such research is also

on what increasingly appears to be a fruitless search for what causes it. Such research is also potentially dangerous given the risks of it leading to susceptibility testing, genetic engineering, or even full-blown eugenics. Other researchers consider that the primary focus of autism research should be on identifying interventions, and other means of support, to improve the well-being of autistic individuals and their lived experience in a non-autistic world. There is a distinct tendency for

individuals and their lived experience in a non-autistic world. There is a distinct tendency for researchers involved in the development of interventions in autism to base their work solely on empirical evidence rather than on evidence and theory (Chown 2015). It would seem entirely appropriate for intervention researchers to take account of theories which provide an understanding of autistic cognition in connection with both the design and implementation of their interventions (as is the case

in connection with both the design and implementation of their interventions (as is the case with the highly successful Social Stories™intervention) or at least explain why they have not done so. Researchers in the intervention field would do well to consider theory and either explicitly include some form of theoretical justification analysis in their reporting alongside empirical findings or explain why their proposals require no theoretical justification. Anecdotal evidence suggests that

explain why their proposals require no theoretical justification. Anecdotal evidence suggests that research into autism causation does not appear to have been as severely affected by austerity measures as has other autism research and diagnosis and support for autistic people. (A London Borough recently attempted to place a limit on the number of persons permitted to receive a diagnosis of autism in their part of the capital in order to meet budget cuts.) Given the commercial and other

autism in their part of the capital in order to meet budget cuts.) Given the commercial and other considerations that drive much autism research, one can only hope that governments will take increasing heed of the full range of views on this subject, and a leading role, so that research priorities cease to be so biased.

Raising children and providing them with protection and care in order to ensure their healthy social, emotional, cognitive, and physical development into adulthood are a critical task of parents. As parenting is known to impact children’s developmental outcomes, examining parenting in the context of autism is an important focus of inquiry.

Historical Background Little remains known about the lives of adults with autism (Howlin and Magiati 2017), including parenting children. As parenting practices and parenting style are related to the developmental and psychological outcomes of children (Belsky and de Haan 2011), being autistic or having autism traits has the potential to influence parenting. Autism is associated with difficulties in social communication and social reciprocity, including social-emotional difficulties (American

in social communication and social reciprocity, including social-emotional difficulties (American Psychiatric Association (APA) 2013) which can impact the quality of social interactions. Social-cognitive difficulties are also common, including difficulties in taking another’s mental perspective, important in sensitive and responsive parenting (e.g., Laranjo et al. 2008). Furthermore, mental health, specifically depression and anxiety, can influence parenting practices (Berg-Nielsen et al.

health, specifically depression and anxiety, can influence parenting practices (Berg-Nielsen et al. 2002), with individuals with autism and higher autism traits commonly reporting poorer mental health (Ingersoll and Hambrick 2011; Sucksmith et al. 2011). Good parenting also involves consistency and routine, with predictability being important in giving children a sense of control, a feature also preferred by those with autism. Thus, much of what is known about both autism and parenting suggests

by those with autism. Thus, much of what is known about both autism and parenting suggests this relationship is an important one to examine, particularly with regard to identifying parenting difficulties and needs that may require support. This understanding can lead to the development of methods to enhance and support parenting outcomes.

Current Knowledge Only three studies to date have examined parenting with autism. Studying parents with subthreshold traits of autism (as measured by the Autism Spectrum Quotient, AQ; Baron-Cohen et al. 2001), van Steijn et al. (2013) found that mothers with high autism traits use a more permissive parenting style (which is high in warmth but low in control, unlike the optimal authoritative parenting style which is high in both) with their typically developing (TD) child compared to their

parenting style which is high in both) with their typically developing (TD) child compared to their child with a diagnosis of autism spectrum disorder (ASD). Interestingly, in fathers, it was their ADHD characteristics, not autism traits, that were related to difficulties in parenting of both their affected and unaffected children. Lau et al. (2016) examined parenting efficacy (rather than parenting style) in mothers and fathers with and without an ASD diagnosis who were raising a child with

style) in mothers and fathers with and without an ASD diagnosis who were raising a child with ASD. They found that while fathers with a diagnosis of ASD reported being less efficacious in their parenting (as measured by the Parenting Sense of Competence scale, PSOC; Johnston and Mash 1989), mothers who had a diagnosis did not differ in their parenting efficacy from mothers without a diagnosis. However, children with a diagnosis of ASD may be difficult to parent because of their characteristics,

children with a diagnosis of ASD may be difficult to parent because of their characteristics, and, as such, it is impossible to determine (in a cross-sectional study) whether any difficulties in parenting competence observed are due to the child’s or the parent’s autism traits.

Dissanayake et al. (2019) examined whether autism traits (as measured by the AQ) are uniquely related to parenting a TD child, over and above other demographic and psychological factors, including the parent’s own parenting history. While all parents had a child with ASD, their parenting was examined in relation to the TD child they were raising. None of the demographic variables, nor parenting history, played a role in the relationship between autism traits and the parenting variables

history, played a role in the relationship between autism traits and the parenting variables studied. However, parental well-being, as measured by the Depression Anxiety and Stress Scale (DASS-21; Lovibond and Lovibond 1995), did contribute to parenting outcomes; thus although a relationship was found between autism traits and satisfaction in the parenting role, with higher traits associated with lower parenting satisfaction, when psychological well-being was accounted for, autism traits did

lower parenting satisfaction, when psychological well-being was accounted for, autism traits did not contribute uniquely to the model. Moreover, autism traits were not related to parenting efficacy. Given that the majority of participants in this study were mothers, this latter finding is consistent with Lau et al.’s (2016) finding that mothers with an ASD diagnosis did not differ in their parenting efficacy from mothers without ASD, although it should be noted that unlike in Dissanayake et

efficacy from mothers without ASD, although it should be noted that unlike in Dissanayake et al., their findings relate to parenting a child with ASD.

Autism traits were found to be associated with an increase in overall parenting difficulties, as measured by a Parenting Needs Questionnaire (PNQ) developed by the study authors (Dissanayake et al. 2019). Psychological well-being was also related to parenting difficulties. However, autism traits were also uniquely related to parenting difficulties in all but two parenting domains. Parents with high autism traits reported more difficulties in the subscales of Modeling/Teaching Behaviors,

with high autism traits reported more difficulties in the subscales of Modeling/Teaching Behaviors, Understanding Needs, Emotion Control, Attention/Connection, Spontaneity, and Sensory Issues compared to parents with low autism traits. Parent with high traits reported moderate difficulties regulating their emotion during parenting situations, and connecting with, or maintaining attention on their child during interactions. They reported more difficulties in modeling and teaching their child

child during interactions. They reported more difficulties in modeling and teaching their child behaviors, understanding the needs of their child, being spontaneous in parenting situations, and coping with sensory stimuli around their child. As the development of the subscales of the PNQ was informed by parents who had ASD, it is perhaps unsurprising that those with high autism traits found difficulties in each of these areas. There were, however, no differences observed in the Affection

difficulties in each of these areas. There were, however, no differences observed in the Affection Subscale of the PNQ, indicating that parents with high autism traits do not find it more difficult giving and receiving affection from their child. This finding accords with research findings that both younger and older children with ASD are attached to their parents in the same way as are TD children (Chandler and Dissanayake 2014; Dissanayake and Crossley 1996; Dissanayake and Sigman 2000). The

(Chandler and Dissanayake 2014; Dissanayake and Crossley 1996; Dissanayake and Sigman 2000). The Danger Awareness Subscale also failed to differentiate parents with high and low traits, suggesting that these parents do not have difficulty anticipating dangers on behalf of their TD child. Showing and receiving affection and keeping children out of harm’s way are critical aspects of parenting which appear to not be related to the presence of high autism traits.

Future Directions The studies reviewed above on parenting children with and without autism when parents have either a diagnosis of ASD of high autism traits themselves have identified specific aspects of parenting that may benefit from targeted support which can assist these parents prosper in their parenting role. It is likely that the wealth of available parenting resources will not address the specific needs of parents with high autism traits as the majority of these resources are developed

specific needs of parents with high autism traits as the majority of these resources are developed for parents without additional needs, although there are available resources for parents raising children with additional needs. Thus, just as there is a paucity of research on the parents with ASD/high autism traits, there is a lack of parenting resources for them. However, a first step to providing information and resources needed for these parents from which they may benefit is available here:

information and resources needed for these parents from which they may benefit is available here: https://www.amaze.org.au/2017/05/ceo-proud-of-our-new-parenting-skills-guide/ The few studies to date on parenting with ASD/autism traits have been informed by the parenting literature, where research has been undertaken within the general population. Hence, the specific strengths that autistic parents may bring into their parenting role have not been a focus of study and should be examined in

may bring into their parenting role have not been a focus of study and should be examined in future research. It is also important to focus on the outcomes of the children who are the target of parenting, be they autistic or otherwise. Given the findings presented here that autism traits are related to both parenting abilities and difficulties, it is necessary to examine the positive and/or negative impacts, if any, on children’s developmental outcomes.

Synonyms Pragmatic communication disorder; Pragmatic language disorder; Pragmatic language impairment; Semantic pragmatic deficit disorder; Semantic pragmatic deficit syndrome; Semantic pragmatic language disorder; Social pragmatic communication disorder

Short Description or Definition In more than 70 years since its first clinical descriptions, conceptualizing autism as a diagnostic category has been an ever-evolving and challenging process due to the broad heterogeneity that exists within this disorder. With the more narrow and rigid diagnostic criteria for autism spectrum disorder (ASD), as described in the DSM-5 (APA 2013), a new diagnostic classification was introduced in an attempt to account for individuals with marked impairments in

classification was introduced in an attempt to account for individuals with marked impairments in social and communicative abilities but who fail to meet DSM-5 criteria for ASD: social communication disorder (SCD). SCD, sometimes referred to as social pragmatic communication disorder, is defined by primary impairments in the pragmatic aspects of verbal and nonverbal social communication. Specifically, those with SCD will present with significant difficulties interpreting meaning from social

those with SCD will present with significant difficulties interpreting meaning from social cues and adapting their communicative efforts to match social contexts (e.g. following conversation rules, modifying language for different situations or audiences, inferring meaning based on context).

Categorization Clinical reports on disorders of pragmatic communication were first published in the 1980s (Bishop and Rosenbloom 1987; Rapin and Allen 19

autobiographical writings of individuals with a neurodevelopmental disorder. Some researchers have compared the autobiographical writings of adults with autism with those of adults with schizophrenia (see Happé 1991, for a comparison of Grandin’s autobiographical writing with that of a female with schizophrenia), but these comparisons are limited. The selection of a suitable comparison group is also confounded by the lack of interest in works of fiction that is commonly noted in individuals with

confounded by the lack of interest in works of fiction that is commonly noted in individuals with autism (Happé 1991). As this group may not read fictional works to the same degree as typical adults, this may influence the content and structure of their autobiographical writings. These difficulties mean that it is problematic to draw inferences on the typicality or atypicality of the autobiographical writings of this group, or to determine how they are similar to or different from the writings of

writings of this group, or to determine how they are similar to or different from the writings of individuals without autism. The selection of a range of appropriate comparison works is crucial for future research in this area.

Another important direction for future research is to establish the degree to which the autobiographical writings of individuals with autism are the work of the individual themselves. Published autobiographical writings (in particular, life stories, memoirs, and autobiographies) are often subject to high levels of editing or rewriting by publishers, editors, or cowriters. Indeed, Temple Grandin’s autobiographical work Emergence was cowritten with a children’s writer who rewrote and formatted

autobiographical work Emergence was cowritten with a children’s writer who rewrote and formatted sections of the book and structured it to make it easier to read. This significantly limits the conclusions that can be drawn from the autobiographical text itself. Indeed, Grandin’s autobiographical writing My Experiences as an Autistic Child is markedly different to Emergence and displays several characteristics that are typical of an adult on the autism spectrum (e.g., switching between topics,

that are typical of an adult on the autism spectrum (e.g., switching between topics, failing to provide the reader with pertinent background knowledge regarding a topic). Analysis of writings that clearly delineate the text composed by individuals with autism and that inserted or changed by editors or cowriters is important for future research, as is the analysis of online writings, which tend to be solely the work of the individual with autism (without subsequent editing).

Future research could also consider gender differences in the autobiographical writings of individuals with autism. Despite a higher number of males than females being diagnosed with autism, it appears that more women with autism express themselves in writing and publish their work. Future work should therefore aim to compare the autobiographical writings of males and females with autism, to ascertain whether there are similarities or differences in the expressions of these writings.

A final point to note regarding the autobiographical writings of individuals with autism concerns their recall of personal experiences. Research on autobiographical memories has shown that memories of personal events are not veridical representations of the past – they are reconstructions of experiences. As such, doubts can be raised concerning the accuracy of the events and experiences referred to in the autobiographical writings of individuals with (and without) autism. This is an important

to in the autobiographical writings of individuals with (and without) autism. This is an important factor to take into account when evaluating, and drawing inferences from, the autobiographical writings of individuals with autism (as well as the writings of typical comparison adults).

Autonomic Nervous System Jonathan Kopel Texas Tech University Health Sciences Center (TTUHSC), Lubbock, TX, USA  Synonyms Central nervous system (CNS); Peripheral nervous system (PNS)  Definition The autonomic nervous system (ANS) coordinates the body’s fight or flight and rest and digest response through the central and peripheral nervous systems (Rees 2014). Specifically, the ANS maintains homeostasis and adapts physiolog-ical, psychological, and behavioral responses to external stressors

and adapts physiolog-ical, psychological, and behavioral responses to external stressors (Klusek et al. 2015; Rees 2014). Dysfunction of the ANS increases the risk of numerous psychological disorders including panic disorder, anxiety, post-traumatic stress disorder (PTSD), and schizophrenia (Klusek et al. 2015). Several studies showed Autistic Spectrum Disorder (ASD) children revealed diminished parasympathetic response, autonomic response, and vagal tone (Benevides and Lane 2013; Järvinen et

parasympathetic response, autonomic response, and vagal tone (Benevides and Lane 2013; Järvinen et al. 2015; Klusek et al. 2015).

In addition, ASD children showed hyperarousal and high sensitivity to facial expressions, particularly those with fearful, happy, or no emotion (Järvinen et al. 2015). However, the ANS dysfunctions among ASD patients occurs only during goal-directed activities and disappears under normal physiological conditions (Benevides and Lane 2013). As a result, further investigation is needed to elucidate the coordinated interactions between sympathetic and parasympathetic systems, and the behavioral

the coordinated interactions between sympathetic and parasympathetic systems, and the behavioral and physiological differences seen in ASD patients.

Autonomous Living ▶Independent Living  Autonomy ▶Self-Advocacy  Autosomal Recessive Disorder ▶Gangliosidoses  AUTS18 ▶CHD8  Aventyl Hydrochloride ▶Nortriptyline  Aversive/Nonaversive Interventions Michael D. Powers The Center for Children with Special Needs, Glastonbury, CT, USA  Definition Aversive and nonaversive interventions refer as much to a dynamic yet functional definition of both terms as to a set of intervention procedures. From a technical point of view, an aversive intervention

as to a set of intervention procedures. From a technical point of view, an aversive intervention involves the application of an aversive stimulus. This would include a noxious event that serves as a punisher when it follows behavior, one that evokes a behavior that has terminated the noxious stimulus in past circumstances, or one that functions as a reinforcer when it is removed after the occurrence of a behavior (Cooper et al. 2020). A nonaversive intervention involves the application of

of a behavior (Cooper et al. 2020). A nonaversive intervention involves the application of positive reinforcement and/or extinction contingencies as a consequence to a behavior or alteration of the intensity, duration, or magnitude of a behavior contingent upon the removal or presentation of an antecedent stimulus.

Historical Background While treatment in autism has, over the years, had many controversies, perhaps none has been so heated as the discussion of the viability and appropriateness of aversive and nonaversive pro-cedures to treat a variety of problems common to the disorder (and to those with other neurodevelopmental disorders as well). These controversies have pitted, in somewhat of a dichotomous fashion, empirical science against social validity. The result was at once unfortunate and the

fashion, empirical science against social validity. The result was at once unfortunate and the stimulus for a paradigmatic shift. When in its relative infancy, the science of the experimental analysis of behavior served a very important function: to prove that even the most recalcitrant of human behaviors are subject to the laws of learning and can be improved upon. For generations of clinicians raised on the belief that change was only possible in small increments for those severely affected

raised on the belief that change was only possible in small increments for those severely affected by autism and then only through rather drastic psychopharmacologic interventions, the opportunity to demonstrate progress in reducing self-injury, aggression, and other destructive behaviors as well as to increase prosocial, adaptive behavior was a breakthrough. Applications of more basic operant conditioning principles such as positive and negative reinforcement, extinction, and pun-ishment were

principles such as positive and negative reinforcement, extinction, and pun-ishment were tactics of choice during this period. Indeed, clinical significance was often defined only in terms of the magnitude of behavior reduc-tion (the end product) but rarely so by the means of reduction.

As the 1960s progressed through to the late 1970s, however, means of intervention appropriately became a more prominent consideration. The seminal work on social valid-ity by Kazdin (1977) and Wolf (1978) reshaped the narrative around three key points: not only must the outcome of intervention be socially valid but also the target of intervention (behavior to be changed) and also the means to achieve that outcome. As a construct, social validity imposes the requirement that all factors be

achieve that outcome. As a construct, social validity imposes the requirement that all factors be considered before, during, and after treatment. This demand served several important functions. It posed the important question, “socially valid for whom?” Were targets, procedures, and outcomes socially valid for the client, the family, and institutionally based caregivers? Social validity also raised the question of relativity. At different points in time, for different clients, and under

raised the question of relativity. At different points in time, for different clients, and under particular circumstances, a treatment procedure or outcome might or might not be acceptable. But very importantly, at its base, the question of social validity also raised the issue of the generalizability of behavior change. While behavior analysis had evolved very good technologies of generalization and maintenance (Horner et al. 1988), things did not always work out as planned. So-called

and maintenance (Horner et al. 1988), things did not always work out as planned. So-called treatment failures continued to occur, often under the contingencies of more remote or diverse (and sometimes less well-understood) events. By imposing the demand to assess for social validity, interventionists had a tool to begin to predict potential func-tional relationships between change agents and the consumers of change and to begin to modify those contingencies that might interfere with long-term

consumers of change and to begin to modify those contingencies that might interfere with long-term maintenance and generalization.

Within the span of a few years, however, a number of flash point events occurred that sharpened the issues concerning treatment of those whose autism placed themselves, and others, at the greatest risk. Highly publicized reports of the deaths of clients in the care of otherwise well-known residential programs following the use of contingent aversive procedures (e.g., white noise) changed the conversation from one of science alone to a discussion of human dignity and the right to effective

conversation from one of science alone to a discussion of human dignity and the right to effective treatment. Suffice it to say that while at times mean-spirited, personal, and derogatory, the power of the objectivity of science won out. Indeed, not only did the National Institutes of Health fund a number of collaborative research centers with the mandate to investigate and develop effective interventions that were non-aversive, but the NIH later convened a consensus conference (National

interventions that were non-aversive, but the NIH later convened a consensus conference (National Institutes of Health 1991) in order to issue guidelines for the use of behavior reduction procedures (including punishment strategies) when treating destructive behavior in those with developmental disabilities. The efforts of established collaborative research centers, other scientists working in basic and applied settings, and the general understanding of the effects (and negative effects) of

basic and applied settings, and the general understanding of the effects (and negative effects) of punishment have led over the past 20 years to a highly developed, evolving, evidence-based technology of behavior change based upon the use of antecedent and consequent control procedures that do not involve the use of aversive stimuli. To be certain, the controversy has not ended entirely, as those who empirically demonstrate the effective use of punishment pro-cedures as a component of a

those who empirically demonstrate the effective use of punishment pro-cedures as a component of a comprehensive treatment package would argue (Axelrod 1990). But, as importantly, the exceptional science being developed to understand the often complex func-tional motivators behind severe behavior con-tinues as well and is especially visible in the efforts of those promoting positive behavior sup-port initiatives in public schools.

Rationale or Underlying Theory Given the extensive research base for both aversive and nonaversive interventions, it is reasonable to conclude that considerations about each are evidence-based. The important consider-ations, however, lie in the issue of negative effects and generalizability of effects. Both sets of pro-cedures are based on the principles of operant conditioning earlier described by Skinner, with many decades of subsequent and substantive empirical extensions of that work. What

by Skinner, with many decades of subsequent and substantive empirical extensions of that work. What has evolved over the years is a toolbox of intervention strategies, many working best as part of multi-component procedures. While there may well be occasions for which a punishment procedure – in combination with positive reinforcement proce-dures designed to increase functionally equiva-lent, alternative prosocial behavior – is the least restrictive intervention option, intervention based on

prosocial behavior – is the least restrictive intervention option, intervention based on punishment alone is rarely advised. Nonaversive interventions are broadly orga-nized around antecedent strategies (those that occur before the problematic behavior is emitted), with the intention of altering the stimulus control and reinforcing value of the existing antecedent “triggers” for the behavior. Consequent proce-dures are those delivered after behavior has been demonstrated. They can include

Consequent proce-dures are those delivered after behavior has been demonstrated. They can include reinforcement-based procedures, extinction, and variants of interruption and redirection. In contrast, aversive interventions involve the application of an aver-sive or unpleasant stimulus immediately follow-ing the problem behavior, designed to discourage future occurrence of the behavior. In all cases, however, whether an intervention is aversive or reinforcing to a client is a functional

all cases, however, whether an intervention is aversive or reinforcing to a client is a functional question. If the application of a stimulus immediately following demonstration of a specific behavior increases the probability of that behavior occur-ring, the stimulus was reinforcing. If presentation of the stimulus immediately following the behavior reduces the likelihood of behavior reoccurrence, then the stimulus was aversive. Referring back to the discussion of social validity earlier, what

then the stimulus was aversive. Referring back to the discussion of social validity earlier, what is aversive to one person may be reinforcing to another. The only solution is to assess functionally before and during treatment implementation. Ultimately, the rationale about which interven-tion strategies to employ in a particular case is a functional one, clarified by a thorough functional behavior assessment/analysis and subjected to rigorous outcome evaluation. In the final analysis,

behavior assessment/analysis and subjected to rigorous outcome evaluation. In the final analysis, intervention must be effective, that is, it must be successful in its outcome and have minimal or no negative effects associated with it. Treatment strategies that are socially valid and empirically based will best serve the interests of persons with autism and related neurodevelopmental disorders.

Goals and Objectives The selection of intervention strategies is based on behavioral function, not form. Function can be described in several ways. For example, behavior can serve to access positive reinforcement in the form of social attention or access to preferred materials. The behavior can be functionally rein-forced by its ability to terminate an aversive or unpleasant event (negative reinforcement). These functions can be observed in the presence of others or when the client is alone.

These functions can be observed in the presence of others or when the client is alone. In this latter case, we suggest that the behavior can be maintained by the positive or negative reinforcing contingencies of sensory stimuli impinging on the client. In all cases, the stated goal of intervention should be to improve the behavior of the person with autism by teaching appropriate replacement skills while simultaneously reducing or eliminating the behavior that is problematic or that interferes

while simultaneously reducing or eliminating the behavior that is problematic or that interferes with more adaptive functioning. Specific procedures to accomplish this are discussed below.

Treatment Participants Treatment procedures for any given client are selected based upon the results of the functional assessment/analysis but may be modified to address the specific target behaviors selected, the learning history (history of reinforcement) of the client with the particular behavior, and the avail-ability of resources and competencies of intervenors. Consideration is also given to such factors as severity, duration, pervasiveness, and frequency of the target behavior when

to such factors as severity, duration, pervasiveness, and frequency of the target behavior when determining priorities for intervention.

Treatment Procedures Treatment procedures for nonaversive interven-tions can be broadly divided into two groups: antecedent interventions that occur prior to the behavior and consequent procedures that are implemented after the behavior has been emitted. Both seek to reduce the likelihood of behavioral expression in the future by emphasizing the use of positive reinforcement procedures as a key or collateral component of the treatment package. Most importantly, all treatment should be preceded

collateral component of the treatment package. Most importantly, all treatment should be preceded by a thorough functional behavior assessment or analysis in order to determine which stimuli in the environment exert control over the target behavior. Antecedent procedures include errorless learn-ing, whereby the student is prompted to the cor-rect response immediately after the presentation of the request; interspersing mastered or easy tasks with difficult tasks in teaching (Weber and Thorpe

the request; interspersing mastered or easy tasks with difficult tasks in teaching (Weber and Thorpe 1992); the use of choice in the selection of tasks and reinforcers (Dyer et al. 1990); reducing the information-processing demands of the task or providing an alternative mode of task presenta-tion; use of a high-probability request sequence (Zuluaga and Normand 2008); functional commu-nication training (Carr and Durand 1985); stimu-lus change procedures, whereby a novel stimulus that is not an

(Carr and Durand 1985); stimu-lus change procedures, whereby a novel stimulus that is not an antecedent or a consequence to the behavior is interjected into a behavioral sequence, interrupting the response-reinforcer relationship (Carr et al. 1990); and environmental modifica-tions such as use of visual schedules, curriculum adjustment, etc. (Flannery and Horner 1994; Kern and Dunlap 1998). Consequent procedures with demonstrated efficacy include positive reinforcement, differen-tial

Consequent procedures with demonstrated efficacy include positive reinforcement, differen-tial reinforcement, and its variants (differential reinforcement of other, incompatible, high rates or alternative behavior); response interruption and redirection (Underwood et al. 1989); extinction (Lerman and Iwata 1996); and noncontingent reinforcement, whereby reinforcing stimuli are provided to a client independent of the client’s behavior (Carr et al. 2009). Aversive stimuli are noxious events that

independent of the client’s behavior (Carr et al. 2009). Aversive stimuli are noxious events that serve as punishers when following a behavior, evoke a behavior that has terminated the noxious stimulus in past circumstances, or function as a reinforcer when removed after the occurrence of a behavior (Cooper et al. 2020). While the function of an aversive stimulus is always to cause the cessation of a behavior, its forms are virtually limitless (Repp and Singh 1990) and have included smelling

of a behavior, its forms are virtually limitless (Repp and Singh 1990) and have included smelling aromatic ammonia, contingent water mist to the face, the application of “white noise,” and electric shock. It is noteworthy that while the NIH consen-sus conference clearly emphasized the importance of using treatment procedures based on positive behavioral supports, it also provided clear guide-lines for the use of punishment procedures when they might be deemed clinically necessary.

Efficacy Information The efficacy of antecedent strategies to treat behavior problems has been well documented in the research literature, and several in particular have been identified as evidence-based proce-dures (Cooper et al. 2020; Powers et al. 2011). It is important to remember, however, that the use of an antecedent (or any other) strategy does not guarantee success. Rather, the use of the proce-dure must be based on the results of the functional behavior assessment/functional analysis,

proce-dure must be based on the results of the functional behavior assessment/functional analysis, must be implemented with fidelity, and must be evaluated accurately and objectively. Violation of any of these tenets can (and likely will) reduce the effi-cacy and efficiency of the correctly chosen treat-ment strategy.

Outcome Measurement Objective and reliable measurement of treatment effects and outcomes is essential to the correct use of any procedure designed to increase desir-able behavior or to reduce problem behavior. Fortunately, the use of single-subject experi-mental designs (SSEDs) has predominated in the literature (Kazdin 1982), establishing a robust arsenal of potential designs for outcome measure-ment. When well used, SSEDs provide excellent internal and external validity, support the

measure-ment. When well used, SSEDs provide excellent internal and external validity, support the devel-opment of reliable observations, and ultimately contribute to the serial replication of findings. To this latter point, the aggregation of large numbers of individual studies, each with a small subject pool, can generate strong findings of efficacy (Reichow et al. 2011).

Qualifications of Treatment Providers While certainly effective when used correctly, the technology of intervention requires training in the principles and strategies of applied behavior analysis. Obviously, with behavior problems of greater significance (e.g., where personal safety of the client or others is at risk and where health status can/may be compromised), the demand for greater levels of sophistication and competency is critical. At a minimum, supervi-sion of assessment and treatment

sophistication and competency is critical. At a minimum, supervi-sion of assessment and treatment protocols by an individual with Board Certification as a Behavior Analyst (BCBA) or by a clinician with equivalent training and experience would be appropriate. In cases where more extraordinary interventions are necessary or where the risk of harm is greater, it is strongly advisable to have all clinical aspects peer reviewed and vetted by a human rights committee.

AVLT ▶Rey Auditory Verbal Learning Test (Rey AVLT)  Avoidant Personality Disorder Daniel F. Becker Department of Psychiatry, University of California, San Francisco, USA  Synonyms Anxious Personality Disorder  Short Description or Definition In the most recent DSM revision, the DSM, Fifth Edition (DSM-5; American Psychiatric Association [APA] 2013), AVPD is classified as a personality disorder and is described as “a pervasive pattern of social inhibition, feelings of inadequacy, and

disorder and is described as “a pervasive pattern of social inhibition, feelings of inadequacy, and hypersensitivity to negative eval-uation that begins by early adulthood and is pre-sent in a variety of contexts” (p. 673). As for all personality disorders, “this pattern of inner expe-rience and behavior. . . deviates markedly from the expectations of the individual’s culture, is pervasive and inflexible,. . . is stable over time, and leads to distress or impairment” (p. 645).

Categorization As indicated above, AVPD is classified within the Personality Disorders section in DSM-5. Based largely on an earlier, theoretically derived con-struct (Millon 1981), AVPD first appeared as a diagnostic entity in DSM, Third Edition (DSM-III; APA 1980). This category grew from a trifur-cation of the DSM, Second Edition (DSM-II; APA 1968) diagnosis, schizoid personality – which described individuals with “shyness, over-sensitivity, seclusiveness, avoidance of close or competitive

individuals with “shyness, over-sensitivity, seclusiveness, avoidance of close or competitive relationships, and often eccentricity” (p. 42). The broader DSM-II schizoid personality construct was, in DSM-III, subdivided into a more narrowly defined schizoid personality disorder, as well as schizotypal and avoidant personality disorders. Schizotypal personality disorder was thought to describe those individuals who had previously been diagnosed with borderline schizophrenia and encompassed the

individuals who had previously been diagnosed with borderline schizophrenia and encompassed the eccentricity noted in the DSM-II description. The distinction between DSM-III avoidant and schizoid personal-ity disorders was construed as centering on whether or not the individual had the motivation and capacity for emotional involvement with others (APA 1980; Millon 1981). Beginning with DSM-III, personality disorders were placed on axis II within a recommended “multiaxial” approach to

DSM-III, personality disorders were placed on axis II within a recommended “multiaxial” approach to psychiatric diagnosis; axis II encompassed specific developmental dis-orders as well as personality disorders and was felt to be useful in ensuring that “consideration is given to the possible presence of disorders that are frequently overlooked when attention is directly toward the usually more florid Axis I disorder” (p. 23). Beginning with DSM, Third Edition, Revised (DSM-III-R; APA 1987), AVPD

Axis I disorder” (p. 23). Beginning with DSM, Third Edition, Revised (DSM-III-R; APA 1987), AVPD was placed in the cluster C subcategory of per-sonality disorders, which are characterized by “anxious or fearful” (p. 337) clinical presenta-tions. DSM-III-R aligned AVPD with the clinical concept of “phobic character” (p. 429) and no longer suggested that it needed to be mutually exclusive with schizoid personality disorder. In DSM, Fourth Edition (DSM-IV, APA 1994), AVPD remained in cluster C,

personality disorder. In DSM, Fourth Edition (DSM-IV, APA 1994), AVPD remained in cluster C, along with depen-dent and obsessive-compulsive personality disor-ders, as it does now in DSM-5. It is worth noting, however, that the multiaxial system has been eliminated in the current diagnostic manual – and personality disorders are now classified alongside all other relevant diagnoses. Although initially formulated in DSM-III as a monothetic criterion set – requiring, for the diag-nosis, all five

formulated in DSM-III as a monothetic criterion set – requiring, for the diag-nosis, all five possible symptom criteria – subse-quent revisions have constructed AVPD as a polythetic set, requiring any four of seven possi-ble criteria. Each successive revision – from DSM-III to DSM-III-R, and from DSM-III-R to DSM-IV – involved adding, deleting, and rewording various criteria. These changes have been based, in part, on empirical evidence (Baillie and Lampe 1998; Becker et al. 2009; Grilo 2004;

been based, in part, on empirical evidence (Baillie and Lampe 1998; Becker et al. 2009; Grilo 2004; Hummelen et al. 2006). No further changes were made to the AVPD criteria in the transition from DSM-IV to DSM-5.

Epidemiology Investigations in clinical samples have shown AVPD to be among the most frequently diagnosed personality disorders (Alnæs and Torgersen 1988; Stuart et al. 1998). Although DSM-III and DSM-III-R had indicated only that AVPD is “apparently common” (APA 1980, p. 323, 1987, p. 352) in the general population, and DSM-IV stated that the general prevalence of this disorder is between 0.5% and 1.0% (APA 1994), DSM-5 cited a prev-alence of 2.4% (APA 2013). However, two large,

between 0.5% and 1.0% (APA 1994), DSM-5 cited a prev-alence of 2.4% (APA 2013). However, two large, community-based studies – using DSM-III-R (Torgersen et al. 2001) and DSM-IV (Ekselius et al. 2001) criteria – both yielded much higher rates of 5.0% and 6.6%, respectively. In the former study, AVPD was more prevalent than any other personality disorder; in the latter study, it was the second most prevalent among these disorders. Ekselius et al. (2001) observed gener-ally that individuals with

prevalent among these disorders. Ekselius et al. (2001) observed gener-ally that individuals with personality disorders more often were younger, were students or unem-ployed, received psychiatric treatment, and lacked social supports.

Natural History, Prognostic Factors, and Outcomes Unfortunately, relatively few studies have directly examined AVPD (Alden et al. 2002). Instead, most have considered AVPD along with other personality disorders – in the service of under-standing personality pathology more broadly or within the context of studying the effects of comorbid AVPD on axis I psychiatric disorders. As a result, relatively little is known about the natural history and progression of AVPD. DSM-5 (APA 2013) notes that

little is known about the natural history and progression of AVPD. DSM-5 (APA 2013) notes that avoidance often begins in childhood with shyness – but that, while shyness in most individuals dissipates with age, those who progress to develop AVPD will often become increasingly shy and avoidant during adolescence and young adulthood. Evalu-ation of the childhood antecedents of AVPD has shown that adults with AVPD – in relation to relevant clinical comparison groups – report poorer athletic

that adults with AVPD – in relation to relevant clinical comparison groups – report poorer athletic performance during childhood and adolescence, less involvement in hobby activ-ities during adolescence, and diminished adoles-cent popularity (Rettew et al. 2003). Personality disorder stability has been shown, in general, to be modest; for AVPD, 2-year remis-sion rates as high as 50% have been reported by the Collaborative Longitudinal Personality Disor-ders Study (Grilo et al. 2004). These

reported by the Collaborative Longitudinal Personality Disor-ders Study (Grilo et al. 2004). These investigators have also suggested that personality disorders are hybrids of traits and symptomatic behaviors, with the former being more stable. The interaction of these elements over time helps to determine diag-nostic stability. For AVPD, the trait-like criteria – which are the most prevalent and stable – include regarding oneself as socially inept, feeling inade-quate compared to others, and

stable – include regarding oneself as socially inept, feeling inade-quate compared to others, and wanting evidence of being liked before making social contact (McGlashan et al. 2005). These observations sug-gest that the course, persistence, and severity of AVPD – as for all personality disorders – depend upon an interaction of personality traits and the individual’s behavioral adaptations to these traits (Lilienfeld 2005). The functional consequences of AVPD are generally significant – having a

traits (Lilienfeld 2005). The functional consequences of AVPD are generally significant – having a more profound effect on psychosocial adaptation than, for instance, major depression (Skodol et al. 2002).

Clinical Expression and Psychopathology In a seminal description of the AVPD construct, Millon (1981) describes four levels of clinical data that may help in the diagnosis: (1) behavioral features (e.g., shyness or timidness, apprehensive-ness or guardedness, touchiness, evasiveness, restraint of emotional expression, and physical underactivity with periodic bursts of fidgeting); (2) self-descriptions or complaints (e.g., feeling anxious or ill-at-ease, viewing others as critical or

or complaints (e.g., feeling anxious or ill-at-ease, viewing others as critical or humiliating, and uncertainty about one’s self-worth); (3) interpersonal coping style (e.g., antic-ipation of censure and derision, minimizing involvements that might reactivate or duplicate past humiliations, and diminishing the importance of interpersonal relationships); and (4) inferred intrapsychic dynamics (e.g., conflict between mis-trust and the desire for affection, tension between derogation by others and

conflict between mis-trust and the desire for affection, tension between derogation by others and self-deprecation, and tension between the surrounding distress and the emptiness within). As noted above, DSM-5 (APA 2013) requires four of seven possible diagnostic criteria:

*   Avoids occupational activities that involve sig-nificant interpersonal contact, because of fears of criticism, disapproval, or rejection.
*   Is unwilling to get involved with people unless certain of being liked. *   Shows restraint within intimate relationships because of the fear of being shamed or ridiculed.
*   Is preoccupied with being criticized or rejected in social situations. *   Is inhibited in new interpersonal situations because of feelings of inadequacy.

*   Views self as socially inept, personally unap-pealing, or inferior to others.
*   Is unusually reluctant to take personal risks or to engage in any new activities because they may prove embarrassing.

Given the polythetic nature of this and other DSM-5 personality disorder constructs, psycho-metric studies – especially those demonstrating a simple factor structure and good internal consis-tency – have played a key role in establishing construct validity of AVPD. Overall, such studies have demonstrated high internal consistency and a unidimensional structure for the AVPD criterion set adopted in DSM-IV and maintained in DSM-5 (Becker et al. 2009; Grilo 2004; Hummelen et al. 2006).

Evaluation and Differential Diagnosis Although few data exist regarding the diagnostic process as it relates to AVPD, some evidence has been offered with regard to other personality disorders (Zimmerman and Mattia 1999) or to personality disorders more generally (Zimmerman 1994). Such disorders tend to be diagnosed relatively infrequently within the clinical interview process as compared to when semistructured diagnostic interviews are utilized (Zimmerman and Mattia 1999). This may be due to a

semistructured diagnostic interviews are utilized (Zimmerman and Mattia 1999). This may be due to a general inattention to personality disorder in many clinical settings – or, perhaps, to the polythetic nature of these diagnoses. Although it is therefore preferable that a semistructured diagnostic interview be used in evaluating patients for personality disorders, there is con-siderable variability among such instruments. Another concern about the assessment process is that the diagnosis of

among such instruments. Another concern about the assessment process is that the diagnosis of personality disorders is likely to be biased by the patient’s acute clinical state (Zimmerman 1994). With regard to differential diagnosis, consider-ation should be given especially to social anxiety disorder (social phobia), which is classified as an anxiety disorder in DSM-5. Its essential feature is “a marked. . . fear or anxiety of social situations in which the individual may be scrutinized by

“a marked. . . fear or anxiety of social situations in which the individual may be scrutinized by others” (APA 2013, p. 203); social anxiety disorder is therefore phenomenologically similar to AVPD. Indeed, genetic studies have suggested that there is a common genetic vulnerability underlying both disorders (Reichborn-Kjennerud et al. 2010). Consideration should be given as well to agoraphobia, which is another DSM-5 (APA 2013) anxiety disorder characterized by avoid-ance. Finally, with regard

is another DSM-5 (APA 2013) anxiety disorder characterized by avoid-ance. Finally, with regard to differential diagnosis, some other personality disorders should be considered. These include the other cluster C dis-orders, characterized by anxiety and fearfulness – especially dependent personality disorder, which can similarly be marked by feelings of inade-quacy, sensitivity to criticism, and need for reas-surance – as well as the phenomenologically reminiscent, but somewhat more disabling,

need for reas-surance – as well as the phenomenologically reminiscent, but somewhat more disabling, cluster A conditions: schizoid, schizotypal, and paranoid personality disorders (APA 2013).

Treatment Studies have shown that psychotherapeutic inter-vention is the treatment of choice for personality disorders in general – and that this conclusion holds specifically, as well, for AVPD (Verheul and Herbrink 2007). In particular, psychodynamic and cognitive-behavioral therapies have proven effec-tive – especially as individual outpatient modalities but also in group settings and within structured treatment contexts. There is less evidence in support of pharmacotherapeutic intervention,

treatment contexts. There is less evidence in support of pharmacotherapeutic intervention, although some have suggested treatment with antidepressant medications – such as selective serotonin reuptake inhibitors – based, in part, on the potential relation-ship between AVPD and social anxiety disorder (Deltito and Stam 1989; Kapfhammer and Hippius 1998; Ripoll et al. 2011).

AXCAM ▶CNTN4: Contactin 4  Ayres, A. Jean Winifred Schultz-Krohn Department of Occupational Therapy, San José State University, San José, CA, USA
 Name and Degrees A. Jean Ayres, PhD, OTR, FAOTA. Graduated with a BA in Occupational Therapy from University of Southern California in 1945.
Graduated with an MA in Occupational Therapy from University of Southern California in 1954.
Graduated with a PhD in Educational Psychology from University of Southern California in 1961.

Graduated with a PhD in Educational Psychology from University of Southern California in 1961.
 Major Appointments (Institution, Location, Dates) Faculty member in the Department of Occupa-tional Therapy at the University of Southern California (USC) from 1955 to 1964.

Professor in the Department of Special Education at the USC from 1966 to 1977. Adjunct faculty member in the Department of Occupational Therapy at USC from 1976 to 1984 while running her clinic devoted to serv-ing children with sensory integrative disorders.

Major Honors and Awards Awarded Fellow of the American Occupational Therapy Association (FAOTA). Awarded the Eleanor Clark Slagle lectureship in 1963. Received the highest honor from the American Occupational Therapy Association in 1965, the Award of Merit.
Named as one of the Outstanding Educators of America in 1971. Charter member of the American Occupational Therapy Association Academy of Research.

Honored by the American Occupational Therapy Association in 1988 with the initiation of the award entitled the A. Jean Ayres Award for Theory Development and Application.

Landmark Clinical, Scientific, and Professional Contributions Dr. A. Jean Ayres originated the Ayres Sensory Integration theory. She developed the theory into principles of intervention and assessment instru-ments including the Southern California Sensory Integration Tests (SCSIT) and then revised this instrument as the Sensory Integration and Praxis Tests (SIPT). As an occupational therapist, she introduced the profession to this client-centered, neuroscience-based theory and practice

she introduced the profession to this client-centered, neuroscience-based theory and practice approach to support children with sensory integration dis-orders/sensory processing disorders.

Short Biography Dr. A. Jean Ayres was born in 1920 in Visalia, CA, and reportedly had challenges learning as a young child, particularly processing various types of sensory information. She attended the University of Southern California and successfully com-pleted her BA in Occupational Therapy in 1945, her MA in Occupational Therapy in 1954, and her PhD in Educational Psychology in 1961. She completed her postdoctoral training at University of California, Los Angeles (UCLA), Brain Research

completed her postdoctoral training at University of California, Los Angeles (UCLA), Brain Research Institute working with the leading neu-rophysiologists at that time. Her clinical skills in occupational therapy, with a foundation in the engagement in purposeful activity, and her neuro-science training provided her with the unique perspective to understand how the nervous system can influence functional behaviors. Dr. Ayres had a long history in academia and was a faculty member in the

functional behaviors. Dr. Ayres had a long history in academia and was a faculty member in the Department of Occu-pational Therapy at the University of Southern California (USC) from 1955 to 1964. She then was a professor in the Department of Special Education at the USC from 1966 to 1977. She returned as an adjunct faculty member in the Department of Occupational Therapy at USC from 1976 to 1984 while running her clinic devoted to serving children with sensory integra-tive disorders. Dr.

1984 while running her clinic devoted to serving children with sensory integra-tive disorders. Dr. Ayres’ work as an occupational therapist with children who had learning disabilities and sensory processing challenges served as the impetus for her conceptualization of sensory integrative dysfunc-tions. She encountered individuals who would com-plain of how painful it was to have their hair brushed or to wear specific fabrics. This furthered her research endeavors in the area of sensory

brushed or to wear specific fabrics. This furthered her research endeavors in the area of sensory integration dysfunction and theory development. Her develop-ment of the theory of sensory integration expanded, and her numerous publications, books, and app-roximately 50 scholarly articles provided further evidence of this phenomenon. As a clinician, researcher, and academic, Dr. Ayres recognized the need to establish a mechanism to identify sensory integrative dysfunction and link theory to

the need to establish a mechanism to identify sensory integrative dysfunction and link theory to practice. She developed the Southern California Sensory Integration Tests (SCSIT) in 1972 with intensive training courses on theory, test administration, and interpretation seminars. As the research and theory developed further, Dr. Ayres revised the assessment tool and the Sensory Integration and Praxis Test was published in 1989. As an occupational therapist, Dr. Ayres sought to support children

Test was published in 1989. As an occupational therapist, Dr. Ayres sought to support children and provide intervention directed not only to fostering improved functional skills but to develop an explanation regarding the challenges faced by children with sensory integra-tive disorders. Her scholarship, clinical expertise, and dedication were recognized in several arenas. She was awarded the prestigious Eleanor Clark Sagle lectureship in 1963 by the American Occu-pational Therapy Association.

Eleanor Clark Sagle lectureship in 1963 by the American Occu-pational Therapy Association. In her address, she described the theory and practice of sensory inte-gration and how this unique perspective supports participation in everyday tasks. Her substantial contributions to advance the profession of occu-pational therapy were further recognized when she received the Award of Merit in 1965. This is the highest honor awarded by the American Occupational Therapy Association. In 1971, Dr. A. Jean

is the highest honor awarded by the American Occupational Therapy Association. In 1971, Dr. A. Jean Ayres was named as one of the Out-standing Educators of America. Dr. Ayres was a charter member of the Academy of Research of the American Foundation of Occupational Ther-apy, and in 1988, the A. Jean Ayres Award for Theory Development and Application was established in her honor by the American Foun-dation of Occupational Therapy. Dr. A. Jean Ayres married Franklin Baker in 1969. She died on

Foun-dation of Occupational Therapy. Dr. A. Jean Ayres married Franklin Baker in 1969. She died on December 16, 1988, from com-plications of cancer. Franklin Baker died on September 2, 1989.

Azaleptin ▶Clozapine  Babbling Kelly Macy Department of Communication Sciences, The University of Vermont, Burlington, VT, USA

Definition Babbling can be defined as a type of prelinguistic, non-cry vocalization, which typically emerges by 6 or 7 months of age with repetition of the same consonant vowel (CV) syllable (“ba ba”) (Johnson 2008; Paul 2007). This can also be referred to as canonical babbling (Oller et al. 1998) or reduplicative babbling and is an impor-tant part of the developmental process of emerg-ing speech and language. Utterances produced with full stop consonants such as /p/, /b/, /t/, and /d/ and

and language. Utterances produced with full stop consonants such as /p/, /b/, /t/, and /d/ and vowels are most common at this stage, resulting in utterances such as /baba/ and /dIdI/ (“dee dee”). Variegated babbling, where succes-sive syllables are not identical, begins to appear between 6 and 10 months of age (Paul 2007; Proctor 1989). This consists of a variety of CV and consonant-vowel-consonant (CVC) syllables that are not identical (“pa ta”). By the end of the first year, babbling should

(CVC) syllables that are not identical (“pa ta”). By the end of the first year, babbling should begin to imitate the intonation and prosody of adult speech. This is also referred to as jargon babble (Paul 2007).

Historical Background Research findings from the past several decades on the nature of babbling have documented a shift in the scientific and clinical evidence regarding the connection between babbling and speech and language acquisition. Early literature reported a weak relationship between babbling and early speech development (e.g., Jakobson 1941; Lenneberg 1967). It was not viewed as being composed of linguistic units but rather a biome-chanical action where the infant lacks control over the

of linguistic units but rather a biome-chanical action where the infant lacks control over the sounds produced. This view, known as the motoric hypothesis, asserts that babbling is just a by-product of motor development. There was also a common misconception that babbling ended prior to the emergence of first words. In recent decades, however, there has been a shift to a linguistic hypothesis, which maintains that bab-bling has a neurolinguistic foundation and there is a continuity between

which maintains that bab-bling has a neurolinguistic foundation and there is a continuity between babbling and early speech forms (Petitto et al. 2000; Vihman et al. 1986). This shift in opinion is based on a strong body of research suggesting that babble and speech share phonological characteristics within target lan-guages and within individual children (Whitehurst et al. 1991).

Current Knowledge Progression and presentation of babbling, as well as the acquisition and use of speech and language, can vary greatly among children with autism. It is possible for babbling and other communication milestones to develop normally in this population but then later regress. Approximately 25–30% of children with autism exhibit babbling and begin to say words but then stop speaking between the ages of 15 and 24 months (Johnson et al. 2007). This has been documented by home videos

between the ages of 15 and 24 months (Johnson et al. 2007). This has been documented by home videos of children who were typically developing, children with early-onset autism, and children with regressive-type autism and reported in a study by Dawson and Werner (2005). They found that the regressed children used complex babbling and words significantly more often than the early-onset children did. Furthermore, the children with regressive-type autism used complex babble nearly twice as often as

Furthermore, the children with regressive-type autism used complex babble nearly twice as often as typical children. Certain children who present with develop-mental delays, including those with early-onset autism, may be unusually quiet and make few vocalizations. Others may produce atypical vocal-izations such as humming and grunting, and fail to exhibit the typical canonical and variegated bab-bling within the expected time frames (Johnson 2008). Lack of canonical babbling by 10 months of

within the expected time frames (Johnson 2008). Lack of canonical babbling by 10 months of age has been shown to predict delays in lan-guage development in the second year of life (Oller et al. 1998). Current research with infants who are typically developing and those with developmental delays has supported the continu-ity between babbling and its relationship to pat-terns in early speech (Davis and MacNeilage 1995; Mitchell 1997). Typically developing infants exhibit a back-and-forth type

and MacNeilage 1995; Mitchell 1997). Typically developing infants exhibit a back-and-forth type pattern of babbling and apparent listening that is coordinated with the caregiver’s speech and is similar to the conversational turn-taking that is used by older children (Johnson 2008). Children with autism may continue to vocalize as if they are not aware of the caregiver’s speech, with overlapping vocalizations and lack of eye contact. Parents may report that their child does not seem to recognize

and lack of eye contact. Parents may report that their child does not seem to recognize their voice or notice when they enter or leave the room. At the jargon babble stage near 1 year of age, they may lack inflection and prosody that is common by this stage. Since differences and delays in babbling are frequently found in children with autism, an anal-ysis of the child’s pre-speech vocalizations by a speech-language pathologist may help to identify children who are at risk (Mitchell 1997).

by a speech-language pathologist may help to identify children who are at risk (Mitchell 1997). Children who exhibit a loss of babbling should also be referred for an evaluation, as this is a serious red flag. Hearing loss, delayed motor development, and lack of social interactions may also contribute to delays in babbling. For children who were born prematurely, corrected gestational age (CGA) should be used to compare early developmental milestones related to babbling. A pediatrician can

should be used to compare early developmental milestones related to babbling. A pediatrician can screen children for speech and language delays and may recommend further evaluation by a specialist, such as a speech-language pathologist. Proctor (1989) and Mitchell (1997) have provided instruments and guidelines for assessing vocal development of infants. Stan-dardized evaluation tools, such as the Communica-tion and Symbolic Behavior Scales Developmental Profile (Wetherby and Prizant 1993), and

Communica-tion and Symbolic Behavior Scales Developmental Profile (Wetherby and Prizant 1993), and criterion-referenced assessments such as the Rossetti Infant and Toddler Language Scale (Rossetti 2006) can also be utilized to assess language in the pre-linguistic period. For children who do not follow the expected progression of babbling and demonstrate a delay in speech and language development, early inter-vention which is specifically tailored to the indi-vidual, targets behavior and

early inter-vention which is specifically tailored to the indi-vidual, targets behavior and communication, and involves the parents or primary caregivers is the best treatment. Typically, a speech-language pathologist implements this intervention.

Future Directions Many children who are later diagnosed with autism first present to their pediatrician with delays and differences in speech and language development (Johnson 2008). Still, autism is not typically diagnosed until about 3–5 years of age. Research has shown that early intervention by 2–3 years of age results in more positive outcomes for children with autism (Osterling and Dawson 1994). Since language and communication impairments are part of the diagnostic criteria for autism,

1994). Since language and communication impairments are part of the diagnostic criteria for autism, and babbling is one of the earliest devel-opmental communication milestones which has been shown to be an important initial phase of speech production ability, lack of babbling by the end of the first year or regression of early speech skills should be recognized as a red flag. More studies on the different patterns and progressions of babbling in children with autism spectrum dis-orders would help

patterns and progressions of babbling in children with autism spectrum dis-orders would help professionals to better under-stand the link with later speech and language development and help to support earlier identifi-cation of children who may be at risk.

Babysitter Training Guide for Families with Individuals with ASD Kimberly M. Bean1, Karen Meers2, Barbara A. Cook3 and Ruth Eren2 1Department of Special Education, Center of Excellence on Autism Spectrum Disorders, Southern Connecticut State University, New Haven, CT, USA
2Center of Excellence on Autism Spectrum Disorders, Southern Connecticut State University, New Haven, CT, USA

3Department of Communication Disorders, Center of Excellence on Autism Spectrum Disorders, Southern Connecticut State University, New Haven, CT, USA

Synonyms Caregiver training program  Definition A training program with supplemental informa-tional materials has been developed with strate-gies to support short-term care for individuals with autism spectrum disorders (ASD). This pro-gram, entitled Sit for Autism, was originally designed to inform babysitters by increasing their understanding of young children with ASD and how to best support their needs. However, as the training program began to be implemented, the trainers determined that

their needs. However, as the training program began to be implemented, the trainers determined that birth parents, foster parents, grandparents, and other caregivers can benefit from the information presented. These diverse caregivers could then use the tools pro-vided to assist babysitters in caring for their children with ASD. This entry includes a general description of the program and next steps for implementation. The Sit for Autism 2-h training session includes delivery of factual-based

for implementation. The Sit for Autism 2-h training session includes delivery of factual-based information and hands-on activities. In the initial portion of the training, a PowerPoint presentation is used to share foundational content, including the definition of ASD, strengths of children with ASD, and com-mon social, communication, and behavior charac-teristics of individuals with ASD. Key theories [Theory of Mind (Baron-Cohen 1995)] and chal-lenges exhibited in the realms of behavior and

[Theory of Mind (Baron-Cohen 1995)] and chal-lenges exhibited in the realms of behavior and social communication are explored through con-tent and active engagement of the participants. Along with related content about ASD, targeted evidence-based practices (EBPs) (Wong et al. 2013) are defined and modeled, and a detailed babysitter preparation packet is also provided. Suggestions for implementing the target EBPs in the home and/or community setting are discussed and applied to scenarios

the target EBPs in the home and/or community setting are discussed and applied to scenarios presented by the trainer and participants. Opportunities for the partici-pants to reflect on their personal experiences, ask questions, share strategies, and actively engage in dialogue are available throughout the training. Each participant is given the opportunity to prac-tice using these tools during the training session and benefit from presenter feedback. Participants are given a “Sit Kit” containing

training session and benefit from presenter feedback. Participants are given a “Sit Kit” containing PowerPoint with factual information and explana-tion, written instructions for use of each EBP strategy, Babysitter Sit Preparation guide booklet, and visual supports related to the presented EBPs (visual schedule options, choice board, communi-cation pages, and timer options). A visual timer and instructions on its use are included in each kit. The included “Babysitter Sit Preparation” guide

instructions on its use are included in each kit. The included “Babysitter Sit Preparation” guide booklet is to be completed by the caregiver before leaving their child as a means of sharing with the babysitter or other potential temporary caregivers ways to support and understand their child. The information presented in the guide pro-vides the caregiver with a breakdown of the child’s skills and challenges in social, communi-cation, and behavior and allows for personaliza-tion of strategies

challenges in social, communi-cation, and behavior and allows for personaliza-tion of strategies to utilize during the time of short-term care. Pages referred to as “The Sit Prep Kit” components provide the opportunity to share emergency contact information, medical information, food preferences, the child’s typical schedule, special equipment needed, the bedtime routine, adaptive areas in need of assistance, homework routine, activity preferences, and information about siblings and what the

of assistance, homework routine, activity preferences, and information about siblings and what the child likes to do with the siblings. The final page includes a space to write down the expected schedule of activities for the time of the babysit-ting/temporary care event. At the conclusion of the training, ten tips for success when providing short-term care to an individual with autism are reviewed. These include providing structure; being consistent; using visuals; providing warning time when

These include providing structure; being consistent; using visuals; providing warning time when an activity is over; giving short, clear directions; limiting verbal language; leaving time for the child to answer; being attentive; being under-standing and supportive; and supporting with humility. A final question and answer session concludes the training. Trainer contact informa-tion is provided to the participants for any follow-up they would like to have with the trainer. This Sit for Autism

to the participants for any follow-up they would like to have with the trainer. This Sit for Autism training has been conducted 55 times from 2013 through April 2019. A total of 526 participants from a variety of socioeconomic and ethnic backgrounds throughout the state of Connecticut attended the training. In an effort to expand access of the mate-rials by more families, all of the materials have been translated into Spanish. Translators to sup-port the presenters have attended several

have been translated into Spanish. Translators to sup-port the presenters have attended several sessions, with an exclusive training session in Spanish piloted. “Sit Kits” are offered to participants in electronic format so that parents and caregivers can personalize them and use them on more than one occasion. A Train the Trainer model has been developed to begin to train other professionals in order to reach more families in the state.

Bad Science ▶Pseudoscience  Balovaptan Zachary J. Williams1,2 and James C. McPartland3 1Medical Scientist Training Program, Vanderbilt University School of Medicine, Nashville, TN, USA

2Yale Child Study Center, New Haven, CT, USA 3School of Medicine, Child Study Center, Yale University, New Haven, CT, USA  Synonyms RG7314; RO 5028442; RO-5285119  Definition Balovaptan (previously RG7314) is an investiga-tional drug candidate developed by Hoffman-La Roche for the potential treatment of autism spec-trum disorder (ASD). It is an orally active non-peptide vasopressin receptor antagonist (vaptan) with reported selectivity for the vasopressin V1a receptor. Balovaptan is the first

(vaptan) with reported selectivity for the vasopressin V1a receptor. Balovaptan is the first vaptan drug to be tested in psychiatry, and its therapeutic potential is yet unknown. Based on the results of a recent phase II clinical trial in adults with ASD (Bolognani et al. 2017), balovaptan was granted “breakthrough therapy” designation by the United States Food and Drug Administration in January 2018. The drug is currently undergoing a phase II clinical trial in children and adolescents with ASD

The drug is currently undergoing a phase II clinical trial in children and adolescents with ASD for the alleviation of core ASD symptoms. To date, data on the safety or efficacy of balovaptan have not been published.

Vasopressin, also known as antidiuretic hor-mone, is a small peptide produced in the hypo-thalamus. It is a major physiological regulator of water homeostasis, affecting urine concentration and blood volume. Vasopressin binds to three different receptors, V1a, V1b (also called V3), and V2. Activation of V1a receptors on vascular smooth muscle causes vasoconstriction, and acti-vation of V2 receptors promotes water reabsorption in the kidneys. V1a receptors are also expressed on neurons

receptors promotes water reabsorption in the kidneys. V1a receptors are also expressed on neurons throughout the central nervous system, and vasopressin is known to act as a neuromodulator. The physiological effects of the V1b receptor are less well characterized, though V1b activation is thought to promote the release of adrenocorticotropic hormone (see ▶“Hypothalamic-Pituitary-Adrenal Axis”). The study of vaptan drugs has primarily focused on agents that antagonize renal V2 receptors (e.g.,

The study of vaptan drugs has primarily focused on agents that antagonize renal V2 receptors (e.g., conivaptan, tolvaptan) and their ability to treat conditions characterized by hyponatremia and fluid overload (Ali et al. 2007). However, a single-dose proof-of-mechanism study testing a small-molecule V1a antagonist (RG7713) in adults with ASD has provided preliminary evi-dence that targeting this receptor improves social cognition (Umbricht et al. 2017). Thus, in addi-tion to promoting diuresis,

improves social cognition (Umbricht et al. 2017). Thus, in addi-tion to promoting diuresis, vaptan drugs are potentially useful as therapeutics for neuropsychi-atric disorders.

Though there is limited evidence supporting vasopressin system dysfunction in the pathogen-esis of ASD, both vasopressin and the related neuropeptide oxytocin (see ▶“Oxytocin”) have been implicated in the regulation of social cogni-tion and behavior (Meyer-Lindenberg et al. 2011). Oxytocin and vasopressin interact with a number of other neurotransmitter systems, and the mech-anisms by which they alter social functioning in humans have yet to be fully understood. Never-theless, the oxytocin and

alter social functioning in humans have yet to be fully understood. Never-theless, the oxytocin and vasopressin systems remain feasible targets for novel therapeutics that aim to address the social-communicative symptoms of ASD (Baribeau and Anagnostou 2015). A phase I clinical trial of balovaptan was completed in 2015, testing the drug in healthy adults between 18 and 45 years of age. The phase I trial attempted to replicate previously reported effects of vasopressin administration on brain

I trial attempted to replicate previously reported effects of vasopressin administration on brain activity and functional connectivity during functional MRI tasks. Notably, this trial only included males, as the effects of oxytocin and vasopressin are thought to differ by sex. To estab-lish proof of mechanism, the study assessed the ability of balovaptan to modulate vasopressin-induced changes in brain activity. The results of the trial were not published, though the drug has continued to the

brain activity. The results of the trial were not published, though the drug has continued to the next stage of testing. The most recent data on balovaptan’s effects come from the VANILLA (Vasopressin ANtago-nist to Improve sociaL communication in Autism) study, a phase II clinical trial in adult males with ASD and normal intellectual functioning, primarily investigating the compound’s safety and efficacy in this population. Results of this study were pre-sented at the 2017 International Meeting

efficacy in this population. Results of this study were pre-sented at the 2017 International Meeting for Autism Research (Bolognani et al. 2017). A total of 223 patients were randomized to either the pla-cebo condition or 1 of 3 dosages (1.5 mg, 4 mg, 10 mg) for 12 weeks, and of those individuals, 192 (86%) completed the trial. Although the drug appeared to be safe and well-tolerated over the treatment period, there was no change in the pri-mary endpoint (caregiver reported Social

over the treatment period, there was no change in the pri-mary endpoint (caregiver reported Social Respon-siveness Scale Scores) between drug and placebo groups. However, at the 4 and 10 mg doses, signif-icant differences emerged between drug and pla-cebo on the Vineland Adaptive Behavior Scales (VABS), one of the secondary endpoints. Between baseline and the 12-week endpoint, VABS com-posite scores improved over placebo with effect sizes of 0.59 in the 4 mg group and 0.49 in the 10 mg group.

improved over placebo with effect sizes of 0.59 in the 4 mg group and 0.49 in the 10 mg group. Further analyses of this effect found the improvement in composite scores to be driven by the social and communication domains of the VABS. No consistent treatment effects were noted in any of the other secondary endpoints, including the Aberrant Behavior Checklist (ABC); the Repet-itive Behavior Scale-Revised (RBS-R); the State-Trait Anxiety Inventory (STAI); the Anxiety, Depression, and Mood Scale

(RBS-R); the State-Trait Anxiety Inventory (STAI); the Anxiety, Depression, and Mood Scale (ADAMS); and the CGI-I score. While the primary endpoint was not significant in this trial, the compound’s effect on VABS scores has caused the drug maker to alter its methods for future investigations. Currently, a sec-ond phase II trial of balovaptan (aV1ation; NCT02901431) is under way in children and ado-lescents with ASD, this time utilizing the VABS as the primary endpoint.

Banophen™[OTC] ▶Diphenhydramine  Banophen™Anti-itch [OTC] ▶Diphenhydramine  Barbiturates ▶Sedative Hypnotic Drugs  Barnes Akathisia Scale Wouter Staal Neuroscience, Radboud University Nijmegen Medical Centre Karakter, Nijmegen, The Netherlands

Definition The Barnes Akathisia Scale is a scale designed to rate the severity of drug-induced or Parkinson disease-based akathisia. Akathisia – literally meaning not sitting – is characterized by an inner restlessness, causing constant motion of hands or feet. Symptoms of akathisia can persist for years, even after discontinuing the precipitat-ing drug. The assessment of akathisia with the Barnes Akathisia Scale includes objective and subjective questions.

Barriers and Facilitators that Prevent and Enable Physical Healthcare Services Access for Autistic Adults
David Mason1, Barry Ingham2 and Jeremy Parr1,3 1Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK 2Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle, UK 3Sir James Spence Institute, Institute of Health and Society, Newcastle University, Royal Victoria Infirmary, Newcastle Upon Tyne, UK

Definition A barrier to physical healthcare access is any component of healthcare provision that negatively impacts the healthcare service access of autistic people. Conversely, facilitators are components of healthcare provision that improve the healthcare service access of autistic people. Barriers that affect the physical healthcare access of autistic people include communication, health profes-sional’s knowledge about autism, sensory sensi-tivities, and cognitive factors (Mason et al.

profes-sional’s knowledge about autism, sensory sensi-tivities, and cognitive factors (Mason et al. 2019). Brief information is given below about these factors, with examples; more information is contained in the referenced papers.

Autistic people’s communication style (e.g., difficulty describing symptoms, particularly those that involve abstract concepts or hyper-specific language) can be a barrier to healthcare provision (Nicolaidis et al. 2015). Moreover, some autistic people may not provide key infor-mation unless questions directly ask for this information (Bradshaw et al. 2019). But it is important to be mindful that communication involves two parties, so a clinician’s responsive-ness (or lack thereof) to

that communication involves two parties, so a clinician’s responsive-ness (or lack thereof) to alternative communica-tion styles (e.g., written notes) can act as a facilitator (or barrier) to healthcare provision (Mason et al. 2019).

Autistic people report that some clinicians have limited knowledge about autism. This can lead to clinicians making assumptions about the capabilities of autistic people (e.g., that the autis-tic person is not fully competent if they attend an appointment with a friend/family member) or clinicians assuming that behavioral expressions of symptoms (e.g., pain) are a part of autism (Nicolaidis et al. 2015). This agrees with many studies which have also identified that clinicians report a lack of

al. 2015). This agrees with many studies which have also identified that clinicians report a lack of knowledge about, but desire to learn more about, autism (Morris et al. 2019). (Note, some data indicate that many clinicians do know the key features of autism; Unigwe et al. 2017.)

Sensory sensitivities can affect multiple aspects of a healthcare visit: travel to a visit, waiting rooms, and during the visit itself. Autistic people can experience sensory issues when using busy or noisy public transport (Bradshaw et al. 2019). Waiting rooms can be problematic for autistic people due to lighting (e.g., bright fluo-rescent light) or being crowded; this may mean autistic people avoid seeking appointments if this environment cannot be avoided. Likewise, lighting during a

avoid seeking appointments if this environment cannot be avoided. Likewise, lighting during a healthcare visit may be too bright, or the walk from the waiting room to the healthcare provider’s office may be disorientating.

The cognitive factors unique to each autistic person can also be a barrier to healthcare access. Due to the cognitive load of managing social presentation, or trying to process verbal informa-tion in “real time,” autistic people find it difficult to understand information from health profes-sionals (Mason et al. 2019; Raymaker et al. 2017). Moreover, prospective memory difficulties (e.g., accurately recording future appointments or remembering to take medication) can be a barrier. Therefore,

recording future appointments or remembering to take medication) can be a barrier. Therefore, autistic people may need more support in how healthcare information is disseminated (e.g., audio recordings of appointments or a clearly phrased written summary of the appoint-ment) (Mason et al. 2019).

These barriers can interact. For instance, the anxiety brought about by being in a waiting room has a consequence for the subsequent healthcare appointment. An autistic person who is anxious (or exhausted from attempting to manage typical healthcare settings) may then find interacting with the healthcare provider more difficult or may find processing healthcare information, or providing information about their needs, more challenging. This means more time in the appointment will be spent on

about their needs, more challenging. This means more time in the appointment will be spent on maintaining the conversation and coping with anxiety, with less time spent pro-cessing the content of the healthcare discussion. Thus, the autistic person may leave without suffi-cient knowledge about the discussion or with multiple questions that were not addressed in the appointment.

Barriers to and Facilitators of Successful Early School Transitions for Children with Autism Spectrum Disorders
Laura Fontil1, Emily Beaudoin2, Jalisa Gittens2 and Ingrid E. Sladeczek2 1Department of Educational and Counselling Psychology, School/Applied Child Psychology, McGill University, Montreal, QC, Canada
2McGill University, Montreal, QC, Canada  Synonyms Early school beginnings; Successful school transition; Transition support practices

Definition The shift from an early childhood setting (e.g., home, preschool) to elementary school can be challenging for children, their families, and their teachers. Families must adapt to important changes once children transition to school (TTS), such as increased academic and social demands, decreased family support, and more transitions throughout the school day (Rimm-Kaufman et al. 2000). This shift tends to be par-ticularly challenging for children with neurodeve-lopmental disorders,

This shift tends to be par-ticularly challenging for children with neurodeve-lopmental disorders, such as autism spectrum disorder (ASD). In addition to the challenges experienced by neurotypical children, the social/communication deficits and challenges adapting to change experienced by children with ASDS make the transition to a novel, social environment like school particularly problematic for children with ASDs and their families (Forest et al. 2004). Research suggests that the

for children with ASDs and their families (Forest et al. 2004). Research suggests that the implementation of collaborative transition practices can facilitate the TTS for children with ASDs and their families (Fontil et al. 2019a, b). Transition support prac-tices can be defined as a series of activities that are implemented before, during, and/or after the TTS to support the child and family as they move from one educational environment to the next. Exam-ples of transition support practices

they move from one educational environment to the next. Exam-ples of transition support practices include transi-tion planning meetings, school visits, and school orientations. The implementation of high-quality TTS supports (i.e., supports that are individual-ized to the child and their family’s needs and involves direct contact with families) has been correlated with positive social and academic out-comes for children.

Collaboration between key stakeholders in a child’s life is essential to facilitating successful school beginnings. That is, home, the sending school (e.g., preschool, intervention center, day care), and the receiving school should be in com-munication (e.g., transition meetings, sharing infor-mation concerning the child between early childhood settings and schools) and aim to develop meaningful partnerships characterized by open communication, valuing insights provided by fam-ily members, and

partnerships characterized by open communication, valuing insights provided by fam-ily members, and considering the needs and values of families. Parents of children with ASDs have reported experiencing more stress than parents of children with other developmental disabilities (DDs; Griffith et al. 2010), which could be attrib-uted to distinct characteristics that are associated with ASDs (i.e., delayed diagnosis, more behav-ioral problems, lack of reciprocity; Griffith et al. 2010). Furthermore,

diagnosis, more behav-ioral problems, lack of reciprocity; Griffith et al. 2010). Furthermore, a common theme in the liter-ature among parents of children with ASDs is a lack of collaboration between home and school during the transition planning (Fontil et al. 2019b). Given that the TTS is often especially stressful for families with children with ASDs, mutual respect and meaningful partnerships need to be underscored and made a priority.

Although collaboration is integral in facilitat-ing successful school beginnings, several other important transition support practices have been highlighted in the literature for children with and without DDs. Child classroom visits, teacher home visits, and caregiver orientation services are significant predictors of academic achieve-ment (Schulting et al. 2005). Furthermore, increasing the number of school visits (i.e., 5–7 visits), prior to the TTS, is more valuable than having the child

of school visits (i.e., 5–7 visits), prior to the TTS, is more valuable than having the child visit the receiving school a few times (Schischka et al. 2012), and implementing a greater variety of transition practices is correlated with improved academic outcomes (Ahtola et al. 2011). Early intervention program staff, servicing children with ASDs, report using a diverse set of transition supports to facilitate elementary school entry. For example, program staff provide receiv-ing schools with

to facilitate elementary school entry. For example, program staff provide receiv-ing schools with information concerning a child, discuss the TTS with families, meet staff at the receiving school, encourage families to visit and meet staff at the receiving school, and hold tran-sition planning meetings (Fontil et al. 2019a).

Despite the social and academic implications of implementing high-quality transition supports, several barriers impede the implementation of collaborative transition practices. Commonly cited barriers to collaborative transition support practices for families with children with ASDs include lack of time, lack of resources, insufficient school staff training, and divergent beliefs concerning the transition planning process (Fontil et al. 2019b). Furthermore, families of children with ASDs report

planning process (Fontil et al. 2019b). Furthermore, families of children with ASDs report being unsatisfied with receiving school support, lack of continuity of care between sending and receiving programs, and a lack of collaboration between home and the receiving school (Fontil et al. 2019b).

The extant literature on TTS has highlighted that there are more commonalities than differ-ences when we compare transition experiences of children with ASDs to those of children with other DDs, with the exception that children with ASD have more difficulty with horizontal transi-tions (i.e., smaller transitions throughout the day; e.g., moving from classroom to playground). These smaller, daily transitions are more common in elementary schools in comparison to the pre-school environment

daily transitions are more common in elementary schools in comparison to the pre-school environment (Fontil et al. 2019b). Addi-tionally, elementary school staff report exhibiting an insufficient amount of ASD-specific knowl-edge, which may have an impact on their capacity to successfully integrate students (Fontil et al. 2019b). Similarly, global comparisons, between countries, reveal an international shift in attention toward TTS policy and practices which are supported by the growing number of

shift in attention toward TTS policy and practices which are supported by the growing number of TTS studies over time (Fontil et al. 2019b). Based on the literature, systemic changes are needed to promote better TTS for children with ASD. Provided with sufficient financial support, school teachers could be provided with resources to develop their knowledge to facilitate transition practices (i.e., workshops and training on individ-uals with diverse needs, release time to visit chil-dren’s sending

and training on individ-uals with diverse needs, release time to visit chil-dren’s sending programs). Additionally, families and caregivers need to be supported throughout the transition process (i.e., providing information about school supports). Finally, transition support practices require involvement of all key stake-holders to facilitate collaborative transition prac-tices; this includes active engagement between families, teachers, and other professionals (i.e., occupational therapists or

engagement between families, teachers, and other professionals (i.e., occupational therapists or resource teachers). Future research should focus on evaluating the effectiveness of specific TTS supports for students with ASD. Current research investigating transi-tion supports tend to be descriptive in nature. Future research should investigate efficacy through randomized control trials. Furthermore, it is important to more clearly differentiate the needs of children with ASDs from those with

it is important to more clearly differentiate the needs of children with ASDs from those with other DDs at the point of school entry to facilitate a clearer understanding of the specific supports that facilitate TTS for children with ASD.

Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults Laura Foran Lewis College of Nursing and Health Sciences, University of Vermont, Burlington, VT, USA
 Definition Factors that complicate the process of receiving a medical diagnosis of “autism spectrum disorder” by a qualified professional for autistic adults who were not diagnosed in childhood.

Historical Background Known prevalence of autism in adults is approx-imately 1.1%, but this is likely underestimated (Brugha et al. 2016). Experts estimate that as many as 40% of autistics are not diagnosed in childhood (Baron-Cohen et al. 2009). Those at highest risk of being misdiagnosed or not recog-nized during childhood include females, middle-aged and older adults, and individuals with more subtle traits and without cognitive or language delays. In general, females are at a

with more subtle traits and without cognitive or language delays. In general, females are at a disproportionate risk of misdiagnosis, delayed diagnosis, and not receiving a diagnosis compared to males across age groups (Loomes et al. 2017). There are many theories on the causes of missed diagnosis of autism among females. Emerging evidence shows a slightly different clinical presentation of autism among females, often referred to as the female autism phenotype, which might be missed by

of autism among females, often referred to as the female autism phenotype, which might be missed by clinicians, parents, teachers, and others looking for “classic” traits more common in males. Females may be more likely to exhibit subtle and internalized symptoms and less likely to show overt restricted interests than males (Bargiela et al. 2016; Loomes et al. 2017). “Camouflaging” is also common among females, in which individuals learn strategies to mask autistic traits and model typical

among females, in which individuals learn strategies to mask autistic traits and model typical social behaviors, making it more difficult to detect a diagnosis. Little is known about the impact of gender bias on diagnosing individuals who identify with a gender other than sex assigned at birth (e.g., agender, non-binary, genderqueer, transgender), but it is likely that these individuals are also at increased risk of missed diagnosis due to a reliance on male norms for the development of current

increased risk of missed diagnosis due to a reliance on male norms for the development of current diagnostic tools. Middle-aged and older adults are also at risk of missed diagnosis due to lack of awareness and understanding of autism during their childhood, particularly since the categorization of autism in the Diagnostic and Statistical Manual of Mental Disorders (DSM) has changed significantly over time. Autism did not appear in the DSM until 1980, and prior to the release of the DSM-III-R in

time. Autism did not appear in the DSM until 1980, and prior to the release of the DSM-III-R in 1987, diagnostic criteria for autism limited this label to individuals with severe symptoms and onset by age 30 months. The DSM-IV, released in 1994, was the first edition to identify autism as a “spectrum” and included the category of Asperger’s disorder for the first time, which could include individuals with more subtle traits. Many adults who grew up prior to these changes in the DSM were not

with more subtle traits. Many adults who grew up prior to these changes in the DSM were not diagnosed with autism because the criteria had not yet been established. In the most recent edition, the DSM-5 elimi-nated the term “Asperger’s” and categorized autism as a continuous spectrum called “autism spectrum disorders.” The latest categorization identifies traits that may appear across the lifespan and does not identify a specific window of onset, which may increase clinician’s ability to apply

and does not identify a specific window of onset, which may increase clinician’s ability to apply this diagnosis to adults meeting the criteria. However, there is growing evidence that the latest criteria are more likely than the previous categorization to exclude females, older individuals, individuals with above average intelligence, and individuals with subtle traits (Mazurek et al. 2017). Adults are increasingly becoming aware of their own autistic identity with a rise in media

2017). Adults are increasingly becoming aware of their own autistic identity with a rise in media representation of autism, biographical accounts of diagnosis during adulthood, and online pres-ence of support groups and forums related to autism. In addition, many adults recognize their own autistic traits when their children are diag-nosed with autism. Self-diagnosis of autism is a growing phenomenon, and many individuals report they are satisfied with a self-diagnosis and confident in their

and many individuals report they are satisfied with a self-diagnosis and confident in their autistic identity without seeking a formal diagnosis (Lewis 2016a). However, others who are self-diagnosed report recurring self-doubt about their autism status and experi-ence unresolved cyclical grief. Without a formal diagnosis, individuals are also ineligible for pro-fessional support of any kind and typically lack access to community resources. There are known benefits to obtaining a diagnosis beyond

lack access to community resources. There are known benefits to obtaining a diagnosis beyond increased access to services. Individuals who are formally diagnosed report that awareness of their autistic identity was often a relief and led to a new sense of belonging, empowerment, understanding of strategies to improve quality of life, and increased self-acceptance (Crane et al. 2018; Lewis 2016b). Many autistics are unaware of their diagnosis until adulthood, and awareness of autism can

2016b). Many autistics are unaware of their diagnosis until adulthood, and awareness of autism can significantly benefit their mental health.

Current Knowledge Autistic adults seeking diagnosis face significant barriers, and 80% report that obtaining a formal diagnosis was difficult or not possible (Taylor and Marrable 2011). The process of obtaining a formal diagnosis typically takes years, and on average adults see five professionals before receiving a diagnosis (Jones et al. 2014; McKenzie et al. 2015). Barriers identified by adults seeking formal diagnosis include anxiety; cost; lack of access to adult specialists and limited

seeking formal diagnosis include anxiety; cost; lack of access to adult specialists and limited awareness of autism by most professionals; inability to describe their symptoms; fear of not being believed or under-stood; fear of not being believed or under-stood; lack of rapport or mistrust of healthcare pro-fessionals; stigma; and complexity of the healthcare system (Crane et al. 2018; Lewis 2017; Taylor and Marrable 2011; Vogan et al. 2017). Characteristics of autism can exacerbate these

2017; Taylor and Marrable 2011; Vogan et al. 2017). Characteristics of autism can exacerbate these barriers, creating a gap that precludes diagnosis for those with challenges not severe enough to be detected in childhood but too severe to pursue a diagnosis in adulthood. For example, deficits in social functioning often lead to social anxiety, which may prevent individuals from making an appointment with a healthcare professional due to worries about social interactions with reception-ists,

with a healthcare professional due to worries about social interactions with reception-ists, clinicians, etc. Individuals may also feel anx-iety about the sensory experience of the waiting room or office that prevents them from making an appointment or following up. In addition, approximately half of autistics experience alexithymia, or difficulty identifying and verbalizing their own feelings and emotions, which may make it difficult for them to commu-nicate their symptoms adequately to a

and emotions, which may make it difficult for them to commu-nicate their symptoms adequately to a profes-sional who does not specialize in autism (Trammell et al. 2013). They may also struggle with introspection or be unable to recognize their own autistic traits. Individuals who have challenges with executive functioning, which includes tasks such as organizing, focusing, and multitasking, may have difficulty navigating the healthcare system, planning for transportation, keeping appoint-ments,

difficulty navigating the healthcare system, planning for transportation, keeping appoint-ments, or coordinating other tasks needed to pursue a diagnosis. Many individuals seeking a diagnosis of autism are also unemployed or employed part time (Happé et al. 2016), which may prohibit them from being able to maintain insurance or to afford the costs associated with evaluation and diagnosis.

Fear of not being believed, being dismissed by clinicians, or being blamed for symptoms is very common among adults seeking diagnosis, partic-ularly among females (Crane et al. 2018; Lewis 2017). Adults report that they feel they are at the mercy of their clinicians for referrals as gate-keepers of diagnosis and fear that lack of clinician awareness of autism presentation in adults or in females may prevent them from receiving a diag-nosis. Many fear detrimental effects on their iden-tity

may prevent them from receiving a diag-nosis. Many fear detrimental effects on their iden-tity formation if they are evaluated and told they do not meet criteria for a diagnosis of autism.

Beyond those barriers identified by autistics, clinicians also cite significant barriers to making a diagnosis of autism in adults. Since autism is a neurodevelopmental condition, it is characterized by the presence of autistic traits in the develop-mental period. One significant barrier to clinicians making a diagnosis is the practicality of inter-viewing a parent or other reliable individual who can speak to the presence of these traits during childhood (Lai and Baron-Cohen 2015; Trammell et

can speak to the presence of these traits during childhood (Lai and Baron-Cohen 2015; Trammell et al. 2013). There may be limitations such as the willingness or availability of informants to meet, their ability to recall details from the individual’s early childhood, or their perception of key events compared to the individual seeking a diagnosis (e.g., what they view as culturally “typical” vs. “atypical” behavior). If a parent or childhood caregiver cannot provide this information, clinicians

behavior). If a parent or childhood caregiver cannot provide this information, clinicians may opt to meet with other informants who can speak to the individual’s childhood such as an older sibling or other relatives. If no such informants are available, clinicians must rely on educational and medical records and the adult’s recollection of childhood for information on the developmental period, which may lack sufficient detail to make a diagnosis. Clinician knowledge of autism is another

which may lack sufficient detail to make a diagnosis. Clinician knowledge of autism is another significant barrier to adult diagnosis. Few instru-ments exist to assist in the assessment of adults, and even fewer have validated norms for adults. While the Autism Diagnostic Observation Schedule (ADOS) module 4 is the only validated tool for adult diagnosis, this must be used with caution due to its limited sensitivity to detect symptoms in females and individuals who have learned strategies that

limited sensitivity to detect symptoms in females and individuals who have learned strategies that may camouflage symptoms (Lai and Baron-Cohen 2015; Trammell et al. 2013).

Adult diagnosis of autism relies heavily on clinician expertise, and few clinicians special-ize in evaluating adults for autism. Primary care providers report limited understanding and lack of training about autism in general, with three out of four clinicians rating their knowledge and skills in providing care to autistic patients as poor or fair (Zerbo et al. 2015). Diagnosis is further complicated because more than 70% of autistics have at least one co-occurring medical, psychiatric, or

because more than 70% of autistics have at least one co-occurring medical, psychiatric, or develop-mental condition, most often including anxiety and mood disorders (Happé et al. 2016; Lai and Baron-Cohen 2015; Trammell et al. 2013). Since many differential diagnoses have overlapping symptoms or traits, clinicians may struggle to determine whether characteristics are related to autism, a co-occurring condition, or a differential diagnosis. Making a differential diagnosis is espe-cially

co-occurring condition, or a differential diagnosis. Making a differential diagnosis is espe-cially challenging when clinicians are missing key information about onset of traits and the developmental period. Person-environment fit and cultural norms can also significantly impact interpretation of behav-iors and traits and prevent diagnosis (Lai and Baron-Cohen 2015). That is, what is considered typical social behavior in one environment may be considered atypical in another environment.

typical social behavior in one environment may be considered atypical in another environment. Therefore, an individual with many autistic traits but whose traits do not interfere with functioning might not meet criteria for diagnosis, while an individual with fewer autistic traits that do inter-fere with functioning might meet criteria for diagnosis. These nuances may complicate the process of determining a diagnosis in adulthood where developmental milestones are more ambiguous. Given these

determining a diagnosis in adulthood where developmental milestones are more ambiguous. Given these factors, even if the autistic indi-vidual is able to overcome the significant barriers that may prevent them from meeting with a clini-cian and accurately communicating information about their autistic traits, clinicians still might not be able to make an accurate diagnosis. For those who actually receive a diagnosis, experiences are often negative, with 40% of autistics reporting they were

receive a diagnosis, experiences are often negative, with 40% of autistics reporting they were “very/quite dissatisfied” with the diag-nostic process (Jones et al. 2014).

Future Directions Given the potential benefits of recognizing autism for identity building and self-acceptance, it is critical to increase access to diagnosis for those on the spectrum. The World Health Organization recommends screening all children for autism as part of routine care (World Health Organization 2018), and over time, this practice should help reduce the number of adults who were not diag-nosed in childhood. There continues to be a paucity of validated tools for screening and

not diag-nosed in childhood. There continues to be a paucity of validated tools for screening and diagnosis of autism in adults, which is a research priority (Wigham et al. 2018). Increased attention must be paid to developing diagnostic tools for all ages that rec-ognize subtle and internalized traits that are more likely to be seen in females and individuals with-out cognitive impairment or language delays. Clinicians across practice settings also require increased training on autism. Primary

delays. Clinicians across practice settings also require increased training on autism. Primary care pro-viders may be the only healthcare professionals in position to detect autism in undiagnosed adults, so knowledge of common presentation is critical. There is a need for increased education in under-graduate and graduate settings for healthcare pro-fessionals to increase identification of autism and to minimize the negative experiences of those who feel that their autistic characteristics are

and to minimize the negative experiences of those who feel that their autistic characteristics are dismissed by clinicians who lack understanding of adult presentation (Zerbo et al. 2015). All professionals must also be mindful of the significance of self-diagnosis in adults who believe they are autistic. Since such significant barriers to diagnosis exist, many adults rely on a self-diagnosis for autistic identity formation (Lewis 2016a). Dismissal of a self-diagnosis by a professional may be

autistic identity formation (Lewis 2016a). Dismissal of a self-diagnosis by a professional may be detrimental to self-acceptance and understanding. Professionals must be mindful of their own preconceptions about self-diagnosis and remain open to exploring the potential of an autism diagnosis in those who perceive themselves as being on the autism spec-trum even if “classic” autistic traits are absent. For those who do receive an autism diagnosis in adulthood, little to no post-diagnostic

are absent. For those who do receive an autism diagnosis in adulthood, little to no post-diagnostic support is offered. Most individuals indicate that they would like counseling, social skills training, and access to support groups. However, as many as 77% receive no support whatsoever after diagnosis (Jones et al. 2014; Taylor and Marrable 2011), and qualitative studies indicate that individuals often feel lost and directionless and lack support after diagnosis (Crane et al. 2018; Lewis

often feel lost and directionless and lack support after diagnosis (Crane et al. 2018; Lewis 2016b). There is a need for an effec-tive and evidence-based approach to assist adults in managing mental health challenges as well as providing practical supports and resources after diagnosis. Though formal services are limited, there are several online communities that promote positive images of autism and neurodiversity. Many adults utilize these websites to seek information and connection while

and neurodiversity. Many adults utilize these websites to seek information and connection while working through the diagnostic process and beyond. Table 1 provides examples of some of these sites. There are many severe barriers to formal diag-nosis of autism in adulthood. Primary barriers include autistic traits themselves that prevent the individual from obtaining an assessment, lack of understanding of adult presentation of autism by clinicians, the impracticality of including infor-mants

of adult presentation of autism by clinicians, the impracticality of including infor-mants from the developmental period in assess-ment, and the lack of appropriate tools for adult diagnosis. Given the potential mental health ben-efits of being aware of autism identity, researchers and clinicians must prioritize interventions and tools that increase early screening and access to diagnosis for autistic adults.

Table 1 Examples of online communities for adults with ASC | Community Name | URL | |---|---| | Asperger/Autism Network | https://www.aane.org/ | | Autism Self Advocacy Network | https://autisticadvocacy.org/ | | Autism Empowerment | https://www.autismempowerment.org/ | | Autism Self Advocacy Network | https://autisticadvocacy.org/ | | Reddit [Autism Subreddit] | https://www.reddit.com/r/autism/ | | Twainbow | https://www.twainbow.org/ | | Wrongplanet | https://wrongplanet.net/ |  Basal

| | Twainbow | https://www.twainbow.org/ | | Wrongplanet | https://wrongplanet.net/ |  Basal Ganglia Youngsun T. Cho Yale Child Study Center, New Haven, CT, USA  Synonyms Striatum; Sub-cortical ganglia  Definition “Basal Ganglia” refers to a collection of sub-cortically (beneath the cortex) located nuclei in the brain. Originally, these nuclei were collec-tively identified as a conduit for information to pass from cortical association regions to motor cortex for the initiation and control of

to pass from cortical association regions to motor cortex for the initiation and control of movement. Today, the function of the basal ganglia is thought to include not only the shaping of motor responses, but also the integration of emotional, motivational, and cognitive information. The inte-gration of such a wealth of information has been shown to contribute to motivated behaviors, habit formation, and motor learning. As part of these functions, the basal ganglia provides a locus of control

and motor learning. As part of these functions, the basal ganglia provides a locus of control for movement – simultaneously suppressing unwanted movement and enhancing desired movement (Mink 1996). The subcortical structures typically included as part of the basal ganglia are: caudate nucleus and putamen (collectively called the striatum), nucleus accumbens (included in the ventral stria-tum), globus pallidus (both internal (GPi) and external (GPe) segments), substantia nigra (both pars

globus pallidus (both internal (GPi) and external (GPe) segments), substantia nigra (both pars compacta (SNpc) and pars reticulata (SNpc)), and the subthalamic nucleus (Groenewegen 2003). The interconnections between the nuclei of the basal ganglia allow for this collection of regions to act as a unit (Fig. 1). Together, they allow the impulses for movement and other behaviors that originate in the cortex to be refined towards a final output and expression. The main input region of the basal

in the cortex to be refined towards a final output and expression. The main input region of the basal ganglia is considered to be the striatum. The striatum receives cortical information that is topographically distrib-uted based on the type of information. Emotional, associative, cognitive, and motor information from the cortex uniquely arrive in specific regions of the striatum, distributed in a ventral (bottom) to dorsal (top) manner, respectively. Information from the striatum then splits into

(bottom) to dorsal (top) manner, respectively. Information from the striatum then splits into two main pathways. The “direct” pathway channels information from the striatum to either the substantia nigra or the globus pallidus interna, the two major output regions of the basal ganglia. From these regions, information is then sent to the thalamus; the thalamus sends this, now processed, information back to the cor-tex. By contrast, the “indirect” pathway passes information first from the striatum

back to the cor-tex. By contrast, the “indirect” pathway passes information first from the striatum to the globus pallidus externa and subthalamic nucleus, and then to the globus pallidus interna and substantia nigra for output to the thalamus. As with the direct path-way, the information sent to the thalamus is directed back to the cortex. The indirect and direct paths have distinct neurotransmitters and receptor profiles, and together form the “cortico-basal-ganglia-thalamo-cortical loops” that

and receptor profiles, and together form the “cortico-basal-ganglia-thalamo-cortical loops” that contain dis-tributed emotional, motivational, associative, cog-nitive, and motor information (Alexander et al. 1986). These loops allow the impulses that origi-nate in the cortex to be refined through the basal ganglia, and then sent back to cortex for a motor response output. Abnormalities in the basal ganglia have been proposed to account for some of the symptoms of autism, including repetitive

ganglia have been proposed to account for some of the symptoms of autism, including repetitive motor behaviors, decreased social interest/ability, and general motor dysfunction. The caudate nucleus, in particular, has been shown to have accelerated growth in children with autism, compared to typically developing chil-dren (Langen et al. 2014). This fits with other stud-ies demonstrating an enlarged striatum in patients with autism. In animal models of autism, abnormal-ities in striatal

enlarged striatum in patients with autism. In animal models of autism, abnormal-ities in striatal interneurons, the small, local neurons that are key for regulating the neurons in the striatum that project to other regions, are thought to underlie striatal pathology. Decreased anticipation and processing of social rewards, and rewards in general, along with decreased recruitment of the ventral striatum have been noted, identifying a potential mechanism for decreased sociability in autism. Given

have been noted, identifying a potential mechanism for decreased sociability in autism. Given these striatal abnormalities, the ques-tion of whether motor abnormalities are primary, and the resulting symptoms of autism are merely secondary to those motor abnormalities, has been raised (Subramanian et al. 2017). Further research is needed to test this and to better understand the specific basal ganglia abnormalities in autism.

BASC-2 ▶Behavior Assessment System for Children, 2nd Edition  BASC-3 ▶BASC-III  BASC-III Kimberly Ho Misiaszek Yale Child Study Center, New Haven, CT, USA  Synonyms ▶BASC-3  Description The Behavior Assessment System for Children, Third Edition (BASC-3) is a multimethod, multi-dimensional system that provides a comprehen-sive assessment of behavioral and emotional functioning in children, adolescents, and young adults from ages 2 to 25 (Reynolds and Kamphaus 2015). Its multiple components

and young adults from ages 2 to 25 (Reynolds and Kamphaus 2015). Its multiple components (hence multimethod) can be used individually or in combination and include: The Behavioral and Emotional Screening System (BESS), Teacher Rating Scales (TRS), Parent Rating Scales (PRS), Self-Report of Personality (SRP), Structured Developmental History (SDH), Stu-dent Observation System (SOS), Behavior Inter-vention Guide, Behavioral and Emotional Skill Building Guide, Flex Monitor, and Parenting

Inter-vention Guide, Behavioral and Emotional Skill Building Guide, Flex Monitor, and Parenting Relationship Questionnaire (PRQTM). Used together, the information yielded from the com-ponents aid in clinical diagnosis and identifying educational supports and services (Reynolds and Kamphaus 2015). Emotional and behavioral functioning specific to a certain setting or context is provided when used individually. Additionally, the BASC-3 assesses positive and negative aspects of personality and

individually. Additionally, the BASC-3 assesses positive and negative aspects of personality and behavior, making it multidimensional in nature (Altmann et al. 2018). A detailed review of each component is pro-vided in the manual (Reynolds and Kamphaus 2015) thus only a brief description of each follows:

*   The TRS and PRS each have three age level forms (preschool, child, and adolescent) and measure adaptive and problem behavior in the school and home setting using a four-point Likert scale ranging from Never to Almost Always.
*   The SRP captures respondents’ feelings, behaviors, and self-perceptions and has forms for children, adolescents, and young adults (Reynolds and Kamphaus 2015).

*   The SDH captures developmental information across a variety of domains that can aid in diagnosis and treatment.
*   The SOS allows for a 15-min period of a stu-dent’s behavior in a classroom to be recorded and evaluated.
The following descriptions are on the BASC-3 components that identify, monitor, and promote optimal behavioral and emotional functioning:

*   The BESS is a quick screener that identifies behavioral and emotional problems in children and adolescents and can be filled out by teachers, parents, and students ages 8–18.
*   The Behavior Intervention Guide is a compila-tion of evidence-based strategies for common emotional and behavioral problems that can be applied by a variety of behavioral professionals (Altmann et al. 2018).

*   The Behavioral and Emotional Skill Building Guide provides small-group activities that pro-mote and enhance positive behavioral and emotional skills (Reynolds and Kamphaus 2015).
*   The Flex Monitor is an Internet-based tool that allows professionals to monitor and track a customizable set of emotions or behaviors which can be compared to a nationally repre-sentative population sample, in order to mea-sure behavioral change over a period of time (Reynolds and Kamphaus 2015).

*   The PRQ captures the parent’s perceived rela-tionship between themselves and the child, and assesses dimensions such as attachment, involvement, parenting style, stress, and school satisfaction (Reynolds and Kamphaus 2015).

Historical Background In 1992, after seven years of development, stan-dardization, and validation, the Behavior Assess-ment System for Children (BASC) was published due to the need for a psychometrically sound and integrated assessment of child and adolescent emotions and behaviors, appropriate for multiple settings (Reynolds and Kamphaus 2015). In 2004, the BASC-2 was released and quickly became the most commonly used set of behavior rating scales in public schools in the USA and

became the most commonly used set of behavior rating scales in public schools in the USA and internationally (Reynolds and Kamphaus 2015). In 2015, the third edition was published, with the addition of electronic administration and scoring, improved interpretive reporting, and Flex Monitor (see above in “Description” section) (Reynolds and Kamphaus 2015).

Psychometric Data The TRS, PRS, and SRP were designed based on a combination of theory and empirical data. Over 120 teachers, 100 parents, and 400 students were surveyed about negative and positive behaviors observed in home and classroom settings (Reynolds and Kamphaus 2015). Approximately 90 negative and 50 positive behaviors were iden-tified and compared to the BASC-2 item pool, and around 10–15 new items were written for the BASC-3 TRS, PSR, and SRP standardization forms (Reynolds and

10–15 new items were written for the BASC-3 TRS, PSR, and SRP standardization forms (Reynolds and Kamphaus 2015). To ensure each domain had content that was adequate and relevant, a review of the BASC-2 forms, the newly written items, and items on the original BASC served as the basis of the standardized form items (Reynolds and Kamphaus 2015). Gen-eral norms were derived from data collected from a large and representative sample of children across the United States, while children with a

from a large and representative sample of children across the United States, while children with a diagnosis of one or more emotional or behavioral problems ages 4 through 18 comprised the clinical norms sample (Reynolds and Kamphaus 2015). The BASC-3 Manual provides evidence of reliability by reporting internal consistency, test-retest reliability, and interrater reliability for the TRS, PRS, and SRP (Reynolds and Kamphaus 2015). Overall, the scales and com-posites were found to have

PRS, and SRP (Reynolds and Kamphaus 2015). Overall, the scales and com-posites were found to have reliability coefficients of 0.80 and above, thus demonstrating the ability to reliably estimate behavior for diagnostic and treatment planning. Extensive validity evidence is also provided in the BASC-3 Manual for each scale including scale intercorrelations and factor analyses, correlations with other rating scales, and score profiles of groups of children with particular clinical diagnoses or

other rating scales, and score profiles of groups of children with particular clinical diagnoses or educational clas-sifications (Reynolds and Kamphaus 2015). Additionally, the BASC-3 contains validity indices that allow for the detection of untruthful responding, carelessness, extreme responding, or other validity threats (Reynolds and Kamphaus 2015).

Clinical Uses The BASC-3 and its components (TRS, PRS, SRP, SDH, and SOS) can be used in a variety of settings and thus has wide applications including aiding in clinical diagnosis, educational classifi-cation, manifestation determination, assessment of individuals with limitations of vision and hear-ing, program evaluation, forensic evaluation, and research (Reynolds and Kamphaus 2015). In regards to clinical diagnosis, the BASC-3 assesses symptoms found in the DSM-5 for dis-orders in

In regards to clinical diagnosis, the BASC-3 assesses symptoms found in the DSM-5 for dis-orders in childhood or adolescence. The rating scales are also sensitive to a variety of classroom problems, which help differentiate academic dif-ficulties from behavioral problems. They also help assess severe emotional disturbance as called for by IDEA (2004) (Reynolds and Kamphaus 2015). The BASC-3 is effective in determining the origins of behavior and can be used by experienced individuals to evaluate

in determining the origins of behavior and can be used by experienced individuals to evaluate chil-dren with sensory impairments (Reynolds and Kamphaus 2015). Lastly, the BASC-3 has been found to be helpful in the evaluation of children’s progress in programs and/or their response to interventions when administered over multiple time points, as well as in legal or forensic settings given its psychometric properties and ability to detect dissimulation (Reynolds and Kamphaus 2015).

Baseline Cate Kraper Clinical Psychology, University of Massachusetts Boston, Boston, MA, USA  Definition An assessment of abilities that serves as an anchor for monitoring subsequent change over time when combined with follow-up assessments. A baseline assessment may occur prior to a child entering school, or, if a child is enrolled in an intervention study, prior to administering the treatment. A baseline assessment may involve more than one assessment point, to determine the stability of a

A baseline assessment may involve more than one assessment point, to determine the stability of a behavior prior to introducing an experimental manipulation (e.g., an intervention designed to change the behavior assessed during the baseline period). Later assessments can be compared to the baseline assessment, so that symptoms or abilities may be tracked over time, and improvements or deterioration in abilities may be noted. This may be especially helpful for developmental disorders such as

in abilities may be noted. This may be especially helpful for developmental disorders such as autism, in which the symptoms and their severity can change dramatically over time. In cases in which deterioration of skills occurs, the combination of a thorough baseline assessment and appropriate follow-up assessments can help identify specific skills that can be targeted in treat-ment. Baseline assessments might include mea-sures of language and communication, social skills, self-help skills, play,

might include mea-sures of language and communication, social skills, self-help skills, play, and IQ.

Bayley Scales of Infants Development-II Amanda Steiner Yale Child Study Center, New Haven, CT, USA  Synonyms Bayley-III  Description The Bayley-III is a standardized developmental assessment that evaluates the functioning of infants and young children from 1 month to 42 months of age. It is designed to identify chil-dren with developmental delays and aid in inter-vention planning. The test assesses multiple developmental domains, including cognitive, lan-guage (both receptive and expressive),

multiple developmental domains, including cognitive, lan-guage (both receptive and expressive), motor (both fine and gross), as well as social emotional and adaptive behavior. The cognitive, language, and motor scales are based primarily on direct assessment, whereas the social-emotional and adaptive behavior scales are caregiver question-naires. Scaled scores are provided for each sub-test, with composite scores and percentile ranks for each overall scale. Developmental age equiv-alents are

composite scores and percentile ranks for each overall scale. Developmental age equiv-alents are also provided for cognitive, language, and motor subtests. Growth scores can also be calculated to evaluate a child’s growth over time for cognitive, language, and motor subtests.

Historical Background The Bayley Scales of Infant Development (BSID) were first published in 1969, with revisions in 1993 (BSID-II) and 2006 (Bayley-III). In its most recent edition, the test was updated to reflect updates in the field of child development research, including information processing and preverbal intelligence. However, the Bayley-III still retains its focus on more classic themes in child develop-ment (e.g., Piaget, Vygotsky). Additionally, many items from the BSID-II were removed

child develop-ment (e.g., Piaget, Vygotsky). Additionally, many items from the BSID-II were removed or changed and new items were developed.

Psychometric Data Normative data for the cognitive, language, and motor scales was collected from 1700 children aged 1 month to 42 months (with 100 individuals in 17 separate age groups) and closely reflected the 2000 US Census in terms of parental educa-tion level, race/ethnicity, and geographic region. Only children born between 36 and 42 weeks were included. Children with mental, physical, or behavioral difficulties constituted about 10% of the total sample. The social-emotional scale was

or behavioral difficulties constituted about 10% of the total sample. The social-emotional scale was normed using 456 children, and the adaptive behavior scale included 1350 children.

Clinical Uses The Bayley-III is designed to be used to identify children with developmental delays. It is recommended that the Bayley-III be administered by an individual with formal graduate or profes-sional training in developmental assessment. While it is possible for a psychometrician to administer the Bayley-III, test interpretation should occur by an individual with appropriate training to interpret test data.

Bayley-III ▶Bayley Scales of Infants Development-II  BCaBA ▶Board Certified Associate Behavior Analyst  BCBA ▶Board Certified Associate Behavior Analyst  BCBA-D ▶Board Certified Associate Behavior Analyst  Behavior Analyst Certification Board Mary Jane Weiss and Samantha Russo Institute for Behavioral Studies, Endicott College, Beverly, MA, USA  The Behavior Analyst Certification Board®, Inc. (BACB®) is a nonprofit corporation established in 1998 to meet professional credentialing needs identified

is a nonprofit corporation established in 1998 to meet professional credentialing needs identified by behavior analysts, governments, and consumers of behavior analysis services. The BACB’s mission is to develop, promote, and implement an international certification pro-gram for behavior analyst practitioners. The BACB has established uniform content, stan-dards, and criteria for the credentialing process that are designed to meet:

1. The legal standards established through state, federal, and case law 2. The accepted standards for national certifica-tion programs 3. The “best practice” and ethical standards of the behavior analysis profession

Prior to the creation of the BACB, no uniform standards existed for evaluating the education, training, and experience of a behavior-analytic service provider. Since its inception, the BACB has set the standards for education and training in the field of applied behavior analysis and has certified more than 25,000 individuals (as of 2017). The BACB adheres to the national standards for organizations that grant professional creden-tials. The BACB certification procedures and examination content

that grant professional creden-tials. The BACB certification procedures and examination content undergo regular psychomet-ric review and validation, pursuant to a job anal-ysis survey of the profession and standards established by content experts in the field. In 2015, in order to better control experience hours, all BCBAs were required to complete and pass a supervision training curriculum. This change was also supplemented by the change in degree requirements of 2016. In order to be qual-ified

change was also supplemented by the change in degree requirements of 2016. In order to be qual-ified to be a BCBA, the individual must hold a master’s degree in behavior analysis, psychology, or education. Other related fields, which were previously accepted by the BACB, are no longer accepted. The BACB offers four different credentials, BCBA-D, BCBA, BCaBA, and RBT. The RBT credential went into effect in 2016. With the addi-tion of the RBT credential, the BACB became the only organization in the

in 2016. With the addi-tion of the RBT credential, the BACB became the only organization in the field of behavior analysis to offer credentials at every educational level (graduate, undergraduate, and high school). The Behavior Analyst Certification Board’s BCBA, BCaBA, and RBTcredentialing programs are accredited by the National Commission for Certifying Agencies, the accreditation body of the Institute for Credentialing Excellence. The BACB is endorsed by the Association of Profes-sional

Institute for Credentialing Excellence. The BACB is endorsed by the Association of Profes-sional Behavior Analysts, the Association for Behavior Analysis International, Division 25 (Behavior Analysis) of the American Psycholog-ical Association, and the European Association for Behaviour Analysis. The most up-to-date information on the BACB can be found at www.bacb.com.

Behavior Assessment System for Children, 2nd Edition Felice Orlich Autism Psychology Services, Seattle Children’s Hospital CAC – Autism Center, Seattle, WA, USA
 Synonyms BASC-2  Definition Acronym: BASC-2 Author: Kamphaus, Randy W.; Reynolds, Cecil R. Purpose: Designed to determine behavioral and emotional functioning in children and adoles-cents in preschool through high school
Administration time: 10–20 min (teacher: TRS and parent: PRS), 30 min (self: SRP)

Administration time: 10–20 min (teacher: TRS and parent: PRS), 30 min (self: SRP)
Scores: Scores/Interpretation: Tscores and per-centiles for general population and clinical populations
Ages/grades: Ages: 2:0 through 21:11 (TRS and PRS); 6:0 through college age (SRP). English and Spanish forms are available.

Scoring/administration programs: BASC-2 ASSIST and ASSIST-plus provide scoring, reporting, and relationship to DSM-IV-TR diag-nostic criteria. Online administration, scoring, and reporting are available for the TRS and PRS scales.
Publisher: Pearson Publisher address: Pearson, 19500 Bulverde Road, San Antonio, TX 78259; Telephone: 800-627-7271; FAX: 800-632-9011; E-mail: pearsonassessments@pearson.com; Web: www.pearsonassessments.com.

The Behavior Assessment System for Chil-dren, 2nd Edition (BASC-2) is a commonly stan-dardized set of rating scales and forms used to assess behavior in children and adolescents. The BASC-2 is normed on current US census popula-tion characteristics. Specific norms are not avail-able for individuals with autism spectrum disorders (ASD) or neurodevelopmental disor-ders.

Available scales include the Teacher Rating Scales (TRS), Parent Rating Scales (PRS), Self-Report of Personality (SRP), Student Observation System (SOS), and a Structured Developmental History (SDH).

The Teacher Rating Scales (TRS) measure adaptive and problem behaviors in the pre-school or school setting. Teachers or other qual-ified observers can rate specific behaviors on a four-point scale of frequency, ranging from “Never” to “Almost Always.” The TRS con-tains 100–139 items. The Parent Rating Scales (PRS) measure both adaptive and problem behaviors in the community and home setting. The form requires a fourth grade reading level and is available in Spanish. Similar to the TRS, parents

form requires a fourth grade reading level and is available in Spanish. Similar to the TRS, parents or caregivers can complete forms at three age levels – preschool (ages 2–5), child (ages 6–11), and adolescent (ages 12–21). The PRS contains 134–160 items and uses a four-choice response format. Both scales capture internalizing and externalizing behavioral adjustment reflected in an overall Behavioral Symptoms Index (BSI). Scales uniquely appli-cable to children and adolescents with ASD include

Symptoms Index (BSI). Scales uniquely appli-cable to children and adolescents with ASD include assessment of functional communica-tion and social skills.

The Self-Report of Personality (SRP) provides self-assessment of a child or adult’s thoughts and feelings. Each form – child (ages 8–11), adolescent (ages 12–21), and college (ages 18–25) – takes about 30 min to complete. The SRP-Interview (SRP-I) form for children 6–7 provides simple yes-or-no responses to questions asked by an examiner. The SRP-I takes about 20 min to com-plete. Spanish versions are available for the child and adolescent forms. In addition to measuring, internalizing

versions are available for the child and adolescent forms. In addition to measuring, internalizing (depression/anxiety/self-esteem), and externalizing problems (impulsivity/attention), the SRP offers self-assessment of interpersonal rela-tionships and social stress.

Recent validity studies of the BASC-2 for use in individuals with ASD have found that the BASC-2 TRS and PRS forms can be effective in differentiating between children with high-functioning autism and typically developing peers. In a recent study (Ensign 2010), significant differences were found between individuals and typically developing groups on all PRS scales. DSM-IV-TR screening indices suggested that the Developmental Social Disorders Scale was highly effective in differentiating between

that the Developmental Social Disorders Scale was highly effective in differentiating between the two groups. Hass et al. (2010) found similar results on the TRS in children receiving an edu-cational classification of autism spectrum disorder.

Behavior Development Questionnaire Corey Ray-Subramanian Waisman Center, University of Wisconsin-Madison, Madison, WI, USA  Synonyms BDQ; Wing Subgroups Questionnaire (WSQ)  Description The Behavior Development Questionnaire (BDQ), formerly referred to as the Wing Sub-groups Questionnaire, is an assessment tool used to classify individuals with autism spectrum dis-orders into one of three categories based on Wing and Gould’s (1979) categorization scheme: aloof, passive, and active-but-odd

based on Wing and Gould’s (1979) categorization scheme: aloof, passive, and active-but-odd (Castelloe and Dawson 1993). These classifications are distin-guished based on the individual’s quality of social interaction. The aloof group is considered to rarely display spontaneous social approaches to others, other than for the purpose of making requests, and often rejects social contact from others. The passive group shares this lack of spon-taneous social approaches but does not reject social

The passive group shares this lack of spon-taneous social approaches but does not reject social approaches from others. The active-but-odd group is described as being willing to make social approaches to others, but the approaches are considered unusual in quality (Castelloe and Dawson 1993).

communication skills, imitation, play skills, unusual motor behavior, resistance to change, physical coordination, and challenging behaviors (Castelloe and Dawson 1993). Parents or teachers are asked to rate the frequency with which the target individual’s behavior fits the described behavior (0 ¼ never; 6 ¼ always). An example item is “When my child is with unfamiliar adults or children he readily approaches others to interact and responds easily to others. His manner of interacting is

readily approaches others to interact and responds easily to others. His manner of interacting is generally appropriate (not awkward or unusual)” (Castelloe and Dawson 1993; p. 240). Summary scores are calculated for each of the four groups (i.e., aloof, passive, active-but- odd, typical) by totaling the scores across the 13 groups of behavior descriptions. The group for which the individual receives the highest sum- mary score is assigned as the overall classification (Castelloe and Dawson

receives the highest sum- mary score is assigned as the overall classification (Castelloe and Dawson 1993).  ### Historical Background The BDQ was first reported in published research by Castelloe and Dawson (1993), and, at that time, the questionnaire was referred to as the Wing Subgroups Questionnaire, as it is based on clinical subgroups within ASD introduced by Wing and Gould (1979). Wing and Gould developed the classifications to help improve understanding of the relationships between typical

developed the classifications to help improve understanding of the relationships between typical autism, mental retardation, and other conditions involving social impairment.  ### Psychometric Data Evidence for the validity and reliability of the BDQ has been provided through the examination of the questionnaire’s internal consistency, the distinct nature of the three clinical subgroups (i.e., aloof, passive, active-but-odd), interrater agreement, and relationships between BDQ results and other

passive, active-but-odd), interrater agreement, and relationships between BDQ results and other concurrent measures. Internal consistency, as measured by Cronbach’s alpha, has been shown to range from .63 for the passive classification to .85 for the active-but-odd category on parent-completed questionnaires. For teacher-completed BDQs, Cronbach’s alpha has been found to range from .54 for passive to .79 for active-but-odd. Clinicians’ assignments of children with ASD to Wing’s groups have been

to .79 for active-but-odd. Clinicians’ assignments of children with ASD to Wing’s groups have been shown to be highly correlated with the results of parent-completed BDQs (Castelloe and Dawson 1993).  Evidence for the distinct nature of the three groups has been found in the strong negative correlation between the aloof and active-but-odd groups ( .70 for parent-completed BDQs and .55 for teacher-completed BDQs) and the low correlations between aloof and passive ( .02 for parent-completed BDQs

BDQs) and the low correlations between aloof and passive ( .02 for parent-completed BDQs and  .04 for teacher- completed BDQs) and between passive and active-but-odd (.17 for parent-completed BDQs and .13 for teacher-completed BDQs; Castelloe and Dawson 1993; O’Brien 1996). However, item analysis has shown that 16 of the 50 items on the BDQ poorly discriminate among the subtypes (O’Brien 1996).  The aloof classification has been shown to be associated with lower IQ, lower receptive lan- guage

The aloof classification has been shown to be associated with lower IQ, lower receptive lan- guage skills, and more severe symptoms of autism (Castelloe and Dawson 1993), as compared to the other two classifications. Significant differences have also been found between the aloof and active-but-odd groups on the Peabody Picture Vocabulary Test and the Vineland Communica- tion and Socialization domains (O’Brien 1996). The passive group has been shown to obtain lower Maladaptive Behavior scores on

(O’Brien 1996). The passive group has been shown to obtain lower Maladaptive Behavior scores on the Vineland and have less physical aggression reported on the Autism Behavior Checklist compared to the other two groups (O’Brien 1996). Wing’s sub- group classifications based on clinicians’ judg- ments have been associated with differences in brain activity measured through electroencepha- lography (EEG; Dawson et al. 1995). In one study, levels of active-but-odd behaviors on the BDQ did not

(EEG; Dawson et al. 1995). In one study, levels of active-but-odd behaviors on the BDQ did not distinguish children with high-functioning autism from a group with ADHD or ODD (Downs and Smith 2004). The ADHD/ODD group actually displayed more aloof behavior than the high-functioning autism group (Downs and Smith 2004).  Interrater reliability coefficients, based on pairs of teachers and teaching assistants completing the BDQ for a particular child, were found to be .60 for the aloof group, .81

assistants completing the BDQ for a particular child, were found to be .60 for the aloof group, .81 for the passive group, .77 for the active-but-odd group, and .78 for the typ- ical group (O’Brien 1996).  ### Clinical Uses The BDQ can be used by clinicians to categorize individuals with ASD as aloof, passive, or active- but-odd and plan intervention goals appropri- ately (Castelloe and Dawson 1993). It has also been used as an outcome measure in clinical intervention research, and BDQ scores

It has also been used as an outcome measure in clinical intervention research, and BDQ scores have been found to change following early interven- tion (Downs et al. 2007). To date, little has been published on the specific clinical uses of the BDQ.  ### See Also *   ▶Active-But-Odd Group *   ▶Aloof Group *   ▶Passive Group *   ▶Wing, Lorna  Castelloe, P., & Dawson, G. (1993). Subclassification of children with autism and pervasive developmental dis- order: A questionnaire based on Wing’s

of children with autism and pervasive developmental dis- order: A questionnaire based on Wing’s subgrouping scheme. Journal of Autism and Developmental Disor- ders, 23, 229–241. Dawson, G., Klinger, L. G., Panagiotides, H., Lewy, A., & Castelloe, P. (1995). Subgroups of autistic children based on social behavior display distinct patterns of brain activity. Journal of Abnormal Child Psychology, 23, 569–583. Downs, A., & Smith, T. (2004). Emotional understanding, cooperation, and social behavior

569–583. Downs, A., & Smith, T. (2004). Emotional understanding, cooperation, and social behavior in high-functioning children with autism. Journal of Autism and Develop- mental Disorders, 34, 625–635. Downs, A., Downs, R. C., Johansen, M., & Fossum, M. (2007). Using discrete trial teaching within a public preschool program to facilitate skill development in students with developmental disabilities. Education and Treatment of Children, 30, 1–27. O’Brien, S. K. (1996). The validity and

Education and Treatment of Children, 30, 1–27. O’Brien, S. K. (1996). The validity and reliability of the Wing Subgroups Questionnaire. Journal of Autism and Developmental Disorders, 26, 321–335. Wing, L., & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Developmental Disorders, 9, 11–29.  ## Behavior Modification Michael D. Powers The Center for Children with Special Needs, Glastonbury,

## Behavior Modification Michael D. Powers The Center for Children with Special Needs, Glastonbury, CT, USA  ### Definition Behavior modification is a treatment approach based on Skinner’s (1938, 1953) principles of oper- ant conditioning. It seeks to establish desirable behavior and reduce or eliminate undesirable behavior through the use of empirically validated procedures, including but not limited to positive and negative reinforcement, extinction, and punish- ment. Behavior modification

limited to positive and negative reinforcement, extinction, and punish- ment. Behavior modification procedures have been used to treat a wide variety of human problems including attention deficit hyperactivity disorder, autism, enuresis and encopresis, fears and phobias, noncompliant behavior, and pica, among others.  ### See Also *   ▶Applied Behavior Analysis (ABA) *   ▶Behavior Therapy *   ▶Negative Reinforcement *   ▶Positive Reinforcement  Martin, G., & Pear, J. (2003). Behavior modification:

Reinforcement *   ▶Positive Reinforcement  Martin, G., & Pear, J. (2003). Behavior modification: What it is and how to do it (7th ed.). Upper Saddle River: Prentice Hall. Skinner, B. F. (1938). The behavior of organisms. New York: Appleton-Century-Crofts. Skinner, B. F. (1953). Science and human behavior. New York: MacMillan.  ## Behavior Observation Scale Sarah Butler1 and Catherine Lord1,2 1Center for Autism and the Developing Brain, New York-Presbyterian Hospital/Westchester Division, White

for Autism and the Developing Brain, New York-Presbyterian Hospital/Westchester Division, White Plains, NY, USA 2UCLA, Los Angeles, CA, USA  ### Synonyms BOS  ### Description The Behavior Observation Scale (BOS) is a clinician-based measure of behaviors associated with autism (Freeman et al. 1978). The authors emphasized that children with autism should be studied within a development context and com- pared to nonspectrum typical and intellectually impaired children to distinguish behaviors

and com- pared to nonspectrum typical and intellectually impaired children to distinguish behaviors spe- cific to autism that are of diagnostic significance (Freeman et al. 1980).  The BOS is a checklist of 67 objectively defined behaviors. The clinician watches the child interact with age-appropriate toys through a one-way mir- ror in the presence of an examiner. The observation consists of recording the frequency of the specified behaviors in nine 3-min intervals. Three-minute baseline periods

the frequency of the specified behaviors in nine 3-min intervals. Three-minute baseline periods are also documented at the begin- ning and end of the play period. The examiner in the room presents the child with standard stimuli for seven of the intervals. During one interval, the examiner actively tries to engage the child through ball play. The behaviors are scored as not present or occurring once, twice, or continuously during the three-minute intervals. When not following these specific

once, twice, or continuously during the three-minute intervals. When not following these specific prompts, the examiner sits in one corner of the room and does not respond to the child if he or she initiates contact (Morgan 1988).  ### Historical Background The BOS was one of the first diagnostic instru- ments for autism. Unlike other diagnostic measures, the BOS was the first autism scale to emphasize the importance of controlling the observed behaviors of a child, as well as the environment in

the importance of controlling the observed behaviors of a child, as well as the environment in which the observation took place. The frequency of these observed behaviors was used to differentiate among diagnostic groups. The appearance of some specific rare behaviors during play was found to be a signifi- cant indicator, suggesting that the quality of some specific behaviors, rather than the frequency, was more important to diagnose children with autism (Lord and Corsello 2005).  ### Psychometric

was more important to diagnose children with autism (Lord and Corsello 2005).  ### Psychometric Data The authors of the first factor analyses of the BOS concluded that it is necessary to create age-specific norms for the frequencies of behav- iors of children with autism. These norms still need to be created comparing age-matched groups of both nonspectrum typical and intellectually impaired children (Freeman et al. 1978).  Some measures of reliability have been com- pleted for the BOS.

children (Freeman et al. 1978).  Some measures of reliability have been com- pleted for the BOS. Interrater reliability of the BOS was assessed with a sample of 89 children, which included 36 with autism and 30 with non- spectrum intellectual disabilities matched for mental age and 23 typically developing children (Freeman et al. 1978). Correlation coefficients for ratings by the observer (watching through a one- way mirror) and the examiner (sitting in the room) were greater than 0.84 for 55 of

through a one- way mirror) and the examiner (sitting in the room) were greater than 0.84 for 55 of the 67 behaviors; the published work did not include the coefficients for the remaining 12 items (Morgan 1988). Internal consistency and test-retest reliability have not been reported for the BOS (Parks 1983).  Various studies have also examined the valid- ity of the BOS. The content validity of the BOS comes from the inclusion of ratable behaviors related to the clinical diagnostic criteria of

BOS comes from the inclusion of ratable behaviors related to the clinical diagnostic criteria of autism. This is demonstrated by a factor analysis performed from three groups of children: those with autism, those without autism but with intel- lectual disability, and those with typical develop- ment (Freeman et al. 1980). According to their analyses, the authors characterize children with autism as exhibiting “inappropriate interactions with people and objects,” the nonspectrum intel- lectually

exhibiting “inappropriate interactions with people and objects,” the nonspectrum intel- lectually impaired group as having “solitary behaviors,” and the typically developing group as showing “appropriate interactions with people and objects” (p. 344).  In order to determine discriminate validity, Free- man and colleagues compared groups of children with autism and children without autism but with intellectual disabilities and found that they only differed on 11 of the 67 behaviors that compose

intellectual disabilities and found that they only differed on 11 of the 67 behaviors that compose the BOS (Freeman et al. 1979). However, the authors point out that the behaviors that did not discriminate between these groups were dependent on the developmental variables of mental and/or chronological age. Freeman and Rivto (1980) com- pared children with autism, cognitively impaired children matched for mental age, and typically developing children matched for chronological age on the BOS.

matched for mental age, and typically developing children matched for chronological age on the BOS. They found that six items differ- entiated the low-IQ autism group from the cogni- tively impaired group. They concluded that the three groups could be discriminated with the BOS if these six items were coded. No studies have examined how well the BOS distinguished between children with autism and children with other behavior problems (Morgan 1988).  ### Clinical Uses The purpose of the BOS is to

with other behavior problems (Morgan 1988).  ### Clinical Uses The purpose of the BOS is to diagnose autism based on objective observation of behavior within a developmental context (Morgan 1988). Though the intention of the authors was to create an agreed-upon diagnostic framework for use in research (Freeman et al. 1978), the BOS is useful clinically as well. Freeman et al. add that the BOS can also be used to document changes in symp- toms over time. Diagnosis and symptom changes are

BOS can also be used to document changes in symp- toms over time. Diagnosis and symptom changes are necessary for providing adequate therapeutic care for any individual with behavioral or cogni- tive difficulties, and the BOS provides the means for obtaining that information.  ### See Also *   ▶Autism Diagnostic Observation Schedule  Freeman, B. J., & Rivto, E. (1980, May). The behavior observation scale for autism (BOS): IQ and behavior of autistic children. Paper presented at the meeting of

scale for autism (BOS): IQ and behavior of autistic children. Paper presented at the meeting of the Western Psychological Association Honolulu. Freeman, B. J., Ritvo, E. R., Guthrie, D., Schroth, P., & Ball, J. (1978). The behavior observation scale for autism: Initial methodology, data analysis, and prelim- inary findings on 89 children. Journal of the American Academy of Child Psychiatry, 17, 576–588. Freeman, B. J., Guthrie, D., Rivto, E. R., Schroth, R., Glass, R., & Frankel, F. (1979).

576–588. Freeman, B. J., Guthrie, D., Rivto, E. R., Schroth, R., Glass, R., & Frankel, F. (1979). Behavior observation scale: Preliminary analysis of the similarities and dif- ferences between autistic and mentally retarded chil- dren. Psychological Reports, 44, 519–588. Freeman, B. J., Schroth, P., Ritvo, E., Guthrie, D., & Wake, L. (1980). The behavior observation scale for autism (BOS): Initial results of factor analysis. Journal of Autism and Developmental Disorders, 10, 343–346. Lord, C.,

results of factor analysis. Journal of Autism and Developmental Disorders, 10, 343–346. Lord, C., & Corsello, C. (2005). Diagnostic instruments in autistic spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 730–771). Hoboken: Wiley. Morgan, S. (1988). Diagnostic assessment of autism: A review of objective scales. Journal of Psychoedu- cational Assessment, 6, 139–151. Parks, S. L. (1983). The

objective scales. Journal of Psychoedu- cational Assessment, 6, 139–151. Parks, S. L. (1983). The assessment of autistic children: A selective review of available instruments. Journal of Autism and Developmental Disorders, 13(3), 255–267.  ## Behavior Plan Jessica Rohrer The Center for Children with Special Needs, Glastonbury, CT, USA  ### Definition A behavior plan (behavior support plan or behavior intervention plan) is an organized plan to aid in the reduction of problem behaviors and/or

intervention plan) is an organized plan to aid in the reduction of problem behaviors and/or increase desired behaviors. Behavior plans are documents which are usually developed by behavior analysts, teachers, counselors, and school psychologists, of with input from the individual themselves and/or their parent. The documents are suitable for imple- mentation in various settings, such as private homes, public or private schools, residential facili- ties, or vocational facilities.  ### Historical

public or private schools, residential facili- ties, or vocational facilities.  ### Historical Background In the 1970s, the primary focus of behaviorism and behavior modification shifted from primarily using aversive procedures to eliminate undesir- able behaviors toward the use of reinforcement- based techniques to increase desired behaviors (Brown 1987). In many ways, this shift increased the quality and effectiveness of behavioral inter- ventions, as they became more widely accepted and

quality and effectiveness of behavioral inter- ventions, as they became more widely accepted and utilized and began to be implemented across individuals with diverse behavioral profiles.  ### Current Knowledge Behavior plans may incorporate various methods of behavior modification and are individualized for each person. The procedures outlined in behavior plans should be developed based on evidence-based techniques, such as functional behavior assessment or experimental functional analysis (see

techniques, such as functional behavior assessment or experimental functional analysis (see Functional Analysis). The behav- ioral functions identified using these methods are then used to develop an appropriate behavior plan. The objectives of developing a behavior plan include identifying and defining target behaviors, recommending procedures to decrease challeng- ing behaviors, and recommending procedures to increase appropriate behaviors or replacement skills.  Behaviors targeted to decrease

procedures to increase appropriate behaviors or replacement skills.  Behaviors targeted to decrease and those targeted to increase must be clearly and operation- ally defined, so that all personnel implementing the plan will do so consistently. These definitions should be observable, clear, concise, and accurate.  If a behavior plan involves procedures to decrease challenging behaviors, it will necessarily include methods to teach or increase appropriate and functionally equivalent responses.

include methods to teach or increase appropriate and functionally equivalent responses.  Behavior plans may include several parts, including antecedent strategies, identified behav- iors to decrease, identified behaviors to increase, reinforcement systems, management strategies, data collection procedures, protocols for monitor- ing effectiveness of interventions, strategies for maximizing generalization and maintenance, and criteria to discontinue.  Antecedent strategies, or antecedent control

and maintenance, and criteria to discontinue.  Antecedent strategies, or antecedent control procedures, are procedures in which antecedents (i.e., environmental cues, discriminative stimuli, establishing operations, or response effort) are manipulated to influence a desired or undesired behavior. Antecedent strategies may include such techniques as clear delivery of directives, breaking tasks down into smaller components, providing and reviewing visual schedules, reviewing contingencies and

down into smaller components, providing and reviewing visual schedules, reviewing contingencies and expectations prior to each task, providing sequencing choices, pro- viding opportunities for sensory activities, deliv- ering reinforcement for appropriate behavior, providing warnings prior to transitions, modify- ing academic tasks to match student’s ability, and making environmental manipulations. These manipulations may include arranging the environment to decrease the likelihood of prob- lem

These manipulations may include arranging the environment to decrease the likelihood of prob- lem behavior (e.g., clearing area of extraneous materials or positioning the individual away from dangerous materials). Antecedent strate- gies can be diverse and individualized for each individual.  Procedures designed to decrease problem behavior and increase replacement skills often include a reinforcement-based system. Examples of positive reinforcement-based systems are token economy systems

system. Examples of positive reinforcement-based systems are token economy systems (based on differential reinforcement), where individuals earn tokens (to be exchanged for identified reinforcers) based on the absence of problem behavior and/or engagement in alternative behaviors. In order to identify effective reinforcers, preference or reinforcer assessments should be conducted. These assessments may be informal, such as interviews or anecdotal reports from parents or caregivers or observation

may be informal, such as interviews or anecdotal reports from parents or caregivers or observation of the individual in various environments to determine where he/she allocates time. Preference or reinforcer assessments can also be formal, using a validated assessment such as a forced-choice preference assessment (Fisher et al. 1992) or multiple- stimulus without replacement (MSWO) prefer- ence assessment (DeLeon and Iwata 1996).  Once reinforcers have been identified, a token economy system

assessment (DeLeon and Iwata 1996).  Once reinforcers have been identified, a token economy system might be considered as a proce- dure within a positive reinforcement-based behavior support plan. A token economy could be based on a DRO (differential reinforcement of other behavior), DRA (differential reinforcement of alternative behavior), or DRI (differential reinforcement of incompatible behavior). In a DRO procedure, reinforcement is delivered solely for the absence of problem behavior,

In a DRO procedure, reinforcement is delivered solely for the absence of problem behavior, whereas in DRA or DRI procedures, reinforcement is delivered contin- gent on the occurrence of an alternative response or one that is incompatible with the target behav- ior. A token system could include tokens that can be physically manipulated by the individual (e.g., stickers, coins, or tickets), or they could simply be checkmarks on a list of completed tasks.  Some positive reinforcement-based

or they could simply be checkmarks on a list of completed tasks.  Some positive reinforcement-based procedures may not be as specific or structured as a differen- tial reinforcement procedure and may not involve tokens at all. That is, direct reinforcement may be delivered on a fixed or variable schedule, contin- gent on appropriate behaviors. Positive reinforcement-based procedures can be implemented on their own or in conjunction with a number of other behavioral intervention procedures.

on their own or in conjunction with a number of other behavioral intervention procedures.  Additional consequence-based interventions may include procedures such as time-out, response blocking or interruption, physical or ver- bal redirection, response cost or removal of priv- ileges, restitution, and overcorrection. These procedures involve various behavioral concepts such as extinction and may utilize principles of punishment. Therefore, they are typically used in conjunction with positive

utilize principles of punishment. Therefore, they are typically used in conjunction with positive reinforcement-based procedures, so as not to focus only on the decrease of aberrant behavior but also the increase of appropriate behavior.  Time-out is a procedure which decreases prob- lem behavior by removing reinforcement contin- gent on the occurrence of the target behavior(s). Time-out can be inclusionary (the individual remains in the same environment) or exclusionary (the individual is

be inclusionary (the individual remains in the same environment) or exclusionary (the individual is removed from the environment in which the behavior occurred). It is a punishment-based procedure because a stimulus (reinforcement) is removed contingent on prob- lem behavior, therefore reducing the future likeli- hood of the occurrence of that behavior.  Response blocking attempts to reduce the reinforcing aspects of the behavior by eliminating contact with the reinforcer. For example, an auto-

aspects of the behavior by eliminating contact with the reinforcer. For example, an auto- matically maintained behavior such as hand flap- ping would be blocked, therefore restricting access to the reinforcing aspects of the behavior. In a response-interruption procedure such as a “hands-down” procedure, the response is interrupted, and the individual is physically redirected to an alternate response (i.e., putting hands down). This procedure may also function due to the principle of punishment,

(i.e., putting hands down). This procedure may also function due to the principle of punishment, as the individ- ual may engage less frequently in the behavior in order to avoid the redirection procedure.  Response cost, or removal of privileges, is another consequence-based procedure where a reinforcer (or multiple reinforcers) is removed contingent upon the occurrence of the target behavior. The future of occurrence of the target behavior is then decreased, as the individual avoids coming in

future of occurrence of the target behavior is then decreased, as the individual avoids coming in contact with this aversive con- tingency. Restitution and overcorrection are typi- cally used with behaviors where the environment is disturbed, such as property destruction, and refer to procedures where, contingent on the prob- lem behavior, the individual is required to restore the environment to its original state. For example, if the individual dumps juice on the floor, he/she would be required

original state. For example, if the individual dumps juice on the floor, he/she would be required to wipe it up. In overcorrection, the individual might be required to not only clean up the spilled juice but also wipe the rest of the floor.  Within any behavior plan should be a defined system for collecting data, including procedures appropriate to the behaviors being measured. Data collection methods may include event recording, duration recording, latency recording, or interval recording. Event

may include event recording, duration recording, latency recording, or interval recording. Event recording refers to a count of behaviors as they occur. When reporting these data, it can be summarized as the total number of behaviors that occurred, the rate of responding (frequency over time), or percentage of the occur- rence of the target behavior as compared to other behaviors. Duration recording refers to how long an individual engages in a certain behavior. This can be reported as total

refers to how long an individual engages in a certain behavior. This can be reported as total duration per episode, per day, or some other specified time period. Latency recording refers to the amount of time between a stimulus and a response. For example, this type of recording may be used to examine how long it takes an individual to respond once an instruction has been given. Interval recording measures the presence or absence of a target behavior within specified time intervals. Whole

measures the presence or absence of a target behavior within specified time intervals. Whole interval, partial interval, and momentary time sampling are all types of interval recording. To determine which data collection method to use, it is important to look at the characteristics of the behavior and select a data collection method that will best rep- resent the feature that is to be examined.  Data collection is a crucial part of an effective behavior plan, as it allows careful analysis of the

collection is a crucial part of an effective behavior plan, as it allows careful analysis of the target behaviors as they are influenced by the interventions put in place. Data sheets can be developed by the author of the behavior plan or by staff or caregivers implementing the plan. Once a data collection system has been established, all staff and caregivers involved in the plan’s implementation must be aware of the procedures. It is important that the terms and methods for data collection have

be aware of the procedures. It is important that the terms and methods for data collection have been reviewed by all people that will be involved in data collec- tion, as this will increase the likelihood that the data collected are valid and useful in analyzing the success of the treatments. All people implementing a behavior support plan should be fully trained in all aspects of the interventions. A system to measure and track treatment fidelity should be in place to minimize procedural drift.

A system to measure and track treatment fidelity should be in place to minimize procedural drift. Procedural drift refers to when, over time, certain interventions or parts of interventions are not car- ried out as they should be. This inconsistency can affect the success of the behavior plan and may result in some or all interventions losing effective- ness. Treatment fidelity checks can minimize pro- cedural drift by putting into place specific measures to evaluate the implementation of the plan

cedural drift by putting into place specific measures to evaluate the implementation of the plan across implementers.  ### Future Directions The individuals who develop behavior plans should always consider the ethical responsibili- ties involved in any behavior modifications and continue to explore positive reinforcement-based methods before those considered more aversive. Behavior Plans should incorporate the input of the individual and/or their parent whenever pos- sible, to ensure a

should incorporate the input of the individual and/or their parent whenever pos- sible, to ensure a person-centered treatment plan. As the field of behavior analysis progresses, behavior plans should incorporate the most recent behavioral technologies to best support individuals. Currently, behavior plans are com- monly utilized in the field of behavior analysis for individuals with autism and other develop- mental disabilities. In the future, behavior plans can be used to guide and support the

develop- mental disabilities. In the future, behavior plans can be used to guide and support the efforts of those who work not only with developmentally disabled individuals but with people of all back- grounds who may benefit from behavioral strategies.  ### See Also *   ▶Applied Behavior Analysis (ABA) *   ▶Positive Behavior Support *   ▶Token Economy  Martin, G., & Pear, J. (2003). Behavior modification: What it is and how to do it (7th ed.). Upper Saddle River: Prentice Hall. Skinner, B. F.

What it is and how to do it (7th ed.). Upper Saddle River: Prentice Hall. Skinner, B. F. (1938). The behavior of organisms. New York: Appleton-Century-Crofts. Skinner, B. F. (1953). Science and human behavior. New York: MacMillan. Brown, D. P. (1987). Hypnosis and behavioral medicine. Hillsdale: Lawrence Erlbaum Associates. Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River: Prentice-Hall. DeLeon, I. G., & Iwata, B. A. (1996). Evaluation of a

analysis. Upper Saddle River: Prentice-Hall. DeLeon, I. G., & Iwata, B. A. (1996). Evaluation of a multiple-stimulus presentation format for assessing reinforcer preferences. Journal of Applied Behavior Analysis, 29, 519–532. Fisher, W., Piazza, C. G., Bowman, L. G., Hagopian, L. P., Owens, J. C., & Slevin, I. (1992). A comparison of two approaches for identifying reinforcers for persons with severe and profound disabilities. Journal of Applied Behavior Analysis, 25, 491–498. Miltonberger, R.

and profound disabilities. Journal of Applied Behavior Analysis, 25, 491–498. Miltonberger, R. G. (2004). Behavior modification princi- ples and procedures (3rd ed.). Belmont: Wadsworth/ Thomson Learning.  ## Behavior Rating Instrument for Autistic and Atypical Children (BRIAAC) Sarah Butler1 and Catherine Lord1,2 1Center for Autism and the Developing Brain, New York-Presbyterian Hospital/Westchester Division, White Plains, NY, USA 2UCLA, Los Angeles, CA, USA  ### Synonyms BRIAAC  ###

Division, White Plains, NY, USA 2UCLA, Los Angeles, CA, USA  ### Synonyms BRIAAC  ### Description The Behavior Rating Instrument for Autistic and other Atypical Children (BRIAAC) was created for the purpose of diagnosing autism (Ruttenberg et al. 1974). The measure was based on observa- tions in a day treatment program of children with autism who had been diagnosed using Kanner’s (1943) autism criteria. The measure consists of eight subscales that are completed by a trained examiner who has

criteria. The measure consists of eight subscales that are completed by a trained examiner who has observed the child for an extensive period of time. The observations lead to descriptive ratings for each subscale within the range characteristic of a 3.5- to 4.5-year-old typically developing child compared to those that are characteristic of a child with severe autism.  ### Historical Background The BRIAAC was one of the earliest measures of autism created shortly after Rimland’s first diag-

The BRIAAC was one of the earliest measures of autism created shortly after Rimland’s first diag- nostic checklist (Lord and Corsello 2005; Rimland 1964). It was the first measure of autism to utilize direct observation of behaviors as described in the case notes of defined raters, mak- ing it a significant milestone of behavior-based measures (Parks 1983).  ### Psychometric Data The BRIAAC consists of eight scales that are developmentally ordered, with the lowest level representing behaviors

of eight scales that are developmentally ordered, with the lowest level representing behaviors uniquely associated with autism and the highest level representing devel- opmental accomplishments typical of normal 4-year-old children. The scales are communica- tion, drive for mastery, vocalization and expres- sive speech, sound and speech reception, body movement, social functioning, psychosexual development, and relationship; in the 1977 edi- tion, social functioning and psychosexual devel-

development, and relationship; in the 1977 edi- tion, social functioning and psychosexual devel- opment were renamed social responsiveness and psychobiological development, respectively (Ruttenberg et al. 1974). The purpose behind the scoring system is to reflect the entire range of possible behavior and the importance of each behavior within this range (Ruttenberg et al. 1966).  The interrater reliability of the original version of the BRIAAC was examined using trained stu- dents as raters

reliability of the original version of the BRIAAC was examined using trained stu- dents as raters (Ruttenberg et al. 1966). Spearman rank correlation coefficients for the four-core scales ranged from 0.85 to 0.88, demonstrating high agreement among raters. However, since all of the children observed had been previously diagnosed with autism, the high reliability does not indicate the ability to diagnose autism accu- rately with the BRIAAC (Ruttenberg et al.).  Two of the authors also examined

diagnose autism accu- rately with the BRIAAC (Ruttenberg et al.).  Two of the authors also examined the BRIAAC’s interrater reliability using the scores of 113 children with autism as determined by seven different pairs of raters (Wenar and Ruttenberg 1976). The correlation coefficients ranged from 0.85 to 0.96 across the eight scales, indicating moderate interrater reliability, as they did not control for response frequencies.  Factor analysis completed by Wenar and Ruttenberg also supported

control for response frequencies.  Factor analysis completed by Wenar and Ruttenberg also supported internal consistency because they found a high loading on one factor, which they described as resistance to participation in activities, such as interacting with others or the environment (1976). Cohen et al. also performed factor analysis and similarly found that the same factor accounted for 69% of the variance. All scales, except psychosexual development, loaded at 0.80 or higher, suggesting

of the variance. All scales, except psychosexual development, loaded at 0.80 or higher, suggesting high internal consistency (Cohen et al. 1978). This shows that the test is, in fact, measuring a unity factor, lead- ing to high internal consistency.  Both the items and the subscales of the BRIAAC were based on frequent observations of children with autism in a daycare center by a highly trained team of specialists. Their observa- tions were incorporated into the items and scales, resulting in

team of specialists. Their observa- tions were incorporated into the items and scales, resulting in good content validity (Wenar and Ruttenberg).  The BRIAAC presumably has good construct validity because it is based on Kanner’s autism criteria (1943), and the children observed were diagnosed according to those same criteria (Morgan 1988). In addition, as previously men- tioned, factor analysis demonstrated that the BRIAAC does examine one core factor, the resis- tance to engage with others and

that the BRIAAC does examine one core factor, the resis- tance to engage with others and the environment (Wenar and Ruttenber; Cohen et al.).  Concurrent validity was studied by comparing the BRIAAC scores and clinicians’ ratings of 26 children either with autism or typical develop- ment (Wenar and Ruttenberg). Significant corre- lations were established between the clinicians’ rating and the total BRIAAC scores (r ¼.69) and three subscale scores (relationship to an adult, r ¼.43; vocalization

BRIAAC scores (r ¼.69) and three subscale scores (relationship to an adult, r ¼.43; vocalization and expressive speech, r ¼.64; sound and speech reception, r ¼.65). The authors viewed the examined concurrent validity as satisfactory and expressed the desire to examine the remaining subscales in the future.  Cohen et al. examined the discriminant validity of the BRIAAC and found that the total scores did not effectively discriminate among the diag- nostic groups of primary-childhood autism,

scores did not effectively discriminate among the diag- nostic groups of primary-childhood autism, secondary-childhood autism, early-childhood psychosis, developmental aphasia, and mental retardation (1978).  ### Clinical Uses The scoring system that addresses the whole range of possible behaviors is clinically relevant because it identifies both signs of progress and problem behaviors (Ruttenberg et al. 1966). These areas of needed improvement can be spe- cific for each child evaluated. In

et al. 1966). These areas of needed improvement can be spe- cific for each child evaluated. In addition, the levels of the scales assist in planning therapeutic programs for children with autism because they indicate upcoming developmental steps and how therapy can progress to meet the child’s develop- mental needs.  ### See Also *   ▶Autism Diagnostic Observation Schedule *   ▶Behavior Observation Scale  American Psychiatric Association. (1980). Diagnostic and statistical manual of mental

Scale  American Psychiatric Association. (1980). Diagnostic and statistical manual of mental disorders (3rd ed.). Washington, DC: Author. Cohen, D. J., Caparulo, B. K., Gold, J. R., Waldo, M. C., Shaywitz, B. A., Ruttenberg, B. A., & Rimland, B. (1978). Agreement in diagnosis: Clinical assessment and behavior rating scales for pervasively disturbed children. Journal of the American Academy of Child Psychiatry, 17(3), 589–603. Kanner, L. (1943). Autistic disturbances of affective con- tact. The

Psychiatry, 17(3), 589–603. Kanner, L. (1943). Autistic disturbances of affective con- tact. The Nervous Child, 2, 217–250. Lord, C., & Corsello, C. (2005). Diagnostic instruments in autistic spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 730–771). Hoboken: Wiley. Morgan, S. (1988). Diagnostic assessment of autism: A review of objective scales. Journal of Psychoedu- cational Assessment, 6,

assessment of autism: A review of objective scales. Journal of Psychoedu- cational Assessment, 6, 139–151. (ed.). (730–771). Hoboken: Wiley. Parks, S. L. (1983). The assessment of autistic children: A selective review of available instruments. Journal of Autism and Developmental Disorders, 13(3), 255–267. Rimland, B. (1964). Infantile Autism: The syndrome and its implications for a neural theory of behavior (2nd print- ing). New York: Appleton-Centrury-Crofts. Ruttenberg, B. A., Dratman, M. L.,

behavior (2nd print- ing). New York: Appleton-Centrury-Crofts. Ruttenberg, B. A., Dratman, M. L., Fraknoi, J., & Wenar, C. (1966). An instrument for evaluating autistic chil- dren (BRIAC). Journal of the American Academy of Child Psychiatry, 5, 453–478. Ruttenberg, B. A., Kalish, B. I., Wenar, C., & Wolf, E. G. (1974). Behavior rating instrument for autistic and other atypical children (rev. ed.). Philadelphia: Devel- opmental Center for Autistic Children. Wenar, C., & Ruttenberg, B. A. (1976).

Philadelphia: Devel- opmental Center for Autistic Children. Wenar, C., & Ruttenberg, B. A. (1976). The use of BRIAC for evaluating therapeutic effectiveness. Journal of Autism and Childhood Schizophrenia, 6, 175–191. Wenar, C., Ruttenberg, B. A., Kalish-Weiss, B., & Wolf, E. G. (1986). The development of normal and autistic children: A comparative study. Journal of Autism and Developmental Disorders, 16, 317–333.  ## Behavior Rating Scale (BRS) Sarah Butler1 and Catherine Lord1,2 1Center for

16, 317–333.  ## Behavior Rating Scale (BRS) Sarah Butler1 and Catherine Lord1,2 1Center for Autism and the Developing Brain, New York-Presbyterian Hospital/Westchester Division, White Plains, NY, USA 2UCLA, Los Angeles, CA, USA  ### Synonyms BRS  ### Description The Behavior Rating Scale (BRS) is a subtest within the Bayley Scales of Infants Develop- ment, which is an assessment frequently used to assess the development of infants and children, including those with a diagnosis of autism. It is

assess the development of infants and children, including those with a diagnosis of autism. It is a norm-referenced assessment that was first published in 1969 and later revised in 1993 and provides standard mental and motor indices and a developmental age equivalent for children 2 months to 2.5 years old. The Bayley Scales of Infants Development consists of two subtests in addition to the BRS: the mental development index (MDI) and the psychomotor development index (PDI). The BRS is a form for

mental development index (MDI) and the psychomotor development index (PDI). The BRS is a form for the evaluator to rate the child’s behavior throughout testing, including the ability to pay attention, social engagement, affect and emotions, and the quality of movement and motor control. The BRS, pre- viously known as the infant behavior record (IBR), underwent many changes for the second edition, including a revamp in format and a new scoring system.  The examiner completes the BRS after the

including a revamp in format and a new scoring system.  The examiner completes the BRS after the other two components of the Bayley are assessed (Nellis and Gridley 1994). The examiner also solicits from the parent or caregiver additional information about the tasks and the session as a whole. This includes whether the child’s behavior was typical during the session and if the child’s performance on the tasks reflected his or her abil- ities. This information is not included in the BRS score,

on the tasks reflected his or her abil- ities. This information is not included in the BRS score, but aids in evaluating the accuracy of those scores. The BRS scores can be interpreted at four different levels: total scores, factor scores, item analysis, and comparisons with the other two tests within the Bayley. The total score compares the child with same-aged peers. Factor scores vary depending on age and are described by qualitative labels.  ### Historical Background The BRS was previously

on age and are described by qualitative labels.  ### Historical Background The BRS was previously known as the infant behavior record (IBR) in the original version of the Bayley Scales of Infant Development (Bayley 1969). Since its creation, the Bayley has remained one of the most standardized and widely used measures for determining the developmental skills of infants and children in both clinical and research settings (Wolf and Lozoff 1985; Klin et al. 2005).  ### Psychometric Data The Bayley

and research settings (Wolf and Lozoff 1985; Klin et al. 2005).  ### Psychometric Data The Bayley provides a method for obtaining age- equivalent scores for four facets of development, cognitive, language, social, and motor, but empirical evidence for their validity is limited (Bayley 1993). The authors of the Bayley revi- sion (1993) found that the test has excellent sta- tistical properties and sensitivity to high-risk childhood conditions, but its value for assessing young children with

and sensitivity to high-risk childhood conditions, but its value for assessing young children with autism is limited (Klin et al. 2005). Children with autism typically present with a varied profile of skills, with higher level nonverbal problem-solving abilities, lower level expressive language, and lowest scores in recep- tive language. Consequently, any composite index score summarizing performance across domains will misrepresent a child’s developmen- tal profile, indicating that the actual

across domains will misrepresent a child’s developmen- tal profile, indicating that the actual profile with varied skill levels is more informative than any composite scores.  The BRS contains 30 items that rate the child’s relevant test-taking behaviors and simultaneously measures attention/arousal, orientation/engage- ment, emotional regulation, and motor quality (Bayley 1993). The scoring of the BRS is based on rank values and has a five-point ordinal scale for each behavior. There is limited

BRS is based on rank values and has a five-point ordinal scale for each behavior. There is limited psychometric data for the BRS, as most analyses have been completed on the Bayley as a whole. The authors of the revised edition of the Bayley found that total scores were more highly correlated for the older age range (r ¼ 0.88) than for the younger age range (r ¼ 0.70), but concluded that the interrater reliability for the BRS was fairly high for an observation-based measure (Bayley 1993, as

reliability for the BRS was fairly high for an observation-based measure (Bayley 1993, as cited in Koseck 1999).  ### Clinical Uses The Bayley is particularly relevant in clinical set- tings with children suspected of having a devel- opmental delay because it can both identify the presence of a developmental delay and provide information to help the caregiver know which services are necessary to help the child (Washington 1998). It is a relevant measure for children demonstrating signs of

to help the child (Washington 1998). It is a relevant measure for children demonstrating signs of autism because it tests a wide variety of behaviors across different domains, but it is most informative when the entire profile is assessed, rather than the total scores (Klin et al. 2005). Another reason that the Bayley is frequently used with children with developmental delays is that the testing materials are of interest for these children and can hold their attention (Nellis and Gridley 1994).

are of interest for these children and can hold their attention (Nellis and Gridley 1994). These quali- ties of the Bayley and the BRS make the measure highly informative in both clinical and research settings.  ### See Also *   ▶Autism Screening Instrument for Educational Planning (ASIEP-2)  Bayley, N. (1969). Bayley scales of infant development. New York: Psychological Corporation. Bayley, N. (1993). Bayley scales of infant development (2nd ed.). San Antonio: Psychological Corporation. Klin,

Bayley scales of infant development (2nd ed.). San Antonio: Psychological Corporation. Klin, A., Saulnier, C., Tsatsanis, K., & Volkmar, F. (2005). Clinical evaluation in autism spectrum disorders: Psy- chological assessment within a transdisciplinary frame- work. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmen- tal disorders (3rd ed., pp. 730–771). Hoboken: Wiley. Koseck, K. (1999). Review and evaluation of psychomet- ric properties of the

Hoboken: Wiley. Koseck, K. (1999). Review and evaluation of psychomet- ric properties of the revised Bayley scales of infant development. Pediatric Physical Therapy, 11(4), 198–204. Nellis, L., & Gridley, B. E. (1994). Review of the Bayley Scales of Infant Development (2nd ed.). Journal of School Psychology, 32(2), 201–209. Washington, K. (1998). The Bayley scales of infant development-II and children with developmental delays: A clinical perspective. Journal of Developmen- tal and Behavioral

with developmental delays: A clinical perspective. Journal of Developmen- tal and Behavioral Pediatrics, 19(5), 346–349. Wolf, A. W., & Lozoff, B. (1985). A clinically interpretable method for analyzing the Bayley infant behavior record. Journal of Pediatric Psychology, 10(2), 199–214.  ## Behavior Rehearsal Rebecca Munday The Center for Children with Special Needs, Glastonbury, CT, USA  ### Definition Behavior rehearsal involves practicing appropri- ate behavior responses within social

Definition Behavior rehearsal involves practicing appropri- ate behavior responses within social situations. There are many methods for rehearsing social behaviors. One method may include individuals imagining or thinking about themselves performing and responding appropriately to others. A second method may include individuals practicing social interactions through describing them verbally to others. A third method may include role-playing. With all methods, building fluency through repeated

others. A third method may include role-playing. With all methods, building fluency through repeated rehearsal is vital to achieving success and increasing appropriate social skills.  ### See Also *   ▶Behavior  Morgan, R. L., & Salzberg, C. L. (1992). Effects of video- assisted training on employment-related social skills of adults with severe mental retardation. Journal of Applied Behavior Analysis, 25, 365–383. Sarokoff, R., & Sturney, P. (2004). Effects of behavior skills training on staff

25, 365–383. Sarokoff, R., & Sturney, P. (2004). Effects of behavior skills training on staff implementation of discrete trial teaching. Journal of Applied Behavior Analysis, 37, 535–538.  ## Behavior Summarized Evaluation-Revised (BSE-R) Bernadette Rogé CERPPS, Université Toulouse Jean Jaurès, Toulouse, France CeRESA (Centre Régional d’Education et de Services pour l’Autisme), Institut Universitaire de France (IUF), Toulouse, France  ### Synonyms BSE; BSE-R; IBSE  ### Description The Behavior

de France (IUF), Toulouse, France  ### Synonyms BSE; BSE-R; IBSE  ### Description The Behavior Summarized Evaluation-Revised (BSE-R) is a psychometric instrument designed for research and clinical purposes. The current version includes 29 items that enable the formalization of behavior observations in the different domains in which specifically autistic difficulties occur. These domains are touch, eye contact and com- munication, motor behavior, perception, and imi- tation. Coding is based on the

contact and com- munication, motor behavior, perception, and imi- tation. Coding is based on the observations collected by a person who is regularly in touch with the child. The observations are performed in the different situations of daily life by all of the persons who work with the child. A glossary describes briefly the content of each item, which is rated on a 5-point scale ranging from 0 ¼ never to 4 ¼ continuously. The item is rated 0 if the behavior never appears, 1 if it sometimes

0 ¼ never to 4 ¼ continuously. The item is rated 0 if the behavior never appears, 1 if it sometimes appears, 2 if often, 3 if very often, and 4 if it is always present. Thus, the total score indicates both the frequency of the behavior disorders and the inten- sity of the pathology.  ### Historical Background Professor Gilbert Lelord and his colleagues designed the first BSE version in 1975 (Laffont et al. 1975). The purpose of this version was to correlate clinical variables with

in 1975 (Laffont et al. 1975). The purpose of this version was to correlate clinical variables with electrophysiolog- ical variables. The studies using this scale have demonstrated that certain clinical characteristic such as indifference to others or resistance to change was related to electrophysiological signs such as the low amplitude of the potentials elicited in response to sensory stimuli. The major interest of this technique is to provide a framework for observations that can be

The major interest of this technique is to provide a framework for observations that can be repeated in different con- texts and at different times in the child’s development. Later, several successive versions involving a varying number of items were developed. The factor analysis provided the means for the classi- fication of the test items into categories. The 1990 version involved 20 items (Barthelemy et al. 1990). Nine items were later added to the revised version (Barthelemy et al. 1997).

et al. 1990). Nine items were later added to the revised version (Barthelemy et al. 1997). A specific version has been developed for infancy and preschool years based on the BSE, and 13 items have been added to describe early manifestations of autism (The infant BSE: IBSE, Adrien et al. 1992).  ### Psychometric Data The BSE-R has been validated in a research led by Catherine Barthelemy and her colleagues (Barthelemy et al. 1997); 136 children with autism were included in this study.  ####

colleagues (Barthelemy et al. 1997); 136 children with autism were included in this study.  #### Inter-rater Reliability For the inter-rater reliability study, 29 children (21 boys and 8 girls) were observed and their behaviors assessed with the BSE by two separate groups of nurses trained to use the instrument. The total score reliability was very high (0.97). Reli- ability measures were calculated for each item. Three items (1, 10, 29) also had high reliability (0.75–1.0); ten items (2, 4, 5,

for each item. Three items (1, 10, 29) also had high reliability (0.75–1.0); ten items (2, 4, 5, 6, 9, 12, 14, 20, 27, 28) had good reliability (0.60–0.74); and 12 items (3, 7, 8, 11, 13, 15, 16, 19, 21, 23, 24, 26) had fair reliability (0.40–0.59). Only four items (17, 18, 22, 25) had a low reliability and were therefore excluded from the other analyses.  A factor analysis was performed on the BSE-R results for the 136 children. Six factors were extra- cted. Two factors accounted for more than

results for the 136 children. Six factors were extra- cted. Two factors accounted for more than 10% of the total variance. Combined, they accounted for a total of 48, 6% of the total variance. The two most loaded factors were labeled “interaction disorder” (items 1, 2, 3, 4, 5, 6, 8, 9, 12, 23, 24, 26, 28) and “modulation disorder” (item 11, 13, 16). A negative correlation was found between the BSE-R score for Factor 1 and Development Quo- tient. This means that the higher the BSE-R score, the

score for Factor 1 and Development Quo- tient. This means that the higher the BSE-R score, the lower the DQ was. No correlation was found for Factor 2 and the DQ.  A criterion validity study was performed on the BSE-R scores for all 136 children. The external criterion was the Expert Severity Score (ESS). This was based on the observation of two experi- enced staff psychiatrists who were blind to the BSE-R score. The ESS ranged from 1 (minimum) to 5 (maximum). A glossary was available, and for

the BSE-R score. The ESS ranged from 1 (minimum) to 5 (maximum). A glossary was available, and for that reason, the ESS had an excellent reliability. Three diagnostic groups were constituted: Autis- tic Disorders (AD), Pervasive Developmental Disorders Not Otherwise Specified (PDDNOS), and Mental Retardation (MR). A solid relation between the BSE-R score and the ESS was found. Because BSE-R Factor 1 items signifi- cantly correlated with the DQ, the variance explained by the DQ was controlled.

1 items signifi- cantly correlated with the DQ, the variance explained by the DQ was controlled. Each BSE-R Factor Item and BSE Factor 1 score cor- related with the ESS. However, the ESS did not correlate with Factor 2 of the BSE-R.  #### Convergent Validity Study Seventy-five children were assessed with the Rimland E2 scale. The same subgroups were selected (AD ¼ 51 children; PSSNOS ¼ 8 chil- dren; MR ¼ 16 children). Significant differences existed between the three diagnostic subgroups for the

MR ¼ 16 children). Significant differences existed between the three diagnostic subgroups for the ESS. Correlations were calculated between the BSE-R score for Factor 1, Factor 2, and Rimland E2 score. A significant correlation was found between the BSE-R score for Factor 1 and the Rimland score (0.41). But there was no significant correlation between the BSE-R score for Factor 2 and the Rimland score. Convergent validity was also confirmed in the study by Oneal et al. (2006), where the BSE scores

Convergent validity was also confirmed in the study by Oneal et al. (2006), where the BSE scores correlated highly with the CARS, a well-validated instrument.  #### Sensitivity and Specificity Study Thanks to a ROC analysis, a cutoff of 27 was determined. This score permits a discrimination between autistic children (AD) and nonautistic children (MR + PDDNOS) with a sensitivity of 0.74 and a specificity of 0.71. Other previously published results concern the first version of the BSE and can be

of 0.71. Other previously published results concern the first version of the BSE and can be found in different papers (Barthelemy et al. 1990; Reeb et al. 2009).  Recently, a validation study of this scale was carried out in a Lebanese population (Hreich et al. 2016). The scale was first translated into Arabic, and then a back translation was performed. Hundred children with ASD (age range, 35–153 months; DS, 28.0) were evalu- ated. Their diagnosis was based on DSM4 criteria. The severity of

months; DS, 28.0) were evalu- ated. Their diagnosis was based on DSM4 criteria. The severity of their disorders was mea- sured with CARS. Fifty-eight percent of them had an intellectual disability. Inter-rater fidelity was excellent. The study of internal validity revealed a main factor related to the severity of autistic symptoms (internal consistency of 0.91 in a one-to-one setting and 0.92 in group set- tings). The external validity was evaluated by the correlation with the CARS score. This

group set- tings). The external validity was evaluated by the correlation with the CARS score. This study confirmed that the main factor is essentially determined by ASD severity, not by the severity of ID. This factor was named “relational defi- ciency” according to the initial paper of Barthélémy et al. (1997). In this paper, it is con- firmed that BSE-R in Arabic is a practical tool, useful to all team members working with ASD children in Lebanon and the Arab countries. It also allows future

all team members working with ASD children in Lebanon and the Arab countries. It also allows future research based on reliable tools at an international level.  ### Clinical Uses As already indicated, the BSE-R was designed for research and clinical purposes. As the validity and stability of the results obtained with the BSE-R were confirmed, several studies using this instrument were led mainly by Catherine Barthelemy’s team.  #### Biological Measures Initially, research studies were conducted

Catherine Barthelemy’s team.  #### Biological Measures Initially, research studies were conducted using the first version (BSE). The objective was to eval- uate the severity of behavioral problems in autistic children and to assess the correlations with bio- logical markers. Hameury et al. (1995) using the BSE and other measures distinguished four groups in a population of 202 subjects. Group 1 included subjects with severe autistic behavior, profound mental retardation, and severe neurolog-

included subjects with severe autistic behavior, profound mental retardation, and severe neurolog- ical symptoms. Group 2 included subjects pre- senting autistic behavior, language, and communication disorders, with slight or moderate intellectual impairment and mild neurological symptoms. Group 3 included children with severe intellectual impairment and neurological symp- toms with no or few autistic behavior patterns. In Group 4, subjects showed multiple but mild dis- orders. The biochemical

behavior patterns. In Group 4, subjects showed multiple but mild dis- orders. The biochemical parameters of the four groups were compared. The levels of HVA (homovanillic acid) measured in urine samples varied significantly, and Group 3 presented a very high level of HVA compared to the other groups. The authors declare that this approach could make possible the establishment of sub- groups in which behavioral clinical profiles could correspond to certain biological profiles (with metabolic

in which behavioral clinical profiles could correspond to certain biological profiles (with metabolic characteristics).  Other studies have been undertaken with the BSE revised version. Roux et al. (1997) examined relations between electrophysiological reactivity and BSE-R. In a population of 73 children, they showed that the item “bizarre responses to audi- tory stimuli” was correlated with abnormalities in frontocentroparietal electrophysiological reactiv- ity, and that the item “unstable

in frontocentroparietal electrophysiological reactiv- ity, and that the item “unstable attention or easily distracted” corresponded to abnormalities in fron- tal electrophysiological reactivity.  Hérault et al. (1996) also used the BSE-R in a study on urinary levels of serotonin. No relationship was found between molecular biol- ogy results and clinical scores.  Bruneau et al. (2003) studied relations between late auditory-evoked potentials recorded in the temporal area and autism severity

relations between late auditory-evoked potentials recorded in the temporal area and autism severity based on BSE- R. They observed a negative correlation between the importance of the right temporal response and the BSE-R score. The greater amplitude of the right temporal responses corresponded to lower (less severe) BSE-R scores on items involving verbal and nonverbal communication skills.  Gomot et al. (2011) examined neural basis of auditory change-detection in children with autism spectrum

et al. (2011) examined neural basis of auditory change-detection in children with autism spectrum disorders (N ¼ 27) through electrophys- iological patterns (MMN, P3a). They wanted to test whether these electrophysiological patterns were quantitatively related to intolerance of change (using the BSE-R scale). Children with ASD displayed significantly shorter MMN latency and larger P3a than controls, indicating a greater tendency to switch attention to deviant events. These electrophysiological

indicating a greater tendency to switch attention to deviant events. These electrophysiological abnormalities were significantly more marked in children with greater difficulties in tolerating change. It is there- fore confirmed that there is a relationship between the electrophysiological patterns of auditory change-detection and the clinical signs of intoler- ance to change.  Guimard-Brunault et al. (2013) used eye track- ing to compare spontaneous visual attention to a screen displaying a face

(2013) used eye track- ing to compare spontaneous visual attention to a screen displaying a face or an object between children with autism and controls. This study was carried out in a nonconstraint condition. The visual exploration time was measured during pas- sive viewing of static images of faces or objects. The assessment of subjects with autism was conducted with the CARS and the BSE-R. In children with autism, time exploring face screen and time exploring object screen were lower than in

with autism, time exploring face screen and time exploring object screen were lower than in control subjects. They were not correlated with intensity of distractibility. No interaction was found between group and type of image on time spent exploring screen. Only time spent in explor- ing face was correlated with autism symptom severity and gaze impairment.  As the BSE-R is included in the routine assessment of patients in Tours Child Psychiatry Unit, clinical data gathered are available for

assessment of patients in Tours Child Psychiatry Unit, clinical data gathered are available for other studies in different fields such as genetics (Mbarek et al. 1999).  #### Sensitivity to Treatment Effects The BSE and later the BSE-R have been used to evaluate the evolution of children receiving dif- ferent kinds of treatment. In a study published in 1989, Barthelemy et al. examined the modifica- tions in the BSE scores of 27 children receiving exchange and development therapy over a period of

tions in the BSE scores of 27 children receiving exchange and development therapy over a period of 1–2 years. Different diagnostic subgroups were included (autism, mental retardation, atypical per- vasive developmental disorder, developmental delay without autism). The pre- and post-mean BSE scores were compared. The decrease in the scores is interpreted as an improvement. In another study, Barthelemy et al. (1989) assessed changes in BSE scores and biochemical markers in 13 children with

Barthelemy et al. (1989) assessed changes in BSE scores and biochemical markers in 13 children with autism receiving medication. Significant decreases were observed in a BSE item in responders who also showed significant modifications in serotonin and dopamine levels (Barthelemy et al. 1997). In this study, the treat- ment lasted 9 months. A significant decrease in BSE-R scores was noted. Other studies (Lelord et al. 1981; Martineau et al. 1988) were led with the BSE as an indicator of improvement.

(Lelord et al. 1981; Martineau et al. 1988) were led with the BSE as an indicator of improvement. These trials are summarized in Reeb et al. (2009).  In a study carried out by Blanc et al. in 2013, changes induced by EDT (behavior, development, and functioning) were measured at follow-up using the BSE-R among other tools. Thirty-five children with a severe autism associated with a developmental delay followed for 9 months showed improvement in the capacity of exchange and communication.  All

delay followed for 9 months showed improvement in the capacity of exchange and communication.  All these studies suggest that the BSE and the BSE-R are sensitive to treatment effects. How- ever, the number of children included in these trials was usually small and there was no control group. Thus, all these results must be considered with caution.  #### Family Home Movies: Early Signs The IBSE has been used in research on early signs based upon family home movies (Adrien et al. 1993). The

has been used in research on early signs based upon family home movies (Adrien et al. 1993). The family movies of 12 autistic children and 12 typically developing children were analyzed using the IBSE. Two diagnostic-blind raters scored the films. The order of presentation of the videotapes was randomized. The scoring was performed for two different periods, the first and second year, in order to compare the signs observed during these two periods. The analysis of these family movies led to

to compare the signs observed during these two periods. The analysis of these family movies led to finding specific behaviors that enabled the prediction of the autism diagnosis.  #### Parents’ Rating of Improvement The BSE is a simple, easy-to-manage tool that has been used for the assessment of improvement by the parents themselves (Oneal et al. 2006). The results show that the BSE presents acceptable psychometric qualities for parent usage when assessing changes in the child’s behavior.  The

psychometric qualities for parent usage when assessing changes in the child’s behavior.  The BSE-R is an interesting instrument. It has been validated and can be used in different con- texts by professionals from different fields as well as by parents. It can be useful to identify the symptoms of autism, to follow the changes in the expression of these symptoms across age, and to measure the effects of treatment.  Adrien, J. L., Barthelemy, C., Perrot, A., Roux, S., Lenoir, P., Hameury, L., et

of treatment.  Adrien, J. L., Barthelemy, C., Perrot, A., Roux, S., Lenoir, P., Hameury, L., et al. (1992). Validity and reliability of the infant behavioral summarized evaluation (IBSE): A rating scale for the assessment of young children with autism and developmental disorders. Journal of Autism and Developmental Disorders, 22, 375–394. Adrien, J., Lenoir, P., Martineau, J., Perrot, A., Hameury, L., Larmande, C., et al. (1993). Blind ratings of early symptoms of autism based upon family home

L., Larmande, C., et al. (1993). Blind ratings of early symptoms of autism based upon family home movies. Journal of the American Academy of Child and Ado- lescent Psychiatry, 32, 617–626. Barthelemy, C., Bruneau, N., Jouve, J., et al. (1989). Uri- nary dopamine metabolites as indicators of the respon- siveness to fenfluramine treatment in children with autistic behavior. Journal of Autism and Developmen- tal Disorders, 19(2), 241–254. Barthelemy, C., Adrien, J. L., Tangay, P., Garreau, B.,

Developmen- tal Disorders, 19(2), 241–254. Barthelemy, C., Adrien, J. L., Tangay, P., Garreau, B., Fermanian, J., Roux, S., et al. (1990). The behavioural summarized evaluation: Validity and reliability of a scale for the assessment of Autistic behaviours. Journal of Autism and Developmental Disorders, 20, 189–203. Barthelemy, C., Adrien, J. L., Roux, S., Garreau, B., Perrot, A., & Lelord, G. (1992). Sensitivity and specificity of the behavioural summarized evaluation (BSE) for the assessment of

Sensitivity and specificity of the behavioural summarized evaluation (BSE) for the assessment of Autistic behaviours. Journal of Autism and Developmental Disorders, 22(1), 23–31. Barthélémy C., Roux S., Adrien J. L., Hameury L., Guérin P., Garreau B., Fermanian J., & Lelord G. (1997). Validation of the revised behaviour summarized evalu- ation scale (BSE-R). Journal of Autism and Develop- mental Disorders, 27(2), 139–153. Blanc, R., Malvy, J., Dansart, P., Bataille, M., Bonnet- Brilhault, F., &

27(2), 139–153. Blanc, R., Malvy, J., Dansart, P., Bataille, M., Bonnet- Brilhault, F., & Barthélémy, C. (2013). La thérapie d’échange et de développement, une rééducation neurofonctionnelle de la communication sociale. Neuropsychiatrie de l’Enfance et de l’Adolescence, 61(5), 288–294. Bruneau, N., Bonnet-Brilhault, F., Gomot, M., Adrien, J.- L., & Barthelemay, C. (2003). Cortical auditory pro- cessing and communication in children with autism: Electrophysiologically behavioral relations.

cessing and communication in children with autism: Electrophysiologically behavioral relations. Interna- tional Journal of Psychophysiology, 51, 17–25. Gomot, M., Blanc, R., Clery, H., Roux, S., Barthelemy, C., & Bruneau, N. (2011). Candidate electrophysiological endophenotypes of hyper-reactivity to change in Autism. Journal of Autism and Developmental Disor- ders, 41(6), 705–714. https://doi.org/10.1007/s10803- 010-1091-y. Guimard-Brunault, M., Hernandez, N., Roche, L., Roux, S., Barthelemy,

010-1091-y. Guimard-Brunault, M., Hernandez, N., Roche, L., Roux, S., Barthelemy, C., Martineau, J., & Bonnet-Brilhault, F. (2013). Back to basic: Do children with autism spontaneously look at screen displaying a face or an object? Autism Research and Treatment. https://doi. org/10.1155/2013/835247:835247. Hameury, L., Roux, S., Barthelemy, C., Adrien, J. L., Desombre, H., Sauvage, D., et al. (1995). Quantified multidimensional assessment of autism and other per- vasive developmental disorders.

Quantified multidimensional assessment of autism and other per- vasive developmental disorders. Application for bioclinical research. European Child & Adolescent Psychiatry, 4(2), 123–135. Hérault, J., Petit, E., Martineau, J., Cherpi, C., Perrot, A., Barthelemy, C., et al. (1996). Serotonin and autism: Biochemical and molecular biology features. Psychia- try Research, 65, 33–43. Hreich, E. K., Messarra, C., Roux, S., Barthélémy, C., & Richa, S. (2016). Validation in Arabic of the revised

K., Messarra, C., Roux, S., Barthélémy, C., & Richa, S. (2016). Validation in Arabic of the revised autistic behavior summarized evaluation scale (BSE-R). Encephale. https://doi.org/10.1016/j.encep. 2016.04.013. Laffont, F., Jusseaume, P., Bruneau, N., Dubost, P., & Lelord, G. (1975). Conditionnement des potentiels évoqués chez des enfants normaux, retardés mentaux et autistiques. Revue d’Electroencephalographie et de Neurophysiologie, 5, 369–374. Lelord, G., Müh, J. P., Barthelemy, C.,

et de Neurophysiologie, 5, 369–374. Lelord, G., Müh, J. P., Barthelemy, C., Martineau, J., Garreau, B., & Callaway, E. (1981). Effects of pyridox- ine and magnesium on autistic symptoms. Initial obser- vations. Journal of Autism and Developmental Disorders, 11, 219–230. Martineau, J., Barthelemy, C., Cheliakine, C., & Lelord, G. (1988). Brief report: An open middle-term study of combined vitamin B6-magnesium in a subgroup of autistic children selected on their sensitivity to this treatment.

B6-magnesium in a subgroup of autistic children selected on their sensitivity to this treatment. Journal of Autism and Developmental Dis- orders, 18, 435–447. Mbarek, O., Marouillat, S., Martineau, J., Barthelemy, C., Müh, J. P., & Andres, C. (1999). Association study of the NF1 gene and Autistic disorder. American Journal of Medical Genetics, 88, 729–732. Oneal, B. J., Reeb, R. N., Korte, J. R., & Butter, E. J. (2006). Assessment of home-based behaviour modifi- cation programs for autistic

R., & Butter, E. J. (2006). Assessment of home-based behaviour modifi- cation programs for autistic children: Reliability and validity of the behavioural summarized evaluation. Journal of Prevention & Intervention in the Commu- nity, 32(1–2), 25–39. Reeb, R. N., Folger, S. F., & Oneal, B. J. (2009). Behavioural summarized evaluation: An assessment tool to enhance multidisciplinary and parent- professional collaborations in assessing symptoms of Autism. Children’s Health Care, 38, 301–320. Roux,

collaborations in assessing symptoms of Autism. Children’s Health Care, 38, 301–320. Roux, S., Adrien, J. L., Bruneau, N., Garreau, B., Coutu- rier, G., Gomot, M., et al. (1997). Classification of autistic syndrome using behavioural and electrophysi- ological assessments. Developmental Brain Dysfunc- tion, 10, 28–39.  ## Behavior Therapy Michael D. Powers The Center for Children With Special Needs, Glastonbury, CT, USA  ### Definition Behavior therapy (a term used here interchange- ably with

Glastonbury, CT, USA  ### Definition Behavior therapy (a term used here interchange- ably with behavior modification) is the applica- tion of techniques based on empirically derived principles of learning theory to the treatment of human problems, with the goal of reducing or eliminating unwanted behavior and replacing it with behavior that is more adaptive and socially appropriate. While individual strands of behavior therapy differ in several important ways, all share an emphasis on treating

strands of behavior therapy differ in several important ways, all share an emphasis on treating behavioral symptoms, with little or no reliance or attention to underlying unconscious processes. With respect to cogni- tions, behavior therapy proposes that by changing overt behavior (through reinforcement, extinc- tion, punishment, etc.), more adaptive emotional and affective thinking will follow. The under- standing of the “here-and-now” in context, rather than underlying conflicts in a person’s

The under- standing of the “here-and-now” in context, rather than underlying conflicts in a person’s past, is a key distinction between behavior therapy and other more psychodynamic or psychoanalytic therapies.  ### Historical Background Behavior therapy has evolved over the past six decades from many schools of thought and philosophical systems. This diversity is most evident in the fact that despite the predomi- nance of the discipline of psychology among practitioners of behavior therapy,

despite the predomi- nance of the discipline of psychology among practitioners of behavior therapy, some of the earliest pioneers were from other fields, for example, the Russian physiologist Ivan Pavlov and the South African psychiatrist Joseph Wolpe. Equally important is the observation that what we today consider behavior therapy generated from the confluence of the work of three groups in different countries. In the United States, the work of Skinner, Lindsley, and others on operant

in different countries. In the United States, the work of Skinner, Lindsley, and others on operant conditioning adopted a more functional approach to assessment and treat- ment and led to an emphasis on the experimental analysis of behavior best represented in the field of applied behavior analysis. British psychologist Hans Eysenck and his colleagues at the Maudsley Hospital in London emphasized that behavior problems were the result of complex interactions between the client’s personality

that behavior problems were the result of complex interactions between the client’s personality features, the behavior itself, and the environment. Their work targeted these interrelationships through the use of tech- niques of behavior change based on S-R learn- ing theory (classical conditioning) as an alternative to the then-prevalent psychoanalytic models. In South Africa, Joseph Wolpe, Arnold Lazarus, and others were at work developing techniques that used behavioral principles to treat

Lazarus, and others were at work developing techniques that used behavioral principles to treat more common psychological problems, leading to the development of systematic desen- sitization and psychotherapy by reciprocal inhi- bition. At the time, these evidence-based procedures were considered both revolutionary and evolutionary and set the stage for the continuing development of behavior therapy as a scientific discipline with people with a wide range of psychological problems.  ### Current

as a scientific discipline with people with a wide range of psychological problems.  ### Current Knowledge Contemporary behavior therapy may arbitrarily but conveniently be classified under five broad strands: applied behavior analysis, neo- behavioristic mediational S-R models, social learning approaches, cognitive therapy and cog- nitive behavior therapy, and “third-generation” approaches. By far, the most widely practiced with respect to understanding and treating autism are those based on

far, the most widely practiced with respect to understanding and treating autism are those based on applied behavior analysis (ABA). Here, the extension of the work of Skinner and his early colleagues to Donald Baer, Sidney Bijou, Fred Keller, Brian Iwata, and many others has generated a powerful evidence-based technol- ogy of change designed to address significant deficiencies in learning as well as behavioral excesses and deficits exhibited by those with ASD. The cornerstone of ABA is

as well as behavioral excesses and deficits exhibited by those with ASD. The cornerstone of ABA is function-based assessment and treatment, with data-based decision-making utilizing a variety of methods. Treatment procedures are designed to modify the relationships between antecedent and consequent stimuli that exert influence or control on overt behavior. There is a clear emphasis on what can be observed and measured; cognitive processes and other private events are typically regarded as beyond

and measured; cognitive processes and other private events are typically regarded as beyond the domain of scientific analysis. Because ABA directs itself toward the intensive study of the individual, a wide array of intervention and evaluation strategies have been developed and validated scientifically (see Cooper et al. 2020, for a comprehensive review).  Neobehavioristic mediational S-R models derive from classical conditioning and are most frequently associated with the work of Pavlov, Hull,

from classical conditioning and are most frequently associated with the work of Pavlov, Hull, Mowrer, and Miller. In these therapeutic models, hypothetical constructs (e.g., anxiety) are considered to be mediated by cognitive pro- cesses, and treatment techniques are designed to put those processes on extinction, resulting in behavior change. Systematic desensitization is a procedure most commonly associated with this strand of behavior therapy and is used to effec- tively treat phobias, fears,

associated with this strand of behavior therapy and is used to effec- tively treat phobias, fears, and other behavioral responses that are triggered by heightened arousal.  Social learning approaches are based on the work of Albert Bandura and his colleagues. These approaches, like other behavior therapies, postulate that behavior is controlled by external reinforcement, external stimulus events, and cog- nitive mediational processes. Importantly, the cognitive mediational processes determine

and cog- nitive mediational processes. Importantly, the cognitive mediational processes determine which environmental influences are more or less valued and receive more or less attention. Because the emphasis in social learning theory is on the indi- vidual as the agent of change, self-control, self- management, and self-instruction are prominent parts of the treatment plan. Within this paradigm, operant conditioning and especially modeling are more prominent than classical conditioning,

operant conditioning and especially modeling are more prominent than classical conditioning, although all are considered.  Cognitive behavior therapy (CBT) and cogni- tive therapy have become among the most prom- inent and visible of behavior therapy strands, along with applied behavior analysis, over the past 25 years. These approaches are based on the early work of Arnold Lazarus (multimodal ther- apy), Albert Ellis (rational emotive therapy), and Aaron Beck (cognitive therapy for

ther- apy), Albert Ellis (rational emotive therapy), and Aaron Beck (cognitive therapy for depression). All share certain core features with contemporary cognitive models, including the understanding that in order to change behavioral responses, one must also alter the prominence or value of the cognitions or thoughts that accompany the response. CBT seeks to develop retrievable mem- ories of more adaptive responses that will then compete with and replace learned problematic responses by

of more adaptive responses that will then compete with and replace learned problematic responses by suppressing the memory of those responses (Wood et al. 2011). This is achieved through a talk-based therapy process whereby psychoeducation, teaching coping skills, and in vivo exposure are combined to produce specific skills for change, alternative and more adaptive cognitions regarding change, and actual situations in which to practice change. CBT fosters change in behavior by identifying and

actual situations in which to practice change. CBT fosters change in behavior by identifying and challenging irrational beliefs and misinterpretation of events that cause distress (and maladaptive behavioral responses). CBT has been used with individuals with ASD exhibiting anxiety disorders (Chalfant et al. 2007; Sofronoff et al. 2005), anger manage- ment problems (Sofronoff et al. 2007), and dis- ruptive behavior (Solomon et al. 2008; Wymbs et al. 2005) as well as for treatment of core social

ruptive behavior (Solomon et al. 2008; Wymbs et al. 2005) as well as for treatment of core social symptoms of ASD (Wood et al. 2009).  The final strand is both a combination of evidence-based treatments and a reaction to ear- lier iterations of cognitive behavioral models. These so-called third-generation approaches incorporate a broad array of specific procedures, including dialectical behavior therapy (Linehan 1993), functional analytic psychotherapy (Kohlenberg and Tsai 1991), and acceptance

(Linehan 1993), functional analytic psychotherapy (Kohlenberg and Tsai 1991), and acceptance and commitment therapy (Hayes et al. 2012). All share the distinction of a general move away from a more cognitive approach and toward a more functional analytic model of assessment and treatment. In many ways, this return to the basics of behavior therapy is consistent with the core features described by Kazdin (1978), namely, that behavior therapists share a common set of assumptions including a focus

Kazdin (1978), namely, that behavior therapists share a common set of assumptions including a focus on current rather than historical determinants of behavior, an emphasis on overt behavior change as the main criterion by which treatment is to be evalu- ated, specification of dependent variables and treatment parameters in objective terms so that replication is possible, an emphasis on the bilat- eral relationship between behavior and the envi- ronment, a reliance on basic research methods in

eral relationship between behavior and the envi- ronment, a reliance on basic research methods in psychology as a source of hypotheses about treat- ment and specific therapeutic techniques, and specificity in definition, treatment, and measur- ing target populations.  ### See Also *   ▶Applied Behavior Analysis (ABA) *   ▶Behavioral Assessment *   ▶Behaviorism *   ▶Cognitive Behavioral Therapy (CBT)  Chalfant, A. M., Rapee, R., & Carroll, L. (2007). Treating anxiety disorders in children with high

Chalfant, A. M., Rapee, R., & Carroll, L. (2007). Treating anxiety disorders in children with high functioning autism spectrum disorders: A controlled trial. Journal of Autism and Developmental Disorders, 37, 1842–1857. Cooper, J. O., Heron, T. E., & Heward, W. L. (2020). Applied behavior analysis (2nd ed.). Hoboken: Pearson. Hayes, S. C., Strosahl, K. D., & Wilson, K. G. (2012). Acceptance and commitment therapy: The process and practice of mindful change (2nd ed.). New York: Guilford.

and commitment therapy: The process and practice of mindful change (2nd ed.). New York: Guilford. Kazdin, A. E. (1978). Behavior therapy: Evolution and expansion. The Counseling Psychologist, 23, 34–37. Kohlenberg, R. J., & Tsai, M. (1991). Functional analytic psychotherapy. New York: Plenum. Linehan, M. M. (1993). Cognitive behavior therapy of borderline personality disorder. New York: Guilford. Sofronoff, K., Attwood, T., & Hinton, S. (2005). A randomized controlled trial of CBT intervention

Sofronoff, K., Attwood, T., & Hinton, S. (2005). A randomized controlled trial of CBT intervention for anxiety in children with Asperger syndrome. Journal of Child Psychology and Psychiatry, 46, 1152–1160. Sofronoff, K., Attwood, T., Hinton, S., & Levin, I. (2007). A randomized controlled trial of a cognitive behavioral intervention for anger management in children diag- nosed with Asperger syndrome. Journal of Autism and Developmental Disorders, 37, 1203–1214. Solomon, M., Ono, M., Timmer, S.,

Journal of Autism and Developmental Disorders, 37, 1203–1214. Solomon, M., Ono, M., Timmer, S., & Goodlin-Jones, B. (2008). The effectiveness of parent child interaction therapy for families of children on the spectrum. Journal of Autism and Developmental Disorders, 38, 1767–1776. Wood, J. J., Drahota, A., Sze, K., Van Dyke, M., Decker, K., et al. (2009). Brief report: Effects of cognitive behavioral therapy on parent-reported autism symptoms in school-age children with high- functioning

behavioral therapy on parent-reported autism symptoms in school-age children with high- functioning autism. Journal of Autism and Develop- mental Disorders, 39, 1609–1612. Wood, J. J., Fujii, C., & Renno, P. (2011). Cognitive behavioral therapy in high-functioning autism: Review and recommendations for treatment development. In B. Reichow, P. Doehring, D. V. Cicchetti, & F. R. Volkmar (Eds.), Evidence-based practices and treatments for children with autism (pp. 197–230). New York: Springer.

Evidence-based practices and treatments for children with autism (pp. 197–230). New York: Springer. Wymbs, B. T., Robb, J. A., Chronis, A. M., Massetti, G. M., Fabiano, G. A., et al. (2005). Long-term multimodal treatment of a child with asperger’s syndrome and comorbid disruptive behavior problems: A case illustra- tion. Cognitive and Behavioral Practice, 12, 338–350.  ## Behavioral Approaches *   ▶Didactic Approaches  ## Behavioral Artistry: The Relationship Between Interpersonal Skills and

*   ▶Didactic Approaches  ## Behavioral Artistry: The Relationship Between Interpersonal Skills and Effective Treatment Repertoires of Applied Behavior Analysis Practitioners Kevin Callahan1 and Richard M. Foxx2 1University of North Texas, Kristin Farmer Autism Center, Denton, TX, USA 2University of Pennsylvania, Harrisburg, PA, USA  ### Definition Behavioral Artistry is a repertoire of humanistic, interpersonal behaviors associated with the effective delivery of applied behavior analysis

interpersonal behaviors associated with the effective delivery of applied behavior analysis treatment in autism.  ### Historical Background In a discussion summarizing 25 years of lessons learned in the development and application of applied behavior analysis practices, Richard Foxx (1998) highlighted a concept from an earlier paper (Foxx 1985) wherein he concluded that the effectiveness of ABA may be negatively impacted by a broad array of deficits in the behavioral repertoires of

of ABA may be negatively impacted by a broad array of deficits in the behavioral repertoires of practitioners. Foxx asserted that there can be important differences in the outcomes achieved by interventionists delivering ABA ser- vices in a strictly traditional way (referred to by Foxx as “behavioral technologists”) and those who demonstrate important humanistic, interper- sonal behaviors. He observed that some thera- pists, including individuals with little or no formal behavior analytic

observed that some thera- pists, including individuals with little or no formal behavior analytic training, appear qualita- tively better at changing behaviors than their peers with equivalent or even greater levels of training. Foxx described these therapists as “Behavioral Artists” (Foxx 1998, p. 14). Behavioral technolo- gists, according to Foxx, often appear to be prac- titioners who simply learn a set of scripted, manualized strategies, methods, and procedures and deliver them without much

a set of scripted, manualized strategies, methods, and procedures and deliver them without much focus on the over- all quality of the therapeutic interaction. In con- trast to technologists, Behavioral Artists are described as “natural behavior analysts” who demonstrate a set of seven interpersonal charac- teristics, as well as effective communication skills (Foxx 1998, p. 14).  Foxx hypothesized that there are foundational therapeutic relationship skills associated with the demonstration of

that there are foundational therapeutic relationship skills associated with the demonstration of “Behavioral Artistry” (BA), including: *   Likes people: Is able to establish rapport; dem- onstrates concern; wants to facilitate positive change *   Has “perceptive sensitivity”: Pays careful attention to important indicators of client behavior that may be small, subtle, and gradual *   Doesn’t like to fail: Sees difficult clients as a personal challenge to overcome and as an opportunity for the

to fail: Sees difficult clients as a personal challenge to overcome and as an opportunity for the client to succeed *   Has a sense of humor: Recognizes and accepts that much in the educational and human ser- vices professions is bizarre, illogical, and humorous *   Looks “for the pony”: Is optimistic and sees behavior change in a “glass half-full” context; always believes programming will be success- ful; is less likely to burn out *   Is thick-skinned: Doesn’t take negative client actions

success- ful; is less likely to burn out *   Is thick-skinned: Doesn’t take negative client actions toward herself or himself personally; maintains objectivity and positivity *   Is “self-actualized”: Does whatever is neces- sary and appropriate to facilitate and produce positive behavior change; is not under audi- ence control; is creative (Foxx 1985, 1998)  Several of Foxx’s BA components are similar to therapist skills in clinical psychology and counseling and have long been associated with

to therapist skills in clinical psychology and counseling and have long been associated with psychodynamic and humanistic/experiential approaches to behavior change. For example, the concept of therapeutic alliance (TA) refers to the collaborative, caring partnership that characterizes a positive client-therapist relation- ship (Lejuez et al. 2006). TA is seen as a funda- mental component of effectiveness within other therapeutic approaches and has been dem- onstrated to be a significant

of effectiveness within other therapeutic approaches and has been dem- onstrated to be a significant predictor of treatment success (Holmqvist 2013; Horvath et al. 2011). Kerns et al. (2018) concluded that a strong therapeutic alliance was related to more positive treatment outcomes in high-functioning children with autism. Similarly, the related concepts of “empathic teaching” in special education (Morgan 1991) and “rapport building” (Shireman et al. 2016) and “compassionate care” (Taylor et

(Morgan 1991) and “rapport building” (Shireman et al. 2016) and “compassionate care” (Taylor et al. 2018) in behavior analytic treatment have been highlighted in efficacy literature as essential repertoires among service providers for individuals with disabilities. The influence of empathy, in particular, has been frequently reported within medical and clinical care studies to be a key determinant of positive patient-client relationships and outcomes (e.g., Riess et al. 2012). Nevertheless, the

of positive patient-client relationships and outcomes (e.g., Riess et al. 2012). Nevertheless, the roles and possible signif- icance of these kinds of therapist behaviors in ABA have not been fully explored.  In 2016 Leaf et al. published a review of the skills needed for ABA practitioners to conduct effective programming for individuals with ASD. The authors identified intervention components related to what they describe as a “progressive” and “responsive” approach to the delivery of ABA

related to what they describe as a “progressive” and “responsive” approach to the delivery of ABA services. These skills highlight interventionists’ abilities to be flexible and analytical in the imple- mentation of individualized protocols and prac- tices (e.g., while using established EBPs such as discrete trial training and functional analysis) rather than strictly adhering to today’s frequently observed “recipe-based” ABA approach (Leaf et al. 2016, p. 721). Echoing some of the conclu- sions

observed “recipe-based” ABA approach (Leaf et al. 2016, p. 721). Echoing some of the conclu- sions of Foxx’s research, Leaf and colleagues suggested that the pervasive use of ABA in autism treatment has resulted in changes in its scope and focus, and behavioral interventions have become potentially less effective: A danger inherent in any large scale, quickly grow- ing area is a loss of focus on meaningful purpose, process, and outcomes. In the field of ABA, this might translate into dogmatic

meaningful purpose, process, and outcomes. In the field of ABA, this might translate into dogmatic lack of attention to clinical significance, selection of impractical pro- cedures, ritualistic data-collection, over-abundant use of off-putting, dehumanizing terminology, disregard of logistical realities, and insensitivity to consumer issues. (Leaf et al. 2016, p. 728)  Eikeseth (2010) also investigated specific knowledge and skill components necessary to become a technically “competent” provider

specific knowledge and skill components necessary to become a technically “competent” provider of early intensive behavioral interventions (EIBI) for children with autism, providing recommenda- tions for assessing and training interventionist skills in the areas of basic intervention, compre- hensive curriculum programming, working with families, and supervision. Eikeseth concluded that ineffective EIBI programming is related, in part, to deficiencies in meeting standards of overall program

EIBI programming is related, in part, to deficiencies in meeting standards of overall program quality: “Highly intensive teaching and supervision will not produce optimal gains if teachers and/or supervisors do not have the nec- essary qualifications” (Eikeseth 2010, p. 243).  To a large extent, Foxx and other researchers have called attention to the critical need to assess the essential technical skills and related interper- sonal characteristics of the individuals delivering ABA services, in

skills and related interper- sonal characteristics of the individuals delivering ABA services, in order to ensure the future appli- cation of ABA as a highly effective and viable treatment approach for persons with ASD. It is possible that the repertoires associated with BA can contribute to sustained improvements in the effective delivery of ABA for individuals with autism and other disabilities.  ### Current Knowledge Callahan and colleagues (Callahan et al. 2019) conducted a study to

### Current Knowledge Callahan and colleagues (Callahan et al. 2019) conducted a study to determine if the concept of Behavioral Artistry could be validated and reliably measured using standardized assessments and to determine whether individuals studying and/or working in the field of applied behavior analysis differ from those in other human services professions on important interpersonal skills potentially related to therapeutic effectiveness in autism treatment. In addition, because of the

potentially related to therapeutic effectiveness in autism treatment. In addition, because of the importance of social validity in the selection and effective use of evidence-based treatments in autism (Callahan et al. 2008), these researchers investigated the social validity of characteristics associated with the concept of Behavioral Artistry among the parents of children with ASD. Importantly, Callahan et al. (2019) also assessed preliminary data to determine if there are differences in the

Callahan et al. (2019) also assessed preliminary data to determine if there are differences in the quality of ABA treatment delivered by autism interventionists who have high or low levels of Behavioral Artistry characteristics.  Callahan et al. (2019) determined that the Sixteen Personality Factor Fifth Edition Question- naire (16PF) instrument could reliably measure Behavioral Artistry characteristics. The 16PF was developed by Raymond B. Cattell in 1949 and is currently in its fifth revision

The 16PF was developed by Raymond B. Cattell in 1949 and is currently in its fifth revision as a widely researched and used, comprehensive, self-report measure of normal adult personality (Institute for Personality and Ability Testing [IPAT] 2009). Designed for individuals aged 16 years and older, the 16PF has been implemented in a variety of research and applied settings (including clini- cal, counseling, and educational contexts) and has been used to determine and predict levels of creativity,

and educational contexts) and has been used to determine and predict levels of creativity, leadership, interpersonal skills, and occupational profiles. The validity and reliability of the 16PF instrument have been well established in more than 4,000 research publications during the past 60 plus years (IPAT 2009). The fifth edition of the 16PF contains 185 multiple-choice items asking simple questions about the respon- dent’s daily behavior, interests, and opinions. Examples of questions include:

about the respon- dent’s daily behavior, interests, and opinions. Examples of questions include: “I’d enjoy more being a counselor than an architect (true; false),” and “I believe more in ___ (being properly serious in everyday life; the saying ‘laugh and be merry’ most of the time).” Each question has two narra- tive choices (“a” or “c”) as well as a “b” choice indicated by a question mark (“?”). Respondents are encouraged to choose the “b” (“?”) response only when neither of the other choices

Respondents are encouraged to choose the “b” (“?”) response only when neither of the other choices was a better descriptor and are informed that there are no “right” or “wrong” answers.  Responses of the 16PF result in scores on 16 primary personality factors along a bipolar continuum (i.e., each personality factor is represented by two discrete poles, each having a unique, meaningful definition representing a different behavioral profile). For example, on the 16PF personality factor of “Warmth,”

a different behavioral profile). For example, on the 16PF personality factor of “Warmth,” respon- dents could score as being closer to the pole “Reserved, impersonal, distant” or the pole “Warm, outgoing, attentive to others” (IPAT 2009, p. 24).  Using a combination of factor examination, model comparison, and model modification tech- niques, Callahan et al. determined that eight of the 16PF personality factors are clearly supportive of the BA concept (the factor of “Reasoning,” con- sidered by

factors are clearly supportive of the BA concept (the factor of “Reasoning,” con- sidered by the test designers to be a brief indicator of intelligence, was omitted from consideration as being largely unrelated to effective ABA interven- tion). As a result of this statistical modeling, a behavioral artist was hypothesized to represent interpersonal and therapeutic behaviors associ- ated with warmth, emotional stability, liveliness, social boldness, self-assurance, openness to change,

with warmth, emotional stability, liveliness, social boldness, self-assurance, openness to change, self-reliance, and perfectionism.  In order to determine if there was a difference in the level of BA characteristics among univer- sity students majoring in ABA and other major areas of study, Callahan et al. conducted an online survey using the 16PF. Undergraduate and grad- uate students in the majors of ABA, special edu- cation, rehabilitation counseling, and other human services majors

the majors of ABA, special edu- cation, rehabilitation counseling, and other human services majors completed the survey. “Other human services” majors included students in speech and hearing sciences, clinical counseling, psychology, child development, occupational therapy, adapted physical education, and similar majors. Additionally, engineering and computer science students served as a comparison group of persons not expected to pursue professional careers working in human services with

group of persons not expected to pursue professional careers working in human services with individ- uals with autism or intellectual disabilities.  The 16PF survey results for each respondent were analyzed. For each personality factor, the respondent’s scores indicated whether he or she fell into the BA-compatible pole or the non- BA-compatible pole category. Overall percent- ages of BA-compatible characteristics were then computed for each respondent. Mean percentages were computed for three

characteristics were then computed for each respondent. Mean percentages were computed for three main survey respondent groups: (1) Autism Center Group (respondents who were employed part-time or full-time at a university-based autism center delivering ABA therapy); (2) External Group (student respondents not working at the autism center; and (3) Com- bined Group (all respondents, including under- graduate and graduate students working at the autism center and students external to the autism

graduate and graduate students working at the autism center and students external to the autism center).  Finally, Callahan et al. conducted observa- tions of ABA therapists to determine if those with the highest and lowest percentages of BA characteristics looked qualitatively different in their delivery of ABA therapy. The research team posited that therapist behaviors associated with the Foxx BA characteristics “Likes People,” “Thick-Skinned,” “Perceptive Sensitivity,” and “Sense of Humor”

BA characteristics “Likes People,” “Thick-Skinned,” “Perceptive Sensitivity,” and “Sense of Humor” could be observed during the delivery of typical discrete trial training (DTT) and naturalistic environment teaching (NET) programming. Operational definitions for each of these BA characteristics were developed. However, during field testing it became apparent that only behaviors associated with “Likes Peo- ple” occurred frequently enough during therapy sessions to measure meaningfully as a compo-

Peo- ple” occurred frequently enough during therapy sessions to measure meaningfully as a compo- nent of BA. It was further observed that behav- iors associated with the Foxx characteristics of Thick-Skinned and Sense of Humor were subsumed within the definition of “Likes People.”  “Likes People” was generally defined as observable demonstrations of enjoyment and concern directed toward a client, with four asso- ciated behavioral indicators: (a) pleasant facial expression; (b) positive tone of

with four asso- ciated behavioral indicators: (a) pleasant facial expression; (b) positive tone of voice; (c) sustained gaze at the client; and (d) body proximity and orientation toward the client. “Likes People” could only be scored during times the therapist was engaged in social interac- tions with clear communicative and therapeutic intent. The occurrence or nonoccurrence of the four indicators of “Likes People” was scored by data collectors using a partial interval data sheet, on which a

of “Likes People” was scored by data collectors using a partial interval data sheet, on which a 10-minute observation period was divided into 10-second scoring intervals. If the behavioral indicator was observed at any time during an interval, data collectors marked a “+” on the data sheet. A total percentage of occur- rence was computed for each of the four behav- ioral indicators for each observation session. Data collectors were required to demonstrate mastery of the scoring system before

session. Data collectors were required to demonstrate mastery of the scoring system before beginning BA scoring.  In addition to partial interval scoring of the behavioral indicators of “Likes People,” data col- lectors recorded a subjective rating of the therapist’s behavior throughout the entire 10-minute therapy session, based on a standard- ized description of typical examples of the target behavior, as follows: “Likes People will typically appear as a person who is fun, friendly, and

behavior, as follows: “Likes People will typically appear as a person who is fun, friendly, and child- like; energetic, positive, and affectively expres- sive; uses appropriate physical touch and gestures; appears attentively interested in what the client is doing; is engaged in activities that demonstrate care for the client’s welfare and hap- piness; demonstrates empathy, respect, and polite- ness.” At the conclusion of a scoring session, data collectors subjectively rated the therapist’s

ness.” At the conclusion of a scoring session, data collectors subjectively rated the therapist’s “Likes People” behaviors. Behavioral technologist behaviors related to the fidelity of implementation of ABA were also assessed.  The results of the Callahan et al. (2019) study indicate that students majoring in ABA had the lowest overall levels of BA characteristics across all human services majors. Notably, the personal- ity factors of “warmth” and “perfectionism” were significantly lower among

Notably, the personal- ity factors of “warmth” and “perfectionism” were significantly lower among ABA majors. Parents of children with autism rated descriptors of BA behaviors as significantly more preferable than non-BA behaviors for the therapists working with their children, providing an indicator of social validation for the concept of Behavioral Artistry by this important consumer group of autism treatments. Importantly, therapists with higher percentages of BA characteristics were rated as

treatments. Importantly, therapists with higher percentages of BA characteristics were rated as delivering higher-quality ABA, including both BA (“Likes People”) and behavioral technol- ogist therapeutic behaviors.  ### Future Directions Callahan et al. (2019) concluded that the effective practice of ABA for individuals with ASD can be broadened and improved by incorporating BA repertoires into the ongoing delivery of treatment. While acknowledging the preliminary nature and limitations of

the ongoing delivery of treatment. While acknowledging the preliminary nature and limitations of their research, they identified several key directions for future research. Addressing each of the four questions below will be of paramount importance in further validating the potential impact of BA on the fields of ABA and autism treatment.  1.  What are the relationships between the tech- nology and artistry of ABA treatment in autism? For the past several decades, the literature on ABA

nology and artistry of ABA treatment in autism? For the past several decades, the literature on ABA programming for children with autism has focused almost exclusively on improving the technology of treatment. Researchers and practitioners have done an exemplary job identifying evidence-based practices (EBPs) and developing curricula to increase effective autism programming. Indeed, Foxx’s seminal articles which intro- duced the concept of Behavioral Artistry (Foxx 1985, 1998) also included

articles which intro- duced the concept of Behavioral Artistry (Foxx 1985, 1998) also included robust emphases on the necessary technological knowledge and skills therapists must possess in order to be effective providers of ABA treat- ments. In the Callahan et al. (2019) study, therapists with both the highest and lowest levels of Behavioral Artistry demonstrated relatively similar levels of technical compe- tence. However, it can be argued that the repertoires of behavioral tech- nologists,

compe- tence. However, it can be argued that the repertoires of behavioral tech- nologists, although necessary, are not sufficient to continue to advance the development of the fields of behavior analysis and autism treat- ment in order to attain maximum, broad- reaching clinical and educational impacts. Researchers must continue to examine the qualities and corresponding behaviors of exemplary behavior analysts, including identi- fying how components of humanistic thera- peutic care may be

behavior analysts, including identi- fying how components of humanistic thera- peutic care may be integrated within the delivery of high-quality ABA treatment. As Taylor et al. (2018) point out, the empiri- cally derived technical skills of behavior ana- lysts will always remain a critically important component of client outcomes. Nevertheless, “those methods do not exist separately from relationships with clients and their caregivers” (Taylor et al. 2018, p. 1). Future research should

relationships with clients and their caregivers” (Taylor et al. 2018, p. 1). Future research should investigate these relationships, and the potential synergies that could result from max- imizing technical competence in coordination with Behavioral Artistry repertoires. Such research could prove to be a valuable addition to the literature on the relationship between therapist interpersonal skills and effective practice (e.g., Anderson et al. 2009; Keijsers et al. 2000; Lambert and Barley

skills and effective practice (e.g., Anderson et al. 2009; Keijsers et al. 2000; Lambert and Barley 2001). 2.  Can the repertoires of Behavioral Artistry be effectively trained? Another important focus for future research is to determine if autism practitioners with lower levels of BA can be taught to consistently demonstrate associated behaviors at a higher level. In addition to recent efforts within the field of ABA (e.g., Lugo et al. 2017; Shireman et al. 2016), other helping professions,

within the field of ABA (e.g., Lugo et al. 2017; Shireman et al. 2016), other helping professions, such as counseling, have also concluded that the basic skills of establishing therapeutic rapport are, indeed, trainable (Carkhuff 2009; Lambert and Barley 2001). It is possible that by using ABA-based training methods such as Behavioral Skills Training (e.g., Parsons et al. 2012), novice therapists can be taught to recognize skill def- icits and receive effective training to remedi- ate them.

can be taught to recognize skill def- icits and receive effective training to remedi- ate them. Crucial additional questions will include how much improvement can be achieved and whether or not the observed changes are clinically significant and appear genuine. 3.  Do the behavioral repertoires associated with Behavioral Artistry improve student/cli- ent outcomes? It is important for researchers to demonstrate that the implementation of BA skills results in greater school and life out- comes.

to demonstrate that the implementation of BA skills results in greater school and life out- comes. Hypothetically and logically, ABA therapists who are warm, attentive, creative, optimistic, and persevering should engage clients instructionally at higher levels and minimize escape-avoidance and problem behaviors, allowing for the more effective delivery of their corresponding technologist repertoires. Nevertheless, future research should examine the interpersonal characteris- tics and behaviors

Nevertheless, future research should examine the interpersonal characteris- tics and behaviors of ABA practitioners with the intention of identifying more precisely the repertoires and behaviors associated with the most positive client outcomes. The social validation of these outcomes is vitally impor- tant, especially for a field which continues to be subject to negative public perceptions and misperceptions, and less than universal acceptability of its methods and language (Critchfield and Reed

and less than universal acceptability of its methods and language (Critchfield and Reed 2017; Woolfolk et al. 1977). The parent survey results reported by Callahan et al. (2019) suggest that at least this important consumer group supports the inclu- sion of the interpersonal aspects of Behavioral Artistry as a future hallmark of ABA therapy in autism intervention. 4.  What can the fields of ABA and autism inter- vention and education do to identify, recruit, and retain practitioners with positive

autism inter- vention and education do to identify, recruit, and retain practitioners with positive interper- sonal behaviors? Expanding the definition of effective ABA practitioners to include the characteristics of Behavioral Artistry can potentially improve the delivery, outcomes, and acceptability of ABA treatment for indi- viduals with ASD. The preliminary results of Callahan et al. (2019) suggest that persons with the highest levels of Behavioral Artistry may often seek other human

suggest that persons with the highest levels of Behavioral Artistry may often seek other human services profes- sions than ABA in which to apply their thera- peutic skills. It is unclear why the students in that study majoring in ABA had the lowest levels of Behavioral Artistry, and, more concerning, the lowest levels of warmth, across all groups of human services providers. However, this is a compelling finding. It could be beneficial for the field of ABA to conduct a large-scale self-study

a compelling finding. It could be beneficial for the field of ABA to conduct a large-scale self-study effort to investigate this phenomenon.  ### See Also *   ▶Applied Behavior Analysis (ABA) *   ▶Empathy *   ▶Interpersonal Skills *   ▶Social Validity  Anderson, T., Ogles, B. M., Patterson, C. L., Lambert, M. J., & Vermeersch, D. A. (2009). Therapist effects: Facilitative interpersonal skills as a predictor of therapist success. Journal of Clinical Psychology, 65, 755–768. Callahan, K., Henson,

predictor of therapist success. Journal of Clinical Psychology, 65, 755–768. Callahan, K., Henson, R., & Cowan, A. (2008). Social validation of evidence-based practices in autism by parents, teachers, and administrators. Journal of Autism and Developmental Disorders, 38, 678–692. Callahan, K., Foxx, R. M., Swierczynski, A., Aerts, X., Mehta, S., McComb, M., Nichols, S. M., Segal, G., Donald, A., & Sharma, R. (2019). Behavioral Artistry: Examining the relationship between the interpersonal

A., & Sharma, R. (2019). Behavioral Artistry: Examining the relationship between the interpersonal skills and effective practice repertoires of applied behavior analysis practitioners. Journal of Autism and Developmental Disorders, 49, 3557–3570. https://doi. org/10.1007/s10803-019-04082-1. Carkhuff, R. R. (2009). The art of healing (9th ed.). Amherst: Possibilities Publishing. Critchfield, T. S., & Reed, D. D. (2017). The fuzzy concept of applied behavior analysis research. The Behavior

T. S., & Reed, D. D. (2017). The fuzzy concept of applied behavior analysis research. The Behavior Analyst, 40, 123–159. Eikeseth, S. (2010). Examination of qualifications required of an EIBI professional. European Journal of Behavior Analysis, 11, 239–246. Foxx, R. M. (1985). The Jack Tizzard memorial lecture: Decreasing behaviours: Clinical, ethical, and environ- mental issues. Australia and New Zealand Journal of Developmental Disabilities, 10, 189–199. Foxx, R. M. (1998). Twenty-five years of

Zealand Journal of Developmental Disabilities, 10, 189–199. Foxx, R. M. (1998). Twenty-five years of applied behavior analysis: Lessons learned. Discriminanten, 4, 13–31. Foxx, R. M. (2008). Applied behavior analysis (ABA) treatment of autism: The state of the art. Child and Adolescent Psychiatric Clinics of North America, 17, 821–834. https://doi.org/10.1016/j.chc.2008.06.007. Holmqvist, R. (2013). Therapeutic alliance predicts symp- tomatic improvement session by session. Journal of Counseling

Therapeutic alliance predicts symp- tomatic improvement session by session. Journal of Counseling Psychology, 60, 317–328. Horvath, A. O., Del Re, A. C., Fluckiger, C., & Symonds, D. (2011). Alliance in individual psychother- apy. Psychotherapy, 48, 9–16. Institute for Personality and Ability Testing. (2009). 16PF fifth edition questionnaire manual. Champaign: Author. Keijsers, G. P. J., Schaap, C. P. D. R., & Hoogduin, C. A. L. (2000). The impact of interpersonal patient and therapist behavior

P. D. R., & Hoogduin, C. A. L. (2000). The impact of interpersonal patient and therapist behavior on outcome in cognitive- behavior therapy: A review of empirical studies. Behavior Modification, 24, 264–297. Kerns, C. M., Collier, A., Lewin, A. B., & Storch, E. A. (2018). Therapeutic alliance in youth with autism spectrum disorder receiving cognitive-behavioral treat- ment for anxiety. Autism, 22, 636–640. Lambert, M. J., & Barley, D. E. (2001). Research summary on the therapeutic relationship

636–640. Lambert, M. J., & Barley, D. E. (2001). Research summary on the therapeutic relationship and psychotherapy out- come. Psychotherapy, 38, 357–361. Leaf, J. B., Leaf, R., McEachin, J., Taubman, M., Rosales, S., Ross, R. K., . . . & Weiss, M. J. (2016). Applied behavior analysis is a science and, therefore, progressive. Journal of Autism and Developmental Disorders, 46, 720–731. Lejuez, C. W., Hopko, D. R., Levine, S., Gholkar, R., & Collins, L. M. (2006). The therapeutic alliance in

C. W., Hopko, D. R., Levine, S., Gholkar, R., & Collins, L. M. (2006). The therapeutic alliance in behavior therapy. Psychotherapy: Theory, Research, Practice, Training, 42, 456–468. https://doi.org/10. 1037/0033-3204.42.4.456. Lugo, A. M., King, M. L., Lamphere, J. C., & McArdle, P. E. (2017). Developing procedures to improve therapist-child rapport in early intervention. Behavior Analysis in Practice, 10, 395–401. https:// doi.org/10.1007/s40617-016-0165-5. Morgan, S. R. (1991). The

in Practice, 10, 395–401. https:// doi.org/10.1007/s40617-016-0165-5. Morgan, S. R. (1991). The fundamental element of the teaching process: Empathy. In S. R. Morgan & J. Reinhart (Eds.), Interventions for students with emo- tional disorders (pp. 31–49). Austin: Pro-Ed. Parsons, M. B., Rollyson, J. H., & Reid, D. H. (2012). Evidence-based staff training: A guide for practitioners. Behavior Analysis in Practice, 5, 2–11. Riess, H., Kelley, J. M., Bailey, R. W., Dunn, E. J., & Phillips, M.

Analysis in Practice, 5, 2–11. Riess, H., Kelley, J. M., Bailey, R. W., Dunn, E. J., & Phillips, M. (2012). Empathy training for resident physicians: A randomized controlled trial of a neuroscience-informed curriculum. Journal of General Internal Medicine, 27, 1280–1286. Shireman, M. L., Lerman, D. C., & Hillman, C. B. (2016). Teaching social play skills to adults and children with autism as an approach to building rapport. Journal of Applied Behavior Analysis, 49, 512–531. https://doi.

as an approach to building rapport. Journal of Applied Behavior Analysis, 49, 512–531. https://doi. org/10.1002/jaba.299. Taylor, B. A., LeBlanc, L. A., & Nosik, M. R. (2018). Compassionate care in behavior analytic treatment: Can outcomes be enhanced by attending to relation- ships with caregivers? Behavior Analysis in Practice. https://doi.org/10.1007/s40617-018-00289-3. Woolfolk, A. E., Woolfolk, R. L., & Wilson, G. T. (1977). A rose by any other name. . . : Labelling bias and attitudes

R. L., & Wilson, G. T. (1977). A rose by any other name. . . : Labelling bias and attitudes toward behavior modification. Journal of Consulting and Clinical Psychology, 45, 184.  ## Behavioral Assessment Michael D. Powers The Center for Children with Special Needs, Glastonbury, CT, USA  ### Definition Behavioral assessment is the process of objec- tively identifying and evaluating units of response (behaviors) and related controlling environmental and organismic variables so that specific behav-

(behaviors) and related controlling environmental and organismic variables so that specific behav- iors can be better understood and changed (Cooper et al. 2020; Nelson and Hayes 1979). It is pragmatic in nature, in that behavioral assess- ment seeks to determine and describe underlying functional relationships between behavior and the person in their environment and then uses that understanding to facilitate the development of new, more adaptive functional responses. By emphasizing objective

to facilitate the development of new, more adaptive functional responses. By emphasizing objective identification and mea- surement of environmental and organismic- dependent variables that may influence behavior, behavioral assessment ultimately serves treatment planning and outcome evaluation.  ### Historical Background Behavioral assessment has a long past but a relatively short history. With the advent of behavioral approaches to understanding and treating individuals with varying problems

the advent of behavioral approaches to understanding and treating individuals with varying problems (e.g., fears and phobias, depression, anxiety, self-injurious behavior) over the past 60 plus years, behavioral assessment had been some- what of an informal process until the 1970s when closer attention to those dependent vari- ables that contributed to behavioral treatment success or failure began to receive greater atten- tion from researchers and clinicians. As would be expected, there was an

to receive greater atten- tion from researchers and clinicians. As would be expected, there was an initial emphasis on what behavioral assessment was not and in spec- ifying differences between behavioral and so-called traditional or psychodynamic assess- ment. Those differences were succinctly summa- rized by Mash (1979), who noted that at a conceptual and applied level, behavioral assess- ment is characterized by the view that human behavior is predominantly under the control of environmental

characterized by the view that human behavior is predominantly under the control of environmental and organismic events, rather than underlying intrapsychic processes, intro- spection, or personality traits that are inferred. Further, behavior must be examined in context. While these were radical ideas at the time, par- ticularly as regards the treatment of mood, devel- opmental, and conduct disorders of adults and children, this approach was prescient. As the relationship between brain and

of adults and children, this approach was prescient. As the relationship between brain and behavior is better understood through sophisticated neuroimaging techniques and through advances in neurobiol- ogy, genetics, and neurochemistry, it becomes clear that context is everything. These variables, once broadly called organismic, now are more precisely described and differentiated. The result is that behavioral assessment procedures are now better able to help pinpoint functional relation- ships

behavioral assessment procedures are now better able to help pinpoint functional relation- ships so that treatment selection and efficacy improve, with greater generalizability beyond the treatment setting.  In practical terms, behavioral assessment evolved initially after behavioral treatments were devised, rather than before it. While this observa- tion helps to understand the recency of more sophisticated assessment strategies, it also provides a context for understanding why so many behav-

assessment strategies, it also provides a context for understanding why so many behav- ioral interventions for complex psychological dis- orders have become evidence-based treatments of choice over the past 40 years (e.g., cognitive behav- ior therapy for individuals with anxiety, depression, and anorexia and bulimia and dialectical behavior therapy for those with borderline personality disor- der). Behavioral assessment is rooted in the under- standing that behavior must be examined in

der). Behavioral assessment is rooted in the under- standing that behavior must be examined in context, with direct samples taken in multiple set- tings, utilizing multiple methods of inquiry. With these much more precise, operationalized, and objective formulations, the clinician is able to more accurately specify what is expected or pre- dicted to change and then to evaluate whether change, in fact, occurred after the introduction of treatment. It is this hypothesis-testing process that

in fact, occurred after the introduction of treatment. It is this hypothesis-testing process that compliments the rejection of inferred causation and makes the behavioral assessment process inher- ently objective, dynamic, and responsive to new evidence. Indeed, the reliance on the basics of the scientific method permits the needed flexibility to abandon or modify a treatment approach if it is not working as planned.  ### Current Knowledge The technology of behavioral assessment is ever-

is not working as planned.  ### Current Knowledge The technology of behavioral assessment is ever- expanding but is always directed toward under- standing behavior functionally (see ▶“Functional Analysis”) through the use of direct and indirect assessment methods. It is important to emphasize, however, that indirect assessment does not imply a reliance on inference. Rather, indirect behavioral assessment methods such as questionnaires (e.g., Questions About Behavioral Function; Paclawsky et al.

methods such as questionnaires (e.g., Questions About Behavioral Function; Paclawsky et al. 2001) and rating scales (Social Responsiveness Scale; Constantino and Gruber 2005) are used in conjunction with direct obser- vation methods to clarify points of behavioral convergence and are themselves designed to mea- sure behaviors that have been more precisely and operationally defined so that interobserver agree- ment is high.  Identification of target behavior is the first step in a comprehensive

agree- ment is high.  Identification of target behavior is the first step in a comprehensive behavioral assessment and requires that behavioral form and function be described, including function, topography, duration, frequency, and intensity of the behavior. This is done in such a way that the description becomes an operational definition, specifying explicit and precise response parameters. Once completed, determination of controlling variables is undertaken using indirect and direct methods.

completed, determination of controlling variables is undertaken using indirect and direct methods.  Indirect methods include third-party interviewing with a structured assessment format such as the functional assessment interview (O’Neill et al. 1990), review of incident reports or permanent products of the behavioral episode, or more infor- mal interviews with parents or caregivers. Direct assessment procedures include direct observation of the target behavior in the natural or analog

assessment procedures include direct observation of the target behavior in the natural or analog environment using any number of methods (e.g., momentary time sampling, partial interval record- ing) as well as descriptive analysis of the behavior using antecedent-behavior-consequence (ABC) analysis. In all cases, the behavioral assessor seeks to describe controlling variables of three types: antecedent stimuli, consequent stimuli, and organismic stimuli.  Antecedent stimuli can be

types: antecedent stimuli, consequent stimuli, and organismic stimuli.  Antecedent stimuli can be discriminative stimuli (they predict the expec- tation of a particular response because the person has learned that their response is followed by a specific consequence) or elicitors (which evoke automatic, physiological, or emotional responses). These immediate “triggers” help to understand the impact of a particular stimulus event on the person and their behavior.  An assessment of context is

of a particular stimulus event on the person and their behavior.  An assessment of context is undertaken in the form of analysis of setting events and establishing operations. Setting events are variables that influ- ence an ongoing relationship between a stimulus and a response, whereas establishing operations momentarily change the reinforcing value of a discriminative stimulus. There are technical dif- ferences between both terms, but both describe antecedent conditions that alter response

dif- ferences between both terms, but both describe antecedent conditions that alter response probability. For example, when ill or satiated on a specific reinforcing stimulus, a person might respond differently than when healthy or in a deprived state. These are assessed because these variables are more distant from the target behavior (may not occur immediately before the target behavior), but they may persist over time, or exert a cumulative effect, and influence the target behavior. Knowing

they may persist over time, or exert a cumulative effect, and influence the target behavior. Knowing them highlights a possible point of intervention.  Target behavior can be embedded in a behav- ioral chain, and assessment for this is important because it may provide an opportunity to intervene at an early point in the chain, thereby interrupting the variables that would normally control the response. Equally important is the assessment of high- and low-probability settings. That is, it is

response. Equally important is the assessment of high- and low-probability settings. That is, it is important to understand where and when the target behavior is more or less likely to occur as a method for considering stimulus control.  Behavioral assessment of consequences refers to those stimuli that reliably occur after the target behavior is emitted. These are critical to understand that they represent those contingencies maintaining (reinforcing) the behavior. For behavior change to

they represent those contingencies maintaining (reinforcing) the behavior. For behavior change to occur, those contingencies of reinforcement must be modified so that a problematic target behavior is no longer reinforced by the stimulus maintaining it, clearing the way for an alternative, more adaptive response to be reinforced and established to replace the problem behavior.  Organismic stimuli have received somewhat less attention from researchers over the years, but with the advent of more

have received somewhat less attention from researchers over the years, but with the advent of more sophisticated technol- ogies (e.g., with neuroimaging or for genetics), a greater emphasis is being placed on the relation- ship between physical, biological, and neurologi- cal status and behavioral expression. For example, identification of lesions in a specific area of the brain (as would occur with tuberous sclerosis) may help the clinician better understand the con- text for a challenging

with tuberous sclerosis) may help the clinician better understand the con- text for a challenging behavior. This would not necessarily reduce the importance of addressing the target behavior, but it would likely support an interdisciplinary approach to treatment.  Two final areas must be considered in behav- ioral assessment if the assessment results are to fully inform treatment planning. The first is an assessment of preferences and reinforcers, and the second is the identification of

The first is an assessment of preferences and reinforcers, and the second is the identification of functionally equivalent behavior(s) that can be taught as a replacement for the target behavior to be reduced or eliminated. There are a number of empirically based strategies for evaluating which stimuli are preferred by a client. They (or caregivers) can be queried, observed, or placed in a formal trial- based assessment environment. An example of the latter is a “forced choice” or paired stimulus

based assessment environment. An example of the latter is a “forced choice” or paired stimulus presentation whereby two items are presented to a client, all matched randomly. Preferences are determined by frequency of selection of specific items (see Fisher et al. 1992 for an example). In contrast to preferences, reinforcers can only be identified by a functional test. That is, when pre- sented, a stimulus is only considered a reinforcer if it increases the likelihood of reoccurrence of the

a stimulus is only considered a reinforcer if it increases the likelihood of reoccurrence of the behavior it followed. There are several ways to conduct a reinforce assessment including those based on concurrent, progressive ratio, or multiple schedules (see Cooper et al. 2020, for examples).  If behavior change is to be achieved, general- ized, and maintained, it must gain for the client the same functional outcome, but with greater ease and efficiency, and be more socially desirable and valid

functional outcome, but with greater ease and efficiency, and be more socially desirable and valid than the problem behavior that it replaces. In short, the replacement behavior must work better and faster and be useful and valued in a large number of environments. Determining which behavior to select as the replacement is an essential task in behavioral assessment for several reasons. If left unaddressed, the client may well substitute yet another (and potentially undesir- able) behavior in

unaddressed, the client may well substitute yet another (and potentially undesir- able) behavior in place of the target behavior that has been reduced because the functional need for the behavior still exists. For example, if hitting another person has been a successful means of escaping from a task demand and hitting is reduced without concurrent teaching of a replace- ment skill that serves the same function, the client may substitute self-injury as a means of escape. If a replacement skill

same function, the client may substitute self-injury as a means of escape. If a replacement skill is selected but it is not functionally equivalent, the client will not have an alternative that serves the same functional pur- pose. In this case, the new skill may be acquired but the target behavior is not reduced. Finally, if the replacement skill to be taught is functionally equivalent, but requires more response effort, or is not reinforced on a sufficiently dense schedule of reinforcement,

more response effort, or is not reinforced on a sufficiently dense schedule of reinforcement, then it is less likely to be dem- onstrated by the client and less likely to serve as a replacement in the long run. In the final analysis, the treatment of behavior problems is better understood as the effective teaching of function- ally equivalent, more adaptive replacement skills. This component of the assessment is critical.  The final component of behavioral assessment is a functional demonstration

assessment is critical.  The final component of behavioral assessment is a functional demonstration of the relationship between those antecedent, consequent, and organ- ismic variables and the target behavior. This process is termed functional behavior assessment if done without a set of empirical analog condi- tions and functional analysis if implemented with those analog conditions. Both components are described in detail elsewhere in the encyclopedia.  When complete, the behavioral assessment

are described in detail elsewhere in the encyclopedia.  When complete, the behavioral assessment process informs treatment planning and decision- making. In contrast to other, more traditional (and nonbehavioral) assessment approaches, however, behavioral assessment is ongoing. That is, while it does serve a predictive function by helping to elucidate relevant variables that impact the target behavior, it also serves a formative function (informing ongoing decision-making through analysis of

it also serves a formative function (informing ongoing decision-making through analysis of treatment effects) as well as a summative function (providing a framework for understanding the target behavior from the point of first identification through resolution and replacement).  ### Future Directions If advances in behavioral assessment over the past four decades have emphasized anything, it is that the process is dynamic and data-driven. Whether through the development of more sensitive rating

the process is dynamic and data-driven. Whether through the development of more sensitive rating scales for problems experienced by those with ASD or use of microtechnologies to more pre- cisely measure small units of response, the like- lihood that future iterations of behavioral assessment will better support treatment planning is without question. Ongoing work in several areas will be especially useful. The continuing analysis of antecedent stimuli, and particularly establishing operations,

useful. The continuing analysis of antecedent stimuli, and particularly establishing operations, will continue to support precision intervention. A better understanding of the relationship between information processing deficits, including those that impact academic performance, will support the development of more sensitive replacement skills that include curriculum modifications and accommodations. Recognizing that exceptional behavioral assess- ment science and technology is no guarantee that

Recognizing that exceptional behavioral assess- ment science and technology is no guarantee that utilization or implementation will proceed cor- rectly, future efforts to better understand the con- tingencies motivating organizations and systems serving those with ASD will be very valuable. The availability of sophisticated technologies to objectively evaluate small but significant units of responding in persons presents many exciting opportunities. While the relationship between exciting new

in persons presents many exciting opportunities. While the relationship between exciting new findings related to eye gaze in very young infants and toddlers with ASD (Klin et al. 2009) and later social development has yet to translate into intervention protocols demonstrat- ing long-term effects, this area seems one of the top candidates for a marriage of technology with behavioral science. Further, neuroimaging tech- nologies (e.g., fMRI) can map specific brain responses to presented stimuli,

neuroimaging tech- nologies (e.g., fMRI) can map specific brain responses to presented stimuli, and an exciting next step would be to evaluate whether behavioral treatment effects demonstrated through overt behavior lead to discernable change in brain func- tioning and whether collateral changes are also noted neurologically. Finally, as basic science continues to articulate ways in which those with ASD are (and are not) different from those who are neurotypical, the opportunity for greater

with ASD are (and are not) different from those who are neurotypical, the opportunity for greater inter- disciplinary behavioral assessment at the neuro- logical, genetic, and biological levels is exciting. Behavioral assessment is built on the science of specification, not speculation, and good measure- ment across disciplines has a synergistic effect. The next decades will be exciting ones.  ### See Also *   ▶Behavior Rating Scale (BRS) *   ▶Behavior Therapy *   ▶Functional Analysis *

### See Also *   ▶Behavior Rating Scale (BRS) *   ▶Behavior Therapy *   ▶Functional Analysis *   ▶Functional Analysis Screening Tool *   ▶Motivation Assessment Scale  Constantino, J. N., & Gruber, C. P. (2005). Social Responsiveness Scale (SRS). Los Angeles: Western Psychological Services. Cooper, J. O., Heron, T. E., & Heward, W. L. (2020). Applied behavior analysis (3rd ed.). Hoboken: Pearson Education. Fisher, W. W., Piazza, C. C., Bowman, L. G., Hagopian, L. P., Owens, J. C., & Slevin, I.

Education. Fisher, W. W., Piazza, C. C., Bowman, L. G., Hagopian, L. P., Owens, J. C., & Slevin, I. (1992). A comparison of two approaches for identifying reinforcers for persons with severe and profound disabilities. Journal of Applied Behavior Analysis, 25, 491–498. Klin, A., Lin, D. J., Gorrindo, P., Ramsey, G., & Jones, W. (2009). Two-year-olds with autism fail to orient towards human biological motion but attend instead to non-social, physical contingencies. Nature, 459, 257–261. Mash, E.

motion but attend instead to non-social, physical contingencies. Nature, 459, 257–261. Mash, E. J. (1979). What is behavioral assessment? Behavioral Assessment, 1, 23–29. Michael, J. (1993). Establishing operations. The Behavior Analyst, 16, 191–206. Nelson, R. O., & Hayes, S. C. (1979). Some current dimensions of behavioral assessment. Behavioral Assessment, 1, 1–16. O’Neill, R. E., Horner, R. H., Albin, R. W., Storey, K., & Sprague, J. R. (1990). Functional analysis of problem behavior: A

H., Albin, R. W., Storey, K., & Sprague, J. R. (1990). Functional analysis of problem behavior: A practical assessment guide. Sycamore: Sycamore Publishing. Paclawsky, T. R., Matson, J. L., Rush, K., Smalls, Y., & Vollmer, T. (2001). Assessment of the convergent validity of the questions about behavioral function scale with analogue functional analysis and the motivation assessment scale. Journal of Intellectual Disability Research, 45, 484–494.  ## Behavioral Assessment Scale of Oral Functions

of Intellectual Disability Research, 45, 484–494.  ## Behavioral Assessment Scale of Oral Functions in Feeding Stephanie Bendiske The Center For Children With Special Needs, Glastonbury, CT, USA  ### Description This rating scale assists practitioners to establish a baseline of oral functioning and feeding as well as measure change over time. It should be utilized in conjunction with an assessment that measures oral structure and muscle tone in chil- dren. This scale provides visual feedback of

that measures oral structure and muscle tone in chil- dren. This scale provides visual feedback of pro- gress as well as assists to plan and justify feeding therapy.  The rating scale includes the following oral motor skills: *   Jaw closure *   Loop closure over a spoon *   Tongue control *   Lip closure while swallowing *   Swallows food without excess loss *   Chews food (tongue/jaw control) *   Sips liquids *   Swallows liquids without excess loss *   Swallows food without coughing  ###

*   Sips liquids *   Swallows liquids without excess loss *   Swallows food without coughing  ### Historical Background This rating scale was developed by Margret Stratton and published in the American Journal of Occupational Therapy in November 1981. The rating scale was developed for people with multi- ple handicaps and developmental disabilities. Ms. Stratton utilized this rating scale within the J.N. Adam Developmental Center in Perrysburg, New York.  ### Psychometric Data This is a

within the J.N. Adam Developmental Center in Perrysburg, New York.  ### Psychometric Data This is a criterion-based rating scale. Standard scores are not calculated. The client's oral motor functioning is rated on a scale from 0 to 5 with 5 being normal and 0 being disordered or passive movement.  Stratton, M. (1981). Behavioral assessment scale of oral functions in feeding. American Journal of Occupa- tional Therapy, 35(11), 719–721.  ## Behavioral Curricula Marjorie H. Charlop1, Benjamin R.

Occupa- tional Therapy, 35(11), 719–721.  ## Behavioral Curricula Marjorie H. Charlop1, Benjamin R. Thomas2 and Catherine Miltenberger3 1Claremont McKenna College, Claremont, CA, USA 2Claremont Graduate University, Claremont, CA, USA 3Trumpet Behavioral Health, Lakewood, CO, USA  ### Definition Broadly defined, curriculum refers to the con- tent and order of instruction, the instructional strategies used to teach this content, and any assessment or other materials used to implement the

strategies used to teach this content, and any assessment or other materials used to implement the educational program (Olley 1999, 2005). Curriculum is also structured by a conceptual framework to guide the treatment model in addressing the core deficits of autism spectrum disorder (ASD) and promoting developmental outcomes (Wong et al. 2015). Behavioral cur- ricula are a specific type of curriculum that incorporates behavioral principles (e.g., an emphasis on functional behavior, operatio-

that incorporates behavioral principles (e.g., an emphasis on functional behavior, operatio- nalizing behaviors and objectives, and measur- ing behavior). Behavioral curricula recognize the importance of individualizing the content, sequence, and method of instruction to best meet each individual’s needs (Gould et al. 2011). They also tend to target the reduction and replacement of interfering behaviors (e.g., stereotypic behavior, tantrums; Olley 2005). The characteristics of behavioral

behaviors (e.g., stereotypic behavior, tantrums; Olley 2005). The characteristics of behavioral curricula are especially appropriate for children with ASD for a couple of reasons. First, behavioral strate- gies have been found to improve the communi- cation, social, and other skills of children with ASD (Schreibman and Ingersol 2005; Wong et al. 2015). Second, children with ASD differ in their individual strengths and weaknesses and are believed to benefit from individualized edu- cational

individual strengths and weaknesses and are believed to benefit from individualized edu- cational programs (Olley 1999).  ### Historical Background Behavioral treatment approaches are the most common treatment programs for ASD (Weitlauf et al. 2014). Accordingly, recent decades have seen a marked increase in the development of educational curricula for children with ASD (Olley 2005; Wong et al. 2015). Many of these have been behaviorally based curricula.  ### Current Knowledge Treatment goals

2015). Many of these have been behaviorally based curricula.  ### Current Knowledge Treatment goals for children with ASD include improving social behavior and reducing interfer- ing behavior to increase functional skills, social integration, and independence (Myers and Johnson 2007). Like all curricula, behavioral cur- ricula can use a variety of instructional strategies to target language, social, academic, adaptive, and other skills (Olley 2005). Behavioral curricula incorporate behavioral

academic, adaptive, and other skills (Olley 2005). Behavioral curricula incorporate behavioral principles including an emphasis on functional behavior, operationalizing behaviors and objectives, measuring behaviors, individualizing programs to meet each child’s needs, and targeting the acquisition of prerequisite skills and the reduction of interfering behaviors. These components are briefly described below.  #### Functional Behavior Behavioral curricula focus on functional behav- iors.

described below.  #### Functional Behavior Behavioral curricula focus on functional behav- iors. Functional behaviors are behaviors that are useful to the individual. More specifically, behav- iors are considered functional if they allow the individual to better navigate his or her current environment, are required to learn or likely to lead to the acquisition of other functional behav- iors, increase the individual’s ability to navigate other beneficial environments (e.g., general edu- cation

the individual’s ability to navigate other beneficial environments (e.g., general edu- cation classrooms), or make others more likely to interact with the individual (e.g., eliminating dis- ruptive or aggressive behaviors may make peers more willing to initiate interactions with the indi- vidual; Cooper et al. 2007). Many individuals with ASD require treatment in numerous areas. Instructors should attempt to identify and target behaviors that are most useful to the individual’s current

should attempt to identify and target behaviors that are most useful to the individual’s current functioning (Cooper et al. 2007). To deter- mine which behaviors would be most useful, instructors should observe the individual in his or her natural environment and include parents and others familiar with the individual (Cooper et al. 2007; Olley 2005).  #### Operationalizing Behaviors and Objectives Behavioral curricula emphasize the importance of operationalizing behaviors and objectives. All

Behavioral curricula emphasize the importance of operationalizing behaviors and objectives. All targeted behaviors should be objectively, clearly, and completely defined. To be objective, the behavior should be described in observable terms. To be clear and complete, the definition should provide comprehensive criteria for behav- iors that will be included or excluded (Cooper et al. 2007). Defining targeted behaviors in this way allows teachers and other people working with the individual to count

behaviors in this way allows teachers and other people working with the individual to count the occurrence of the behaviors and track student progress. Similarly, behavioral programs operationalize objectives or student goals. For each targeted behavior, there should be specific and objective criterion for mastery (Gould et al. 2011). This criterion should reflect the level of competence that allows the individual to use the behavior to successfully navigate his or her natural environ- ments

the individual to use the behavior to successfully navigate his or her natural environ- ments (Cooper et al. 2007).  #### Measuring Behavior Behavioral curricula place a strong emphasis on measuring behavior. Clear and comprehensive operational definitions of targeted behaviors allow teachers and others working with the indi- vidual to measure the individual’s demonstration of behaviors. An initial measure of the individ- ual’s ability allows the instructors to determine his or her current level

measure of the individ- ual’s ability allows the instructors to determine his or her current level of ability. Measuring the targeted behaviors during intervention provides instructors with objective information on student progress (Cooper et al. 2007).  #### Individualization Behavioral curricula are usually designed to be individualized and meet each individual’s needs (Najdowski et al. 2014; Olley 2005). This may be especially important for individuals with ASD, who share common areas of

Olley 2005). This may be especially important for individuals with ASD, who share common areas of impairment but dem- onstrate considerable variability in their abilities and deficits. Measuring the individual’s behavior allows instructors to identify that individual’s need and focus the curricula accordingly. Regu- lar measurement of the individual’s progress pro- vides instructors with information on that individual’s response to different instructional strategies. Again, this information can

on that individual’s response to different instructional strategies. Again, this information can be used to identify instructional strategies that are more effective for that individual student and to update their program content as necessary (Cooper et al. 2007).  #### Targeting Prerequisite Skills and Interfering Behaviors Many individuals with ASD lack basic prerequi- site skills and demonstrate interfering behaviors. Behavioral curricula tend to target these behav- iors early in an

interfering behaviors. Behavioral curricula tend to target these behav- iors early in an individual’s program. Prerequi- site skills refer to behaviors that facilitate later learning. For example, behavioral programs often target compliance (i.e., following the instructor’s instructions), nonverbal and verbal imitation, and attending behaviors (e.g., remaining seated, focusing on presented stimuli; Olley 2005). Consistently demonstrating these and related skills allows the individual to benefit

Olley 2005). Consistently demonstrating these and related skills allows the individual to benefit from instruction and facilitates the acquisition of later skills. Interfering behaviors hinder the individual’s ability to learn. These may be inappropriate behaviors, such as stereotypy, aggression, self- injury, or other issues, including sleep distur- bances or dietary concerns (Olley 2005). These and related behaviors and issues affect the indi- vidual’s ability to participate in and concentrate

related behaviors and issues affect the indi- vidual’s ability to participate in and concentrate on instruction. Reducing or eliminating these inappropriate behaviors or concerns increases the individual’s ability to focus on and benefit from instruction.  #### Empirical Support The components of behavioral curricula are consistent with current best practices for ASD treatment. Existing empirical evidence indicates that effective programs use assessment and pro- gress monitoring to individualize

indicates that effective programs use assessment and pro- gress monitoring to individualize program content and instruction to meet the individual’s needs and facilitate his or her independence in his or her natural environments. Therefore, it is recommended that programs for individuals with ASD include these elements (Crimmins et al. 2001; National Research Council 2001; New Jersey Department of Education 2004). Fur- ther, there is a large and growing body of research indicating that

of Education 2004). Fur- ther, there is a large and growing body of research indicating that behavioral strategies can improve the language, social, and other skills of children with ASD. Because behavioral curricula incorpo- rate these components and strategies, there is rea- son to believe that they may be effective. However, there is relatively little research examining the effectiveness of curricula content (Olley 1999). More specifically, there is a lack of research examining how specific

curricula content (Olley 1999). More specifically, there is a lack of research examining how specific content and sequence of instruction affect the progress and long-term outcomes of children with ASD. Because of the importance of individualizing each student’s program, the necessity of this type of research is unclear (Olley 2005). However, more information could be useful in developing effective programs that best facilitate individual’s progress. Additional research is also needed to validate

programs that best facilitate individual’s progress. Additional research is also needed to validate different behavioral curricula. Researchers and program personnel have conducted studies exam- ining the effects of or outcomes associated with different behavioral curricula (e.g., Arick et al. 2003). However, no single curricula has the empirical support required to meet the criteria for an efficacious treatment (Olley 1999, 2005).  #### Existing Behavioral Curricula There are numerous

an efficacious treatment (Olley 1999, 2005).  #### Existing Behavioral Curricula There are numerous behavioral curricula designed for children with ASD and other disabilities. Three of these are described below. However, these descriptions only provide a brief overview of the program. For more complete information, please refer to the program manuals or other references.  ##### The Early Start Denver Model (ESDM) The Early Start Denver Model (ESDM; Rogers and Dawson 2010) is a comprehensive and

Model (ESDM) The Early Start Denver Model (ESDM; Rogers and Dawson 2010) is a comprehensive and evidence-based behavioral developmental inter- vention for young children with ASD. Goals of ESDM span all developmental domains with an emphasis on targeting the core deficits of ASD and teaching behaviors in a typical developmen- tal sequence. Research on using the ESDM cur- riculum and treatment approach has shown gains for young children with ASD in IQ, expressive and receptive language, and

approach has shown gains for young children with ASD in IQ, expressive and receptive language, and social behavior (Dawson et al. 2010). After 1–2 years of treat- ment, children have also experienced diagnostic shifts toward a milder diagnosis, and electroen- cephalography (EEG) measures of their engage- ment and cognitive processing were comparable to typically developing children (Weitlauf et al. 2014).  The structure of ESDM programs is a blend of behavioral, play-based, and

(Weitlauf et al. 2014).  The structure of ESDM programs is a blend of behavioral, play-based, and relationship-based approaches that are organized by empirical knowledge on child development and ASD. The standardized ESDM curriculum uses the Early Start Denver Model Curriculum Checklist assess- ment to guide individualized behavioral pro- grams. Teaching strategies used are empirically supported methods of applied behavior analysis, and data are used to monitor progress and inform modifications

methods of applied behavior analysis, and data are used to monitor progress and inform modifications to the program.  There are several core components of ESDM, including a focus on interpersonal interactions and positive affect, reciprocal and functional imi- tation with facial expressions and objects, shared engagement with joint activities, verbal and non- verbal communication training, and embedding instruction within naturally occurring play and daily routines (Rogers and Dawson 2010).

embedding instruction within naturally occurring play and daily routines (Rogers and Dawson 2010).  Each ESDM program has a primary therapist in the home who has ESDM training and holds a certification. Along with a multidisciplinary team, the therapist develops a partnership with parents by teaching strategies to use in the home during daily routines and play (Rogers and Dawson 2010). The ESDM curriculum also offers a companion manual for parents, An Early Start for Your Child with Autism

curriculum also offers a companion manual for parents, An Early Start for Your Child with Autism (Rogers et al. 2012), that can be used outside of sessions to support the program.  ##### Strategies for Teaching Based on Autism Research (STAR) The Strategies for Teaching Based on Autism Research (STAR; Arick et al. 2004) program pro- vides instructors with assessment materials, les- son plans, activities, materials, and data collection systems (Arick et al. 2004). The program targets children’s

materials, and data collection systems (Arick et al. 2004). The program targets children’s receptive, expressive, and spontaneous language; adaptive skills; academics; play; and social skills. These skills are targeted via discrete trial training (DTT), pivotal response training (PRT), and functional routines. All three of these are empirically supported behavioral strategies. The STAR program also recognizes the impor- tance of and provides teachers with strategies for promoting skill

also recognizes the impor- tance of and provides teachers with strategies for promoting skill integration and generalization.  Research indicates that children with ASD who are exposed to the STAR program do make progress. Special education professionals pro- vided teachers and other staff members with yearly workshops that used the STAR program materials to review DTT, PRT, functional rou- tines, and data collection strategies. Over the next 12–16 months, many of the teachers and staff

tines, and data collection strategies. Over the next 12–16 months, many of the teachers and staff members’ students with ASD demonstrated significant improvement in language, social skills, academics, and autonomy (Arick et al. 2003). Although promising, more research is needed to determine the extent to which the STAR program caused this progress.  ##### The Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) The Verbal Behavior Milestones Assessment and Placement Program

and Placement Program (VB-MAPP) The Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP; Sundberg 2008) includes an assessment, curriculum guide, and progress monitoring system that are used to develop language programs for young children with ASD and other language delays (Sundberg 2008). The targeted skills, assessment, and curric- ulum suggestions are derived from B. F. Skinner’s work on verbal behavior, developmental research, and empirically based behavioral principles and

work on verbal behavior, developmental research, and empirically based behavioral principles and strategies (Sundberg 2008).  The VB-MAPP is composed of the milestone assessment, the barriers assessment, the transition assessment, task analysis and skills tracking, and placement and IEP goals (Gould et al. 2011). The milestone assessment examines the child’s current language and related abilities. The barriers assess- ment is intended to identify existing interfering behaviors or absent

The barriers assess- ment is intended to identify existing interfering behaviors or absent prerequisite skills that could affect the child’s ability to learn. The tran- sition assessment evaluates skills that the child needs to transition to and succeed in new and less restrictive environments. The task analysis and skills tracking system operationally defines over 900 skills from the different targeted areas. This can provide more detailed data about the child’s initial abilities and progress

areas. This can provide more detailed data about the child’s initial abilities and progress and guide program development. After assessing the child, instructors can consult the placement and IEP section for recommendations for the child’s goals and educational settings.  The VB-MAPP has undergone field testing. However, more research is needed to establish its psychometric properties and examine its effec- tiveness (Gould et al. 2011).  ### Future Directions There has been an increase in the

its effec- tiveness (Gould et al. 2011).  ### Future Directions There has been an increase in the development of and research examining behavioral curricula for children with ASD. However, many of these studies have limited internal validity, small sam- ples, and examine program instruction and con- tent together (Arick et al. 2003; Olley 1999). Future research should address these issues. Lon- gitudinal research should also be used to examine the long-term effectiveness of different programs.

research should also be used to examine the long-term effectiveness of different programs. In addition, many of the existing behavioral curricula are designed for young or high- functioning children with ASD. There is a need to develop empirically supported behavioral cur- ricula for older and low-functioning individuals with ASD (Olley 1999, 2005).  These and related areas of research will pro- vide researchers and practitioners with the infor- mation needed to develop effective behavioral

vide researchers and practitioners with the infor- mation needed to develop effective behavioral curricula for individuals with ASD. This informa- tion will also help instructors to select appropriate interventions for individuals with ASD. Doing so will facilitate individuals’ progress and promote independent adult outcomes.  ### See Also *   ▶Curriculum *   ▶Pivotal Response Training  Arick, J. R., Young, H. E., Falco, R. A., Loos, L. M., Krug, D. A., Gense, M. H., et al. (2003). Designing an

R., Young, H. E., Falco, R. A., Loos, L. M., Krug, D. A., Gense, M. H., et al. (2003). Designing an outcome study to monitor the progress of students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18, 75–88. Arick, J. R., Loos, L., Falco, R., & Krug, D. A. (2004). The STAR program: Strategies for teaching based on autism research, levels I, II, and III. Austin: PRO-ED. Cooper, J. O., Heron, T. E., & Heward, W. L. (2007). Applied behavior analysis (2nd

Austin: PRO-ED. Cooper, J. O., Heron, T. E., & Heward, W. L. (2007). Applied behavior analysis (2nd ed.). Upper Saddle River: Merrill/Prentice Hall. Crimmins, D. B., Durand, V. M., Theurer-Kaufman, K., & Everett, J. (2001). Autism program quality indicators: A self-review and quality improvement guide for schools and programs serving students with autism spectrum disorders. http://www.p12.nysed.gov/ specialed/autism/apqi.htm. Retrieved 12 May 2011. Dawson, G., Rogers, S., Munson, J., Smith, M.,

specialed/autism/apqi.htm. Retrieved 12 May 2011. Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., . . . Varley, J. (2010). Randomized, con- trolled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125(1), e17–e23. Gould, E., Dixon, D. R., Najdowski, A. C., Smith, M. N., & Tarbox, J. (2011). A review of assessments for deter- mining the content of early intensive behavioral inter- vention programs for autism spectrum disorders.

the content of early intensive behavioral inter- vention programs for autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 990–1002. Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120, 1162–1182. Najdowski, A. C., Gould, E. R., Lanagan, T. M., & Bishop, M. R. (2014). Designing curriculum programs for children with autism. In Handbook of early intervention for autism spectrum disorders (pp. 179–204). New York: Springer.

In Handbook of early intervention for autism spectrum disorders (pp. 179–204). New York: Springer. National Research Council. (2001). Educating children with autism (Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education). Washington, DC: National Academy Press. New Jersey State Department of Education. (2004). Autism program quality indicators: A self-review and quality improvement guide for programs serving young stu- dents

indicators: A self-review and quality improvement guide for programs serving young stu- dents with autism spectrum disorder. http://celebratethe children.org/old/Documents/Indicators.pdf. Retrieved 12 May 2011. Olley, J. G. (1999). Curriculum for students with autism. School Psychology Review, 28(4), 595–607. Olley, J. G. (2005). Curriculum and classroom structure. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental dis- orders (3rd ed., pp.

Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental dis- orders (3rd ed., pp. 863–881). Hoboken: Wiley. Partington, J. W. (2008). The assessment of basic language and learning skills-revised: Scoring instructions and IEP development guide. Pleasant Hill: Behavior Analysts. Partington, J. W., Bailey, A., & Pritchard, J. K. (2010). Data on the developmental patterns of specific language and learning skills of typically developing children as mea- sured by the ABLLS-R.

specific language and learning skills of typically developing children as mea- sured by the ABLLS-R. http://www.behavioranalysts. com/data.pdf. Retrieved 30 June 2011. Rogers, S. J., & Dawson, G. (2010). Early start Denver model for young children with autism: Promoting lan- guage, learning, and engagement. New York: Guilford Press. Rogers, S. J., Dawson, G., & Vismara, L. A. (2012). An early start for your child with autism: Using everyday activities to help kids connect, communicate, and

start for your child with autism: Using everyday activities to help kids connect, communicate, and learn. New York: Guilford Press. Schreibman, L., & Ingersol, B. (2005). Behavioral inter- ventions to promote learning in individuals with autism. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 882–896). Hoboken: Wiley. Sundberg, M. L. (2008). Verbal behavior milestones assessment and placement program (VB-MAPP).

Sundberg, M. L. (2008). Verbal behavior milestones assessment and placement program (VB-MAPP). Concord: AVB Press. Weitlauf, A. S., McPheeters, M. L., Peters, B., Sathe, N., Travis, R., Aiello, R., . . . Warren, Z. (2014). Therapies for children with autism spectrum disorder: Behavioral interventions update [Internet]. Rockville: Agency for Healthcare Research and Quality (US); 2014 Aug. (Comparative Effectiveness Review, No. 137.) Intro- duction. Available from: https://www.ncbi.nlm.nih.

Effectiveness Review, No. 137.) Intro- duction. Available from: https://www.ncbi.nlm.nih. gov/books/NBK241433/ Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., et al. (2015). Evidence- based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45, 1951–1966.  ## Behavioral Development Questionnaire Anne Snow Child Study Center, Autism Program, Yale University, New Haven,

Development Questionnaire Anne Snow Child Study Center, Autism Program, Yale University, New Haven, CT, USA  ### Synonyms BDQ; Wing subgroups questionnaire (WSQ)  ### Description The Behavioral Development Questionnaire (BDQ) is a measure that assesses several behav- ioral domains of autism spectrum disorders (ASD) in an attempt to subclassify individuals on the autism spectrum based on their behavioral topog- raphy. It is based on the subclassification scheme proposed by Wing and colleagues,

topog- raphy. It is based on the subclassification scheme proposed by Wing and colleagues, which identi- fied the four following ASD subtypes: aloof, pas- sive, active-but-odd, and normal (Wing and Gould 1979, please see section “Historical Back- ground,” below). The behavioral domains assessed by the BDQ focus on quality of social interaction but also include symbolic play, motor imitation, nonverbal and verbal communication, daily routines, stereo- typed behavior, and motor coordination

nonverbal and verbal communication, daily routines, stereo- typed behavior, and motor coordination (Castelloe and Dawson 1993). The BDQ consists of 13 groups of four descriptions of behavior, each description corresponding to one of the four ASD subgroups. Parents are asked to rate each descrip- tion on a 7-point Likert scale with regard to how well it describes their child (0 ¼ never, 6 ¼ always). Additionally, for each group of items, parents are asked to select the one description that best

Additionally, for each group of items, parents are asked to select the one description that best describes their child. Only the item- level ratings are used in scoring the BDQ. As each description corresponds to a social subtype, the BDQ is scored by summing the rat- ings for each subtype. Missing items are prorated based on the average score of available items. The child is assigned to the subtype for which he or she received the highest score.  ### Historical Background As stated previously,

for which he or she received the highest score.  ### Historical Background As stated previously, the BDQ is based on the ASD subtyping system developed by Lorna Wing and Judith Gould (1979). Wing and Gould’s seminal paper (1979) was an epidemiological study of all children living in Camberwell, London, aged under 15 years who showed ASD- like impairments. The researchers found that the social impairment that characterized this group was expressed in one of four ways. Social aloof- ness was

impairment that characterized this group was expressed in one of four ways. Social aloof- ness was characterized by indifferent social behavior. Passive interaction involved the absence of spontaneous approach behavior but the acceptance of approaches made by other chil- dren. Active but odd interaction included children who spontaneously approached other children but their interactions were one-sided and character- ized by repetitive preoccupation with certain phrases or topics of

were one-sided and character- ized by repetitive preoccupation with certain phrases or topics of conversation. The fourth group was the appropriate interaction subtype, which included children whose social interactions were normal for their level of cognitive develop- ment. These groups were proposed to exist on a continuum, with the aloof individuals representing the most severe end of the spectrum of impairment, and the active but odd individuals at the mild end. It was then hypothesized that

of impairment, and the active but odd individuals at the mild end. It was then hypothesized that individuals with ASD could be subclassified based on these catego- ries of social impairment. Furthermore, Wing pro- posed that these social classifications would correlate with other patterns of behavior. Indeed, the patterns of behavior tended to occur together. The aloof group comprised the highest proportion of children with autism and was significantly associ- ated with a history of Kanner’s

proportion of children with autism and was significantly associ- ated with a history of Kanner’s (1943) “typical” autism (socially aloof, repetitive routines, speech characterized by reversal of pronouns and idiosyn- cratic phrases). Patterns of abnormal behavior were also evident between the three groups. Stereotyped and repetitive behavior characterized the aloof group, and repetitive speech and behavior patterns were seen more frequently in the passive and active but odd groups (Wing and

and behavior patterns were seen more frequently in the passive and active but odd groups (Wing and Gould 1979).  ### Psychometric Data In the initial study of the BDQ, the questionnaire was completed by parents of children with autism (n ¼ 34) or PDD-NOS (n ¼ 6) between the ages of 4 and 20 years (Castelloe and Dawson 1993). Separately, clinicians assigned the children to a Wing subtype based on a 30-min observation. Agreement between the BDQ classification and classification based on the

on a 30-min observation. Agreement between the BDQ classification and classification based on the clinical observation was good, at 73%. Further analyses revealed that subtype assignment by the clinician was the most powerful predictor of BDQ assignment, indicat- ing good external validity for the BDQ. The authors also examined the consistency of parents’ ratings across the 13 groups of descrip- tions, to assess the degree to which each subtype was rated in the same manner across behavioral

tions, to assess the degree to which each subtype was rated in the same manner across behavioral domains. These analyses revealed that for all three subgroups, parents ranked the descriptions in a consistent manner. Correlations between the sum- mary scores were computed to assess the extent to which each subtype was distinct from the others. The correlation between the aloof and passive groups was  .02, between the passive and active but odd groups it was  .17, and between the aloof and active

.02, between the passive and active but odd groups it was  .17, and between the aloof and active but odd groups it was  .70. The high negative correlation between the aloof and active but odd groups was interpreted as evidence that these subtypes do in fact fall at two ends of a continuum.  In terms of behavioral correlates of the Wing subtypes, Castelloe and Dawson (1993) found that subtype classification was significantly related to mental age and score on the Childhood Autism Rating Scale

classification was significantly related to mental age and score on the Childhood Autism Rating Scale (CARS), a measure of ASD symptoms (Schopler et al. 1986). The aloof group had the lowest mean mental age, the passive group occupied the intermediate position, and the active but odd group had the highest mean mental age. CARS scores indicated a similar trend: the aloof group had the most severe ASD symptomatology, the active but odd group had the least severe ASD symptoms, and the passive group

symptomatology, the active but odd group had the least severe ASD symptoms, and the passive group occupied the intermediate position. A trend in the same direc- tion was seen for IQ, but it did not reach significance.  Overall, the data support the validity of the BDQ for classifying children with ASD into sub- groups based on Wing’s classification system.  ### Clinical Uses The BDQ has been recommended as a useful addition to the assessment and treatment planning process (Powers 2005).

recommended as a useful addition to the assessment and treatment planning process (Powers 2005). Categorization of individ- uals with ASD according to social impairments allows for prediction of corresponding behavioral and cognitive differences (Castelloe and Dawson 1993). It has been suggested that the utility of such subtyping within ASD has the greatest clinical implications for the planning of treatment services (Wing and Attwood 1987).  ### See Also *   ▶Spectrum/Continuum of Autism *

of treatment services (Wing and Attwood 1987).  ### See Also *   ▶Spectrum/Continuum of Autism *   ▶Subtyping Autism *   ▶Wing, Lorna  Castelloe, P., & Dawson, G. (1993). Subclassification of children with autism and pervasive developmental dis- order: A questionnaire based on Wing’s subgrouping scheme. Journal of Autism and Developmental Disor- ders, 23, 229–241. Kanner, L. (1943). Childhood psychosis: Initial studies and new insights. Washington, DC: Winston. Powers, M. D. (2005). Behavioral

Initial studies and new insights. Washington, DC: Winston. Powers, M. D. (2005). Behavioral assessment of individ- uals with autism. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 817–830). Hobo- ken: Wiley. Schopler, E., Reichler, R. J., & Renner, B. R. (1986). The childhood autism rating scale (CARS) for diagnostic screening and classification of autism. New York: Irvington. Volkmar, F. R., & Klin, A. (2005). Issues

and classification of autism. New York: Irvington. Volkmar, F. R., & Klin, A. (2005). Issues in the classifica- tion of autism and related conditions. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 5–41). Hoboken: Wiley. Wing, L., & Attwood, A. (1987). Syndromes of autism and atypical development. In D. J. Cohen & A. Donnelan (Eds.), Handbook of autism (pp. 3–17). New York: Wiley. Wing, L., & Gould, J. (1979). Severe

(Eds.), Handbook of autism (pp. 3–17). New York: Wiley. Wing, L., & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Developmental Disorders, 9, 11–29.  ## Behavioral Disorder *   ▶Conduct Disorder  ## Behavioral Flexibility *   ▶Treatment for Higher-Order Restricted, Repet- itive Behaviors  ## Behavioral Health Rehabilitation (BHR) Services Paul K. Cavanagh Vocational Independence Program,

Behavioral Health Rehabilitation (BHR) Services Paul K. Cavanagh Vocational Independence Program, New York Institute of Technology, Central Islip, NY, USA  ### Definition Behavioral Health Rehabilitation Services (BHRS) is a term used for a specific application of a Medicaid-funded interdisciplinary approach for a child or adolescent diagnosed with a serious emotional or behavioral disorder. The type of approach is sometimes referred to as a “wrap- around approach.” Several states, and primarily

of approach is sometimes referred to as a “wrap- around approach.” Several states, and primarily Pennsylvania, support the provision of Behavioral Health Rehabilitation Services when a licensed psy- chologist has deemed the service medically nec- essary as part of a Medicaid-funded Early and Periodic Screening, Diagnosis and Treatment (EPSDT) service. “The Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) service is Medicaid’s comprehensive and pre- ventive child health program

and Treatment (EPSDT) service is Medicaid’s comprehensive and pre- ventive child health program for individuals under the age of 21. EPSDT was defined by law as part of the Omnibus Budget Reconcilia- tion Act of 1989 (OBRA ‘89) legislation and includes periodic screening, vision, dental, and hearing services” (Centers for Medicare & Med- icaid Services n.d.). The Medicaid EPSDT reg- ulations provide for the provision of other necessary health care, when it will “correct or ameliorate defects,

for the provision of other necessary health care, when it will “correct or ameliorate defects, and physical and mental ill- nesses and conditions discovered by the screen- ing services” (Centers for Medicare & Medicaid Services n.d.).  ### Historical Background The United States Congress’s Omnibus Recon- ciliation Act of 1989 created a Medicaid service called the Early and Periodic Screening, Diagno- sis, and Treatment (EPSDT) services. During the 1990s, several states, most notably the state

sis, and Treatment (EPSDT) services. During the 1990s, several states, most notably the state of Pennsylvania’s Department of Public Welfare, supported the provision of Behavioral Health Rehabilitation Services when identified as medi- cally necessary by a licensed psychologist or psychiatrist as part of an EPSDT evaluation. While, in theory, Behavioral Health Rehabilita- tion Services can be provided in any state as part of their Medicaid EPSDT services, Pennsylvania has been the most

be provided in any state as part of their Medicaid EPSDT services, Pennsylvania has been the most consistent at regularly provid- ing this service. Behavioral Health Rehabilitation (BHR) Ser- vices is essentially a form of wraparound services that is supported through Medicaid funding. The use of Behavioral Health Rehabilitation Services develops during the 1990s concurrent with the national development of wraparound services for youth with complicated mental health and behav- ioral needs in

of wraparound services for youth with complicated mental health and behav- ioral needs in several discreet places throughout the country. See the historical section of the Ency- clopedia listing for wraparound services for more information on the development of the wrap- around philosophy.  ### Rationale or Underlying Theory The key provision in Medicaid-funded Behavioral Health Rehabilitation Services is that a licensed psychologist or psychiatrist has determined that a child or adolescent has

is that a licensed psychologist or psychiatrist has determined that a child or adolescent has a medical need for the services in order to ensure the correction or ame- lioration of defects and physical and mental ill- nesses and conditions. Behavioral Health Rehabilitation Services are individualized and interdisciplinary services for a child or adolescent with a significant behav- ioral health disability provided in the natural settings of their family or local community. An essential feature

provided in the natural settings of their family or local community. An essential feature of BHR services is that they are designed and delivered at the sites where the problematic behaviors occur. Based on a philos- ophy consistent with wraparound services, the goal of BHR services is not to try to understand problematic behaviors in the abstract, but rather to provide direct intervention in the natural con- text with the professionals designing the inter- ventions able to learn and respond

natural con- text with the professionals designing the inter- ventions able to learn and respond directly from the child’s behavioral responses to the interventions.  ### Goals and Objectives Behavioral Health Rehabilitation (BHR) Services are services based on a wraparound philosophy designed to provide comprehensive treatment to children and adolescents with a serious emotional or behavioral disorder who cannot make progress with the usual array of discreet services. An essen- tial feature of

who cannot make progress with the usual array of discreet services. An essen- tial feature of BHR services is the coordination, or wraparound, of services in the child or adoles- cent’s natural environments of home, school, and the local community. A primary goal of BHR services is to develop a natural community support network, and self- regulating behaviors on the part of the child or adolescent, that can be maintained with the ordi- nary array of services. Thus, a key outcome for BHR

that can be maintained with the ordi- nary array of services. Thus, a key outcome for BHR services is to eliminate the need for BHR services. BHR clinicians and other clinicians in the child or adolescent’s natural environment, as well as with other concerned community members, work with the family of the child receiving ser- vices. Other concerned community members may include school administrators and teachers, mem- bers of a family’s religious congregation, and civic officials, as well as

and teachers, mem- bers of a family’s religious congregation, and civic officials, as well as staff at community, health, or recreation centers. BHR clinicians aid in developing and guiding a natural community support network. As a team, they develop individ- ualized goals to promote appropriate behavior, activities, and academic and social skills in the child or adolescent’s natural home, school, and community environments.  ### Treatment Participants Treatment participants for Behavioral

and community environments.  ### Treatment Participants Treatment participants for Behavioral Health Rehabilitation (BHR) Services are children or adolescents who have been diagnosed with a severe emotional or behavioral disorder by a psy- chiatrist or psychologist after a face-to-face clini- cal evaluation. The prescribing clinician must identify that the BHR services are necessary in order to ameliorate or correct the identified severe emotional or behavioral disorder.  ### Treatment

to ameliorate or correct the identified severe emotional or behavioral disorder.  ### Treatment Procedures Behavioral Health Rehabilitation (BHR) Services are not based on a single therapeutic model addressing the therapeutic needs of the children or adolescents with severe emotional or behav- ioral disorders identified as requiring the BHR services.  BHR services are based upon a wraparound philosophy of an individualized treatment plan utilizing all community resources based in and delivered at

of an individualized treatment plan utilizing all community resources based in and delivered at the place (or places) where the prob- lematic behaviors occur.  While BHR services are not exactly the same as wraparound services – the implementation of BHR services is consistent with the wraparound philosophy The National Wraparound Initiative has developed a set of ten Principles of Wrap- around. These ten principles are as follows: 1.  Family voice and choice: An emphasis on the primary

These ten principles are as follows: 1.  Family voice and choice: An emphasis on the primary importance of goals and perspective of the individual receiving services and their family and advocates in the development of the wraparound process. This principle stresses the importance of intentional activi- ties to illicit and include the perspective of the individual receiving services and their family and advocates. 2.  Team based: This principle stresses the importance of collaborative effort of

and advocates. 2.  Team based: This principle stresses the importance of collaborative effort of family members, professionals, and other stake- holders committed to the family’s well-being over an extended period of time. The choice of team members should be largely driven by the person receiving services and their family and advocates. 3.  Natural supports: To the greatest extent pos- sible, a wraparound plan of service should utilize the natural support systems of family members, friends,

a wraparound plan of service should utilize the natural support systems of family members, friends, neighbors, church, and community members. The plan should also include the regular support structures that exist in the community via school systems, church congregations, community centers, local government, etc. 4.  Collaboration: The decision-making process in developing a wraparound plan of service should be based on a consensus approach that includes input from all team members. 5.

of service should be based on a consensus approach that includes input from all team members. 5.  Community based: Wraparound services should adhere to a principle of provision in the least-restrictive setting possible. 6.  Culturally competent: Team designation, ser- vice planning, and service delivery should demonstrate “respect for the values, prefer- ences, beliefs, culture and identity of the child/youth and family, and their community” (Bruns et al. 2008, p. 7). 7.  Individualized:

of the child/youth and family, and their community” (Bruns et al. 2008, p. 7). 7.  Individualized: Wraparound services need to be uniquely developed for the individual in need and their family. The planning for ser- vices should draw upon the best empirical evidence of effective treatment and upon community and professional experience. However, the services should not be assem- bled from a static list of available services. 8.  Strengths based: A key in the development of a wraparound plan of

list of available services. 8.  Strengths based: A key in the development of a wraparound plan of service is to identify, “build on, and enhance the capabilities, knowledge, skills, and assets of the child and family, their community, and other team members” (p. 8). 9.  Unconditional: The origins of the wrap- around process grew out of a need to provide quality services to individuals with severe and complex behaviors. It is understood at the outset that this will be a difficult and challenging

and complex behaviors. It is understood at the outset that this will be a difficult and challenging process. Inherent in the develop- ment of a wraparound plan of service is a commitment to see the process through despite setbacks and unanticipated behavior, events, or outcomes. There needs to be an unwavering commitment on the part of the team to continually adapt the plan of service until progress is made and there is consensus that a wraparound process is no longer needed. 10. Outcome based:

is made and there is consensus that a wraparound process is no longer needed. 10. Outcome based: Wraparound plans of service identify measurable outcomes and indicators of progress and success. The team measures and evaluates these measures on an ongoing basis and modifies plans accordingly (Bruns et al. 2008).  ### Efficacy Information As of the summer of 2011, there is little or no published research specifically addressing the efficacy of the Behavioral Health Rehabilitation approach to service

specifically addressing the efficacy of the Behavioral Health Rehabilitation approach to service delivery. The Institute for Behavior Change reports on their website information about research conducted by Dr. Natasha K. Brown and Erica Richman of the University of North Carolina at Chapel Hill. As reported on their website, the researchers “studied 301 treatment records of children age 3 to 17 between 2002 and 2007. They found that Behavioral Health Rehabilita- tion Services (BHRS) as

to 17 between 2002 and 2007. They found that Behavioral Health Rehabilita- tion Services (BHRS) as implemented by the staff of the Institute for Behavior Change had a statistically significant association with reduc- tions in physical aggression, noncompliance with adult prompts, socialization deficits and communication deficits. An association was also found with improvements in the environ- mental safety of the children” (Institute for Behavioral Change n.d.-b, p. 1).  Behavioral Health

mental safety of the children” (Institute for Behavioral Change n.d.-b, p. 1).  Behavioral Health Rehabilitation (BHR) Ser- vices are not the exact equivalent of wraparound services; nevertheless, their implementation is consistent with the basic philosophy of a wrap- around approach to services. The National Wrap- around Initiative has published a summary of nine controlled studies of wraparound services that had been reported in peer-reviewed journals as of 2010. Their conclusion of this very

services that had been reported in peer-reviewed journals as of 2010. Their conclusion of this very limited universe of research is that “though many of these studies have significant methodological weaknesses, the ‘weight of evidence’ of these studies indicates superior outcomes for youth who receive wraparound compared to similar youth who receive some alternative service” (p. 5).  ### Qualifications of Treatment Providers As identified by Medicaid regulations and implemented by various states,

of Treatment Providers As identified by Medicaid regulations and implemented by various states, the primary treat- ment providers for Behavioral Rehabilitation Ser- vices fall into three categories: *   Behavioral Specialist Consultants (BSC): Behavioral specialist consultants are clinicians with a Master’s or PhD level of education who work with children, family members, and other members of the treatment team to develop the individualized BHR treatment plan. These cli- nicians take overall

treatment team to develop the individualized BHR treatment plan. These cli- nicians take overall responsibility for oversee- ing the development and implementation of the treatment plan. In addition to developing and overseeing the treatment plan, they will work as advisors and mentors to all individuals pro- viding services under the plan, including fam- ily and community members. *   Mobile Therapist: A mobile therapist is a Mas- ter’s or PhD educated therapist who provides child-centered,

A mobile therapist is a Mas- ter’s or PhD educated therapist who provides child-centered, family focused, individual, and family-level psychotherapy. *   Therapeutic Staff Support: A therapeutic staff support (TSS) worker is an individual with a Bachelors’ degree or higher level of education, who provide one-on-one services addressing treatment plan goals. TSS workers are super- vised by Behavioral Specialist Consultants and/or Mobile Therapists.  ### See Also *   ▶Wraparound Services

Behavioral Specialist Consultants and/or Mobile Therapists.  ### See Also *   ▶Wraparound Services  Allegheny HealthChoices, Inc. (2006). Behavioral health rehabilitation services: Brief treatment model. Retrieved from http://www.ahci.org/Reports/QualityFo cusReports/BHRS%20Brief%20Treatment% 20Report.pdf Bruns, E. J., & Suter, J. C. (2010). Summary of the wrap- around evidence base. In E. J. Bruns & J. S. Walker (Eds.), The resource guide to wraparound. Portland: National Wraparound

E. J. Bruns & J. S. Walker (Eds.), The resource guide to wraparound. Portland: National Wraparound Initiative. Bruns, E. J., Walker, J. S., & The National Wraparound Initiative Advisory Group. (2008). Ten principles of the wraparound process. In E. J. Bruns & J. S. Walker (Eds.), The resource guide to wraparound. National Wraparound Initiative: Portland. Centers for Medicare & Medicaid Services. (n.d.). Medic- aid early & periodic screening & diagnostic treatment benefit: Overview. Retrieved

(n.d.). Medic- aid early & periodic screening & diagnostic treatment benefit: Overview. Retrieved from http://www.cms. gov/MedicaidEarlyPeriodicScrn/01_Overview.asp Commonwealth of Pennsylvania Department of Public Welfare. (2009). Health choices behavioral health pro- gram: Program standards and requirements: Primary contractor. Retrieved from http://www.dpw.state.pa. us/ucmprd/groups/public/documents/communication/ s_ 002381.pdf Institute for Behavior Change. (n.d.-a). A one-page over- view of

s_ 002381.pdf Institute for Behavior Change. (n.d.-a). A one-page over- view of Medicaid, EPSDT and BHRS in Pennsylvania and elsewhere. Retrieved from http://www.ibc-pa.org/ A%20one-page%20overview%20of%20Medicaid,% 20EPSDT%20and%20BHRS%20in%20Pennsylvania %20and%20elsewhere%20091009.pdf Institute for Behavior Change. (n.d.-b). Promising treat- ment found for children with inappropriate behavior. Retrieved from http://www.ibc-pa.org/Press% 20Release%20and%20BHRS%20study%20071608. pdf  ##

Retrieved from http://www.ibc-pa.org/Press% 20Release%20and%20BHRS%20study%20071608. pdf  ## Behavioral Momentum Shaunessy Egan Center for Children with Special Needs, Glastonbury, CT, USA  ### Definition Behavioral momentum is derived from classical physics. In behavioral momentum, rate of responding is analogous to velocity and largely determined by the schedule of reinforcement, and the characteristic rate or magnitude of the obtained reinforcement in the situation determines the behavioral

rate or magnitude of the obtained reinforcement in the situation determines the behavioral analogue of mass. The behavior momentum metaphor suggests that the more rein- forcement in a condition correlates with greater resistance to change within that condition. Behavioral momentum describes the relation between resistance to change (persistence of behavior) and the rate of reinforcement obtained in a given situation. Behavioral momentum refers to the tendency for behavior to persist after a

in a given situation. Behavioral momentum refers to the tendency for behavior to persist after a change in environmental circumstances. The greater the rate of the reinforcement is the greater level of the behavioral momentum should be. Behavioral momentum is frequently used as an intervention for noncompliance. Such inter- vention involves issuing a sequence of instruc- tions with which the learner is most likely to comply (i.e., high-probability instructions) immediately prior to issuing a

is most likely to comply (i.e., high-probability instructions) immediately prior to issuing a low-probability instruction.  Dube, W. V., Ahearn, W. H., Lionello-DeNolf, K., & McIlvane, W. J. (2009). Behavioral momentum: Trans- lational research in intellectual and developmental dis- abilities. Behavior Analyst Today, 9, 238–253. Mace, F. C., & Belfiore, P. (1990). Behavioral momentum in the treatment of escape-motivated stereotypy. Jour- nal of Applied Behavior Analysis, 23, 507–514. Mace, F.

of escape-motivated stereotypy. Jour- nal of Applied Behavior Analysis, 23, 507–514. Mace, F. C., Mauro, B. C., Boyajian, A. E., & Eckert, T. L. (1997). Effects of reinforce quality on behavioral momentum: Coordinated applied and basic research. Journal of Applied Behavior Analysis, 30, 1–20. Nevin, J. A. (1992). An integrative model for the study of behavioral momentum. Journal of the Experimental Analysis of Behavior, 57, 301–316. Nevin, J. A. (1996). The momentum of compliance. Jour- nal of

Analysis of Behavior, 57, 301–316. Nevin, J. A. (1996). The momentum of compliance. Jour- nal of Applied Behavior Analysis, 29, 535–547.  ## Behavioral Objective Marina Azimova ABA Services of CT, West Hartford, CT, USA  ### Definition A behavioral objective is a written statement that defines specific action (or pattern of actions) and set of measurements of a target behavior to be expected after an intervention. It contains the fol- lowing necessary components: a description of the expected

an intervention. It contains the fol- lowing necessary components: a description of the expected behavior itself, environmental cir- cumstance(s) in which the behavior is to occur, and the standard criteria of acceptable behavior performance. A behavioral objective is often expressed in the following format: Given a set of conditions or circumstances, an individual will demonstrate the target behavior at performance level deter- mined by rate, frequency, etc. in specified settings or with

behavior at performance level deter- mined by rate, frequency, etc. in specified settings or with specific individuals.  Cooper, J., Heron, T., & Heward, W. (2007). Applied behavior analysis (2nd ed.). Columbus: Merrill/Pren- tice Hall. Yell, M., & Stecker, P. (2003). Developing legally correct and educationally meaningful IEPs using curriculum- based measurements. Assessment for Effective Inter- vention, 28, 73–88.  ## Behavioral Objectives *   ▶Objective  ## Behavioral Skills Training Patricio

28, 73–88.  ## Behavioral Objectives *   ▶Objective  ## Behavioral Skills Training Patricio Erhard1, Terry S. Falcomata1 and Toya Harmon2 1University of Texas at Austin, Austin, TX, USA 2Texas State University, San Marcos, TX, USA  ### Synonyms “Instruction, modelling, rehearsal, and feedback,” BST  ### Definition Behavioural Skills Training (BST) is an evidence- based, multicomponent training method that applies modelling, instruction, rehearsal, and feedback to teach individuals a wide

method that applies modelling, instruction, rehearsal, and feedback to teach individuals a wide variety of behaviors or skills.  ### Historical Background Although there is strong evidence that the use of BST emerged in the late 1960s and early 1970s, it is unclear where the combined use of modelling, instruction, rehearsal, and feedback specifically originated. The main difficulty in finding the ori- gin of BST stems from variations in the use of the BST term and its components in early research.

gin of BST stems from variations in the use of the BST term and its components in early research. For example, O’Connor (1972) taught 33 socially withdrawn children to engage in more social inter- actions through the use of video modelling and social reinforcement. In another study, Braukmann (1974) used instructions, modelling, practice, and feedback to teach adolescents interviewing skills. Despite these inconsistencies, the use of BST involving “modelling, instruction, rehearsal, and

Despite these inconsistencies, the use of BST involving “modelling, instruction, rehearsal, and feedback” was first described within the context of applied behavior analysis (ABA) by Miltenberger (1997) in his conceptual- ization of the teaching strategy in Behavior Mod- ification: Principles and Procedures. In his book, Miltenberger outlined BST as incorporating the following strategies:  1.  Modelling: The target skill is first demon- strated to the student, which can be done in a variety of

The target skill is first demon- strated to the student, which can be done in a variety of ways (e.g., “live” with other people, by video, through cartoons, etc.). For example, when teaching a child to brush his/her teeth, a parent could model grabbing the toothbrush, putting the toothpaste on, brushing his/her teeth, rinsing his/her mouth, and cleaning the toothbrush prior to the child’s brushing attempt. The model is presented first as an example of the behavior(s) that the child is to learn,

attempt. The model is presented first as an example of the behavior(s) that the child is to learn, so that the child can imitate the behaviors displayed. It is important to note that learners must be able to imitate others for this compo- nent of BST to be effective. 2.  Instruction: The child is instructed to complete the behavior modeled in the task, by providing specific instructions regarding the steps needed to complete the behavior, the circumstances in which the behavior should be emitted,

steps needed to complete the behavior, the circumstances in which the behavior should be emitted, and what reinforcers will be provided contingent on engagement in the target behavior. For example, a parent of a child could state, “when it’s bedtime, you must brush the top, bottom, inside, and outside of your teeth. If you do so, you will have clean healthy teeth.” The instruction should incorporate language that will be easily understood by the child, and the instruction should be used in

language that will be easily understood by the child, and the instruction should be used in combination with the modelling to ensure acquisition of the behavior(s). 3.  Rehearsal: The child performs the behavior(s) that were instructed and/or modeled. For instance, the parent who first modeled and instructed the child to brush their teeth would then next observe the child complete a rehearsal of the behavior(s). The purposes of the rehearsal are (a) so the parent can confirm the acquisition of

the behavior(s). The purposes of the rehearsal are (a) so the parent can confirm the acquisition of the behavior(s), (b) whether the behavior(s) are completed incorrectly, and (c) contrive an opportunity to correct mistakes and reinforce correct responding. 4.  Feedback: Immediately after the rehearsal occurs, the student is typically provided with feedback. Feedback always includes praise, and/or other reinforcers, whether the rehearsal was correct or not. In other words, if the stu- dent did

other reinforcers, whether the rehearsal was correct or not. In other words, if the stu- dent did not rehearse the skill correctly, praise for attempting the rehearsal is typically pro- vided. If the child in the example forgot to clean his toothbrush before putting it away, the parent could say, “Good job brushing your teeth with the toothpaste! Also, don’t forget to clean the toothbrush after your done. If you don’t it could grow bacteria and make you sick.” After praise has been provided,

your done. If you don’t it could grow bacteria and make you sick.” After praise has been provided, the parent uses descriptive language to identify correct and incorrect behaviors, avoiding the use of terms such as “bad” or “wrong.” Instead, feedback emphasizes the reason why a behav- ior was correct/incorrect, how it can be changed, and the reasoning for the form of the behavior.  The first empirical evidence of BST as a train- ing tool for helping people with autism spectrum disorders (ASD)

evidence of BST as a train- ing tool for helping people with autism spectrum disorders (ASD) and their caregivers/staff was published in 2004 in a study that used BST to teach Discrete Trial Teaching (DTT) to three teachers of a student with ASD (i.e., Sarokoff & Sturmey, 2004). Since then, BST has become an increasingly popular method for training people with ASD, ASD caregivers, and ASD staff in the field of ABA. Considering that people with ASD often experience difficulties acquiring skills

in the field of ABA. Considering that people with ASD often experience difficulties acquiring skills and communicating with others, which may ulti- mately result in a greater risk of engaging in property destruction, aggression, and self- injurious behaviors without proper, evidence- based treatment (McClintock et al. 2003; Lang et al., 2019; Gormley, Healy, Doherty, O’Regan, & Grey, 2019), the application of training methods, such as BST, is paramount for creating consistent teaching

the application of training methods, such as BST, is paramount for creating consistent teaching opportunities for people with ASD and to sustain quality of care for caregivers and direct care staff.  ### Current Knowledge As BST is an evidence-based intervention, current applications of the method have been implemented to address a variety of behavioral and skill acquisition targets. Studies have demon- strated the utility of BST to teach academic, voca- tional, and leisure skills to

have demon- strated the utility of BST to teach academic, voca- tional, and leisure skills to individuals with ASD.  For example, Singh et al. (2017) used BST to effectively increase performance in four different comprehension-fostering areas (i.e., prediction, questioning, summarizing, and clarifying) for a child with ASD. The BST model was implemented for each skill area using explicit instruction, modelling, rehearsal, and feedback using praise or error correction. The results of the study

modelling, rehearsal, and feedback using praise or error correction. The results of the study by Singh et al. showed that BST was effective for teaching the fostering skills and improving overall reading comprehension scores (i.e., performance increased from an average of 40% to an average of 71% during intervention and 80% during follow-up).  In addition to increasing academic skills, BST has been shown to be effec- tive at teaching vocational skills to individuals with ASD. Morgan and Wine

been shown to be effec- tive at teaching vocational skills to individuals with ASD. Morgan and Wine (2018) used a mul- tiple baseline design to evaluate the effects of BST to teach work skills in a restaurant to an 18-year- old with ASD. Instructions regarding each step of a work task were read to the individual followed by modelling of the target skills. The individual was then given the opportunity to rehearse each step of the task and was provided with oral feed- back for correct and

opportunity to rehearse each step of the task and was provided with oral feed- back for correct and incorrect steps. Feedback was delivered immediately following each step with specific praise for correct performance of the step or corrective feedback for steps performed incor- rectly. Results of the study showed that the indi- vidual was able to increase performance for all four work skills (i.e., when rolling silverware, performance increased from 0% to 100% and 100% during maintenance and

when rolling silverware, performance increased from 0% to 100% and 100% during maintenance and generalization pro- bes in a novel environment).  BST has also been used to teach leisure skills to people with ASD. For example, Thomas et al. (2016) taught five skateboarding skills to a child with ASD through the use of instructions, modelling the target skill, rehearsal, and feedback. In addition to the instruc- tional component, the researcher reviewed the performance of the skill with the child

the instruc- tional component, the researcher reviewed the performance of the skill with the child by showing him his performance, describing the data sheet, and giving positive feedback for performing steps correctly and corrective feedback for steps that were performed incorrectly. Following the instructions component, the researcher continued implementing the remaining components of BST (modelling, rehearsal, and feedback) for all five skills. The participant was able to acquire four out of

rehearsal, and feedback) for all five skills. The participant was able to acquire four out of five skills within two to nine training sessions. Post training, generalization, and novel skateboarding skills were also assessed, demon- strated, and maintained in a novel setting.  BST has also been demonstrated to be effective for teaching caregivers and staff to implement behavior analytic strategies with learners with ASD. This type of application of BST has allowed researchers to examine the

with learners with ASD. This type of application of BST has allowed researchers to examine the effectiveness of both BST to teach a skill as well as the acquisition of the skill by the learner. Researchers have implemented BST with a variety of ASD direct care staff, including but not limited to special education teachers, dentists, and adult behavior technicians with an ASD.  For example, Kirkpatrick, Akers, and Rivera (2019) conducted a systematic review of BST literature and found numerous

Akers, and Rivera (2019) conducted a systematic review of BST literature and found numerous studies that supported BST as a method for training special education teachers to use DTT and preference assessments in the classroom. Graudins et al. (2012) used modelling, instruc- tion, rehearsal, and feedback to train oral care providers to apply basic and effective ABA strat- egies such as reinforcement or visual supports during routine dental care visits. After BST was implemented, three oral care

or visual supports during routine dental care visits. After BST was implemented, three oral care providers accurately performed the ABA-based techniques while conducting oral exams and dental cleaning with children with ASD. Lerman et al. (2013) used BST to teach four adults with autism to perform discrete trial training (DTT) to a child with ASD. Following the BST-based training, three of four adult behavior technicians with ASD demon- strated an increase in correct responding for implementing

behavior technicians with ASD demon- strated an increase in correct responding for implementing DTT with children with ASD.  Traditionally, applications of BST are com- prised of the four key components as described by Miltenberger (1997) including modelling, instruc- tion, rehearsal, and feedback. However, research has demonstrated that some variations of this model can be implemented to effectively teach skills. Instructions can be given orally and/or writ- ten; modelling can be performed by

teach skills. Instructions can be given orally and/or writ- ten; modelling can be performed by the experi- menter or via video modelling; rehearsal can be performed by the participant or by role-playing with the experimenter; feedback can be provided immediately during rehearsals or after completion of the entire response; and training can occur in a simulated environment or in situ (i.e., in the envi- ronment the behavior is ultimately intended to occur). Unlike traditional BST that evaluates

envi- ronment the behavior is ultimately intended to occur). Unlike traditional BST that evaluates mas- tery of a target skill in simulated environments, training in situ allows for evaluation of the skills in the environment within which the behavior is most likely occur. Subsequently, in situ training can increase the likelihood that a skill will occur in additional novel, non-training situations and set- tings. In situ training has been utilized and demon- strated primarily in BST research

and set- tings. In situ training has been utilized and demon- strated primarily in BST research aimed at teaching safety skills to children with ASD; but it has also been demonstrated to promote learning of other skills. For instance, Gunby and Rapp (2014) taught abduction-prevention skills to three children with ASD using BST and in situ feedback. Specifically, the experimenters taught the children how to respond to different abduction lures. In situ feed- back was provided immediately

children how to respond to different abduction lures. In situ feed- back was provided immediately following incor- rect responses. For all three participants, abduction prevention skills taught using BST improved and maintained during training and follow-up when novel abduction lures were presented.  Within the BST model, the evaluation of how skills are measured has varied across researchers. Some researchers have measured performance by the percentage of correct opportunities, while others

Some researchers have measured performance by the percentage of correct opportunities, while others have used rating scales. For example, Singh et al. (2017) and Lerman et al. (2013) eval- uated performance by calculating the percentage of correct responses. Alternatively, Gunby and Rapp (2014) and Houvouras and Harvey (2014) created rating scales and designated a score value for a specific behavior or set of behaviors (i.e., Likert scale). Specifically, Houvouras and Harvey evaluated BST to

or set of behaviors (i.e., Likert scale). Specifically, Houvouras and Harvey evaluated BST to teach three boys with ASD fire safety skills (i.e., how to respond in the presence of a lighter). To assess performance, the researchers created a 4-point Likert scale in which each value specified the quality in which the step or steps were performed by the partici- pants. The results showed that the participants were able to increase their scores (i.e., from a range of 0–1 on the Likert scale to a range

were able to increase their scores (i.e., from a range of 0–1 on the Likert scale to a range of 2–3; with scores of 3 during maintenance probes) following BST using the four key components of BST.  Variations of BST demonstrate how the train- ing method can be individualized to best teach a target skill while also maintaining the components that make up the BST training method. However, because BST is a multicomponent package, one or more of its components may, at times, be solely responsible

BST is a multicomponent package, one or more of its components may, at times, be solely responsible for increasing and improving target skills. Through the use of component analyses (i.e., analyses that systematically evaluate the effects of individual components that comprise intervention packages to determine the compo- nent or components responsible for positive effects), researchers and clinicians can identify the BST components necessary to bring about skill acquisition based on learner

can identify the BST components necessary to bring about skill acquisition based on learner needs and the behavior of interest. At the time of this publica- tion, research has shown inconsistent results determining which component or combination of component(s) are necessary. For example, some studies have identified feedback and modelling as necessary components (e.g., Ward & Sturmey, 2012), whereas others have indicated that instruc- tions and modelling are necessary to the effective- ness of

others have indicated that instruc- tions and modelling are necessary to the effective- ness of BST (e.g., Kornack et al. 2013; Driftke et al. 2017). Findings across numerous studies, however, have been consistent in showing that the use of only one or two components of BST seldom increases skill acquisition to mastery levels. Thus, the use of BST as a full package has been shown to be the most effective way of teaching skills to mastery levels and maintaining performance across time.  ###

effective way of teaching skills to mastery levels and maintaining performance across time.  ### Future Directions The use of BST with people with ASD, their caregivers, and direct care staff is well documented and substantially supported by research. BST can be used in a variety of ways to increase and shape the form of behaviors in a reliable manner. To illustrate, we provided exam- ples of how BSTcan be used to teach learners with ASD to communicate, engage in social interac- tions, increase

BSTcan be used to teach learners with ASD to communicate, engage in social interac- tions, increase their reading comprehension, and even teach someone with ASD to skateboard. It is likely that BST is an effective and increasingly popular training method because of its versatility.  Specifically, it can be used to teach virtually any behavior, or chain of behaviors, as it can be adapted and used with other resources (e.g., videos, manuals) to provide individualized train- ing for learners.

with other resources (e.g., videos, manuals) to provide individualized train- ing for learners. Despite the robust support in the literature for BST methods, continued examina- tion of BST and its components with various populations, target skills, and with more variation has been suggested by researchers.  A consistent topic brought up by current BST researchers is the need for closing the “research- to-practice gap” (i.e., the inconsistent application of relevant and current research in

“research- to-practice gap” (i.e., the inconsistent application of relevant and current research in locations/envi- ronments where they are most needed). For exam- ple, Gormley et al. (2019) noted that although most training of other professionals involved some level of individualization, BST has not been employed despite the evidence supporting BST as a reliable method that can be individual- ized to train specific behaviors or set of behaviors. Kirkpatrick, Akers, and Rivera (2019), in a sys-

to train specific behaviors or set of behaviors. Kirkpatrick, Akers, and Rivera (2019), in a sys- tematic review of the literature, noted that BST tends to be used with special education teachers, but not with general education teachers. Further, a review by van der Meer et al. (2017) that exam- ined 22 studies in which training was provided to direct care staff on the implementation of commu- nication interventions found that although all the reviewed interventions indicated positive out- comes

interventions found that although all the reviewed interventions indicated positive out- comes for the staff and the individuals with intel- lectual disabilities, only one study utilized all BST components in its teaching package. Rather, the review indicated that direct care staff were trained with various methods such as presentations, didactic instructions, group discussions, role- play, and structured practice with feedback. In addition to the research-to-practice gap, there is a notable

structured practice with feedback. In addition to the research-to-practice gap, there is a notable gap between the use of BST between clinicians and non-clinic service providers. For example, Graudins et al. (2012) indicated that BST was useful in teaching oral care providers how to use ABA-based techniques. Although the results of Graudens et al. demonstrated effective- ness, there is a paucity of research related to the use of BST in this capacity. The same type of approach used by Gaudins et

research related to the use of BST in this capacity. The same type of approach used by Gaudins et al. could be done with other community-based individuals such as firemen, policemen, hairdressers, and other professionals to facilitate interactions between individuals with ASD and professionals in service industries. Given the consistent identification by literature reviews regarding the research-to- practice gap, future studies should try to expand the knowledge base regarding BST with individ-

practice gap, future studies should try to expand the knowledge base regarding BST with individ- uals outside the field of ABA.  In addition to closing the research-to-practice gap, there is a need to identify the necessary training components within BST and the effec- tiveness of BST relative to other teaching meth- odologies. Some studies have indicated that modelling and feedback are the most important components of BST (e.g., Ward & Sturmey, 2012), while others have indicated that instruc-

important components of BST (e.g., Ward & Sturmey, 2012), while others have indicated that instruc- tions and modelling are more important (e.g., Driftke et al. 2017); other studies have suggested that necessary components are idiosyncratic to each learner (e.g., Kornack et al. 2013). It is important to note that previous BST component analysis-based studies have targeted different skills and behaviors. Thus, caution is needed in terms of inferring external validity with regard to these

and behaviors. Thus, caution is needed in terms of inferring external validity with regard to these studies. In other words, behaviors or skills that were taught in respective component analysis-based studies varied across studies, pos- sibly contributing to the varying results. Accord- ingly, it is important that researchers continue to replicate and extend component analysis-based research regarding BST to continue to evaluate and document the circumstances in which some or all components are

BST to continue to evaluate and document the circumstances in which some or all components are necessary to produce positive outcomes. Similarly, more comparative analysis- based research is needed to evaluate the effective- ness of BST and other training strategies. Leaf et al. (2015) conducted a review of studies that compared BST to another prominent ABA- based teaching strategy, the Teaching Interaction Procedure (TIP). The authors concluded that even though both interventions were

Interaction Procedure (TIP). The authors concluded that even though both interventions were effective at teach- ing a behavior or skill, none of the studies reviewed provided quantitative measurements that compared one to the other. Future studies could focus on comparing the effectiveness of BST and TIP by measuring trials to criterion, overall training time, and/or other dimensions to determine the most efficient strategy. Leaf et al. also noted that multiple studies have used the components

the most efficient strategy. Leaf et al. also noted that multiple studies have used the components of BST and mislabelled them as TIP and vice versa. It is likely that these misidentifi- cations are due to lack of training with multiple teaching methodologies. Considering the acknowledged presence of a research-to-practice gap, future efforts of researchers should focus on educating professionals on various types of teach- ing strategies and their respective components.  ### See Also *   ▶Applied

various types of teach- ing strategies and their respective components.  ### See Also *   ▶Applied Behavior Analysis (ABA) *   ▶Imitation *   ▶Modeling  Braukmann, C. J., Fixsen, D. L., Phillips, E. L., Wolf, M. M., & Maloney, D. M. (1974). An analysis of a selection interview training package for predeunquents at achievement place. Criminal Justice and Behavior, 1, 30–42. https://doi.org/10.1177/009385487400100105. Driftke, M. A., Tiger, J. H., & Wierzba, B. C. (2017). Using behavioral skills

Driftke, M. A., Tiger, J. H., & Wierzba, B. C. (2017). Using behavioral skills training to teach parents to implement three-step prompting: A component analysis and gen- eralization assessment. Learning and Motivation, 57, 1–14. https://doi.org/10.1016%2Fj.lmot.2016.12.001. Gormley, L., Healy, O., Doherty, A., O’Regan, D., & Grey, I. (2019). Staff training in intellectual and developmen- tal disability settings: A scoping review. Journal of Developmental and Physical Disabilities, 1–26.

disability settings: A scoping review. Journal of Developmental and Physical Disabilities, 1–26. https://doi.org/10.1007/s10882-019-09683-3. Graudins, M. M., Rehfeldt, R. A., DeMattei, R., Baker, J. C., & Scaglia, F. (2012). Exploring the efficacy of behavioral skills training to teach basic behavior ana- lytic techniques to oral care providers. Research in Autism Spectrum Disorders, 6, 978–987. https://doi. org/10.1016/j.rasd.2011.12.010. Gunby, K. V., & Rapp, J. T. (2014). The use of

https://doi. org/10.1016/j.rasd.2011.12.010. Gunby, K. V., & Rapp, J. T. (2014). The use of behavioral skills training and in situ feedback to protect children with autism from abduction lures. Journal of Applied Behavior Analysis, 47, 856–860. https://doi.org/10. 1002/jaba.173. Houvouras, A. J., & Harvey, M. T. (2014). Establishing fire safety skills using behavioral skills training. Journal of Applied Behavior Analysis, 47, 420–424. https://doi. org/10.1002/jaba.113. Kirkpatrick, M., Akers,

Applied Behavior Analysis, 47, 420–424. https://doi. org/10.1002/jaba.113. Kirkpatrick, M., Akers, J., & Rivera, G. (2019). Use of behavioral skills training with teachers: A systematic review. Journal of Behavioral Education, 1–18. https:// doi.org/10.1007/s10864-019-09322-z. Kornack, L. T., Ringdahl, J. E., Sjostrom, A., & Neurnberger, J. E. (2013). A component analysis of a behavioral skills training package used to teach conver- sation skills to young adults with autism spectrum and other

training package used to teach conver- sation skills to young adults with autism spectrum and other developmental disorders. Research in Autism Spectrum Disorders, 7, 1370–1376. https://doi.org/10. 1016/j.rasd.2013.07.012. Lang, R., Davis, T., Ledbetter-Cho, K., McLay, L., Erhard, P., & Wicker, M. (2019). Psychological and educational approaches to the treatment of aggression and tantrums in people with intellectual disability. In J. L. Matson (Ed.), Handbook of intellectual disabilities:

people with intellectual disability. In J. L. Matson (Ed.), Handbook of intellectual disabilities: Integrating theory, research and practice. New York: Springer. Leaf, J. B., Townley-Cochran, D., Taubman, M., Cihon, J. H., Oppenheim-Leaf, M. L., Kassardjian, A., et al. (2015). The teaching interaction procedure and behav- ioral skills training for individuals diagnosed with autism spectrum disorder: A review and commentary. Review Journal of Autism and Developmental Disor- ders, 2, 402–413.

A review and commentary. Review Journal of Autism and Developmental Disor- ders, 2, 402–413. https://doi.org/10.1007/s40489-015- 0060-y. Lerman, D. C., Hawkins, L., Hoffman, R., & Caccavale, M. (2013). Training adults with an autism spectrum disorder to conduct discrete-trial training for young children with autism: A pilot study. Journal of Applied Behavior Analysis, 46, 465–478. https://doi.org/10. 1002/jaba.50. McClintock, K., Hall, S., & Oliver, C. (2003). Risk markers associated with

1002/jaba.50. McClintock, K., Hall, S., & Oliver, C. (2003). Risk markers associated with challenging behaviours in people with intellectual disabilities: A meta-analytic study. Journal of Intellectual Disability Research, 476, 405–416. https://doi.org/10.1046/j.1365-2788.2003.00517.x. Miltenberger, R. G. (1997). Behavior modification: Prin- ciples and procedures. Belmont: Thomson Brooks/ Cole Publishing Company. Morgan, C. A., & Wine, B. (2018). Evaluation of behavior skills training for

Publishing Company. Morgan, C. A., & Wine, B. (2018). Evaluation of behavior skills training for teaching work skills to a student with autism spectrum disorder. Education and Treatment of Children, 41, 223–232. https://doi.org/10.1353/etc. 2018.0009. O’Connor, R. D. (1972). Relative efficacy of modeling, shaping, and the combined procedures for medication of social withdrawal. Journal of Abnormal Psychology, 79, 327–334. Sarokoff, R. A., & Sturmey, P. (2004). The effects of behavioral skills

Psychology, 79, 327–334. Sarokoff, R. A., & Sturmey, P. (2004). The effects of behavioral skills training on staff implementation of discrete-trial teaching. Journal of Applied Behavior Analysis, 37, 535–538. https://doi.org/10.1901/jaba. 2004.37-535. Singh, B., Moore, D., Furlonger, B., Anderson, A., Busacca, M., & English, D. (2017). Teaching reading comprehension skills to a child with autism using behaviour skills training. Journal of Autism and Devel- opmental Disorders, 47, 3049–3958.

using behaviour skills training. Journal of Autism and Devel- opmental Disorders, 47, 3049–3958. https://doi.org/ 10.1007/s10803-017-3229-7. Thomas, B., Lafasakis, M., & Spector, V. (2016). Brief report: Using behavioral skills training to teach skateboarding skills to a child with autism spectrum disorders. Journal of Autism and Developmental Dis- orders, 46, 3824–3829. https://doi.org/10.1007/ s10803-016-2900-8. van der Meer, L., Matthews, T., Ogilvie, E., Berry, A., Waddington, H., Balandin,

van der Meer, L., Matthews, T., Ogilvie, E., Berry, A., Waddington, H., Balandin, S., & Sigafoos, J. (2017). Training direct-care staff to provide communication intervention to adults with intellectual disability: A systematic review. American Journal of Speech- Language Pathology, 26, 1279–1295. https://doi.org/ 10.1044/2017_AJSLP-16-0125. Ward, H. J., & Sturmey, P. (2012). Component analysis of behavior skills training in functional analysis. Behav- ioral Interventions, 272, 75–92.

of behavior skills training in functional analysis. Behav- ioral Interventions, 272, 75–92. https://doi.org/10. 1002/bin.1339.  ## Behavioral Specialist *   ▶Behavior Analysis  ## Behaviorally Based Social Skill Groups Justin B. Leaf, Joseph H. Cihon and Julia L. Ferguson Autism Partnership Foundation, Seal Beach, CA, USA  ### Definition Today one of the most commonly implemented and endorsed interventions are procedures based upon the principles of applied behavior analysis (ABA; Smith 2012).

are procedures based upon the principles of applied behavior analysis (ABA; Smith 2012). Although, behaviorally based interventions are commonly implemented in a one-to-one instructional format, research has shown that these interventions can be efficacious within a group instructional format (e.g., Dotson et al. 2010). One form of behaviorally based intervention is the implementation of behavior- ally based social skills groups. Reichow and Volkmar (2010) categorize social skills groups as

ally based social skills groups. Reichow and Volkmar (2010) categorize social skills groups as “groups contained two or more like-aged individuals (with and/or without disabilities) meeting in a group instructional format. . .” (p. 152). For an intervention to be considered a behaviorally based social skills group, the inter- ventionists must implement only behavior analytic procedures (e.g., behavioral skills train- ing, discrete trial teaching, incidental teaching, or the teaching interaction

skills train- ing, discrete trial teaching, incidental teaching, or the teaching interaction procedure) and must only implement procedures that are evidence based, empirically based, and not pseudoscien- tific or antiscientific.  ### Historical Background There has been a long history of the implemen- tation of behaviorally based social skills groups for individuals diagnosed with autism spectrum disorder (ASD). Some of the early work took place at the UCLA Young Autism Project, where techniques

(ASD). Some of the early work took place at the UCLA Young Autism Project, where techniques such as discrete trial teaching occurred in one-to-one instructional formats and group instructional formats (Lovaas 1987; Smith and Lovaas 1998). Since the early days of behaviorally based social skills groups implemented in a clinic-based setting, there have been numerous single-subject and group design studies that have shown the effectiveness of social skills groups (see Williams White et al. (2007)

studies that have shown the effectiveness of social skills groups (see Williams White et al. (2007) and Reichow and Volkmar (2010) for a more complete review). One of the major mile- stones in the terms of the empirical research was researchers evaluating social skills groups with randomized group designs, most notably with the evaluation of the UCLA PEERS program (Laugeson et al. 2009). The authors and devel- opers of this model demonstrated that a manualized approach to a social skills group,

and devel- opers of this model demonstrated that a manualized approach to a social skills group, with parental support, can be effective in improving the lives of adolescents diagnosed with ASD. More recently, Leaf et al. (2017) used a randomized control trial to demonstrate the effectiveness of a behaviorally based social skills group for young children diagnosed with ASD. The results indicated that behaviorally based social skills groups can yield significant improvements to the social

that behaviorally based social skills groups can yield significant improvements to the social behavior of young individuals diagnosed with ASD. The results also demonstrated that a model in which inter- ventionists are permitted to make in-the-moment decisions without a strict protocol (i.e., a pro- gressive model of ABA) can be effective within a behaviorally based social skills group.  ### Rationale or Underlying Theory Behaviorally based social skills groups are deeply rooted in the

### Rationale or Underlying Theory Behaviorally based social skills groups are deeply rooted in the philosophy of behavior analysis. Within this philosophy, behavior is the result of the individual’s interaction with his or her environment. More specifically, the probability of a response, or response class, occurring is increased when it is followed by a reinforcing event, and decreased when followed by a punishing event. In addition to the manip- ulation of reinforcing or punishing events,

by a punishing event. In addition to the manip- ulation of reinforcing or punishing events, inter- ventionists manipulate the potency of these events (e.g., establishing and abolishing opera- tions), find effective ways to increase the likeli- hood of the student(s) responding correctly (e.g., prompting and prompt fading), and transfer learned behaviors with the interventionist, or within the context of the social skills group, to the individual’s natural environment. Finally, interventionists

of the social skills group, to the individual’s natural environment. Finally, interventionists make decisions based upon objective data as opposed to anecdotal or sub- jective evidence.  ### Goals and Objectives The overall purpose of behaviorally based social skills groups is to improve specific social behav- iors (e.g., joint attention, greetings, and sharing) as well as more global social behaviors (e.g., pragmatics, social learning, and social relatedness) for individuals diagnosed with ASD,

(e.g., pragmatics, social learning, and social relatedness) for individuals diagnosed with ASD, with the ultimate goal of improving pro- social relationships and developing meaningful friendships for the individuals receiving inter- vention. Interventionists should target the improvement of a variety of social behaviors when implementing social skills groups. Some of the skills that can be taught are social commu- nication, social interaction, social awareness, social learning, and social

are social commu- nication, social interaction, social awareness, social learning, and social relatedness (Taubman et al. 2011). When interventionists teach social communication skills (e.g., changing the game when bored or providing compliments), the goal is to teach the student how to use and understand the social aspects of communication. When inter- ventionists teach social interaction skills (e.g., joining into a game or sportsmanship), the goal is to teach the student skills that will

(e.g., joining into a game or sportsmanship), the goal is to teach the student skills that will help pro- mote successful interactions with the student’s peers. When interventionists teach social aware- ness skills (e.g., relationship identification or theory of mind), the goal is to teach the student how to pick up on social cues and discriminate between different social cues. When interven- tionists teach social learning skills (e.g., obser- vational learning or vicarious learning), the goal

teach social learning skills (e.g., obser- vational learning or vicarious learning), the goal is to teach the student how to learn from their environment without direct instruction. When interventionists teach social relatedness skills (e.g., tolerating peers or accepting peers), the goal is to teach the student how to have mean- ingful connections with his or her peers. All of these skills can be taught within the context of a behaviorally based social skills group and can improve the quality

taught within the context of a behaviorally based social skills group and can improve the quality of life for individuals diag- nosed with ASD. Additionally, within the con- text of behaviorally based social skills groups, the interventionists might also focus on teaching language, learning how to learn skills, self-help skills, and decreasing any aberrant or interfering behavior(s).  ### Treatment Participants Although there is an underlying assumption that behaviorally based social skills

Participants Although there is an underlying assumption that behaviorally based social skills groups are only effective for higher functioning and older individuals diagnosed with ASD, they can be successfully implemented with a wide age range of individuals across several demographics. Although behaviorally based social skills groups can be implemented with a heterogeneous group of participants, our research and clinical experi- ence has shown that behaviorally based social skills groups are

our research and clinical experi- ence has shown that behaviorally based social skills groups are more effective for the partici- pants and easier for interventionists if the groups are homogenous (Dotson et al. 2010; Leaf et al. 2017). Thus, interventionists should attempt to include participants in the group around the same chronological age (i.e., not developmental age), that display the same deficits in social behavior, have the same level of language, and display the same level of aberrant

deficits in social behavior, have the same level of language, and display the same level of aberrant behavior. Ideally, students should display minimal amounts of aberrant behavior prior to entering a social skills group, especially, if this behavior is harmful to the indi- vidual (i.e., self-injurious) or may be harmful to peers (i.e., aggression). Additionally, if a partic- ipant displays high rates of stereotypic behavior, that participant might not be the best fit for a social skills group as

of stereotypic behavior, that participant might not be the best fit for a social skills group as stereotypic behavior may interfere with the learning process (Cunningham and Schreibman 2008). Finally, if the interven- tionists have not identified and/or conditioned effective reinforcers, they should not start the participant in a behaviorally based social skills group, as the interventionists will not be able to effectively reinforce appropriate social behavior.  ### Treatment Procedures What

not be able to effectively reinforce appropriate social behavior.  ### Treatment Procedures What distinguishes behaviorally based social skills groups compared to other social skills groups implemented for individuals diagnosed with ASD is that the interventionists only imple- ment procedures based upon the principles of ABA, using only evidenced-based and empiri- cally supported procedures, with the goal to improve observable and measurable behavior. As such, interventionists do not utilize

the goal to improve observable and measurable behavior. As such, interventionists do not utilize mentalistic interpretations to target social behavior, refrain from utilizing an eclectic approach, and refrain from implementing pseudoscientific procedures. Within a behaviorally based social skills group, the goal of the interventionists should be to min- imize downtime of the learner and to maximize teaching opportunities. This can be accomplished by either following strict protocols (Laugeson et

teaching opportunities. This can be accomplished by either following strict protocols (Laugeson et al. 2009) or using in-the-moment decision- making informed by clinical judgment (Leaf et al. 2017). Overall, behaviorally based social skills groups should be implemented at least once a week, but it is highly recommended to implement more frequently. It is also recommended that each behaviorally based social skills group run for at least 2 h in duration. A final overall component is that parent

based social skills group run for at least 2 h in duration. A final overall component is that parent involvement should occur at some level, ranging from parents observing sessions (Leaf et al. 2017) to being directly involved in the intervention (Laugeson et al. 2009).  Within the context of a behaviorally based social skills group, there are several different pro- cedures that can be implemented, all of which have empirical support and have been implemented in one-to-one instructional formats.

all of which have empirical support and have been implemented in one-to-one instructional formats. One procedure that can be implemented in a behaviorally based social skills group is group discrete trial teaching (e.g., Taubman et al. 2001). Within this procedure, the interventionist provides an instruction to a learner(s), allows time to respond, and provides either reinforcement for correct responding or corrective feedback for incorrect responding. The interventionists could provide

responding or corrective feedback for incorrect responding. The interventionists could provide discrete trials sequentially where one stu- dent responds at a time or chorally where all students respond together.  Another procedure that can be implemented in the context of a behaviorally based social skills group is video modeling (Wang and Koyama 2014). Within video modeling, the interventionists would show a video of either an adult, a peer, or the participants themselves engaging in a

would show a video of either an adult, a peer, or the participants themselves engaging in a targeted social behavior. After the video has been watched by the learners, the learners have the opportunity to practice the targeted social behavior(s). Another approach that can be used within behaviorally based social skills groups is incidental teaching (Hart and Risley 1975). In incidental teaching, the inter- ventionists arrange opportunities for the learner to engage in the behavior, follow the

the inter- ventionists arrange opportunities for the learner to engage in the behavior, follow the learners lead, and when they engage in the target social behavior, the interventionist can provide pro- mpting, error correction, and/or reinforcement. Interventionists can also embed instructions into the context of games. When interventionists do this, they create opportunities in which the leaners can respond to multiple simultaneous implicit instructions that occur within the con- text of the

can respond to multiple simultaneous implicit instructions that occur within the con- text of the game/activity.  Interventionists can also implement a social discrimination program called the Cool versus Not Cool (CNC; e.g., Leaf et al. 2016) procedure. The CNC procedure consists of the teacher modeling a targeted social behavior correctly (i.e., “Cool”) and incorrectly (i.e., “Not Cool”). **Behaviorally Based Social Skill Groups**  After the demonstration, the learners have an opportunity to

Based Social Skill Groups**  After the demonstration, the learners have an opportunity to state, or label, if the model was “cool” or “not cool” and why the demonstration was “cool” or “not cool.” After the learner labels the social behavior, the learners have an opportunity to role-play the targeted behavior the cool way. A similar procedure that can be implemented in the context of behaviorally based social skills group is the teaching interaction procedure (TIP; Leaf et al. 2015). The TIP is

based social skills group is the teaching interaction procedure (TIP; Leaf et al. 2015). The TIP is a multicomponent teaching procedure which consists of the interventionist describing the targeted social behavior, providing cues and characteristics of when to engage in the desired social behavior, providing a meaningful rationale of why the learner should engage in the targeted social behavior, breaking the social behavior into smaller components (i.e., task analysis), modeling the targeted

breaking the social behavior into smaller components (i.e., task analysis), modeling the targeted social behavior the cool and not cool way, providing the opportunity for the learners to role-play the behavior, and providing differential consequences throughout. Along with these procedures, interventionists could also implement script fading (e.g., Pollard et al. 2012), behavioral skills training (e.g., Miltenberger et al. 2009), and peer-mediated interventions (e.g., Odom et al. 1985) in the

(e.g., Miltenberger et al. 2009), and peer-mediated interventions (e.g., Odom et al. 1985) in the context of behaviorally based social skills groups.

**Efficacy Information**  Through the use of single-subject designs and group designs, researchers have shown that the implementation of behaviorally based social skill groups can be an effective way to improve social behavior for individuals diagnosed with ASD (e.g., Dotson et al. 2010; Leaf et al. 2017). Researchers have evaluated specific interven-tions (described previously) and have shown that these interventions can lead to learners with ASD learning and engaging in social behaviors such

these interventions can lead to learners with ASD learning and engaging in social behaviors such as joint attention, game play, and improved social language (see Williams White et al. (2007) and Reichow and Volkmar (2010) for a more complete review). Researchers have also evalu-ated the overall effects of behaviorally based social skills groups on improving the overall social behavior of individuals diagnosed with ASD (e.g., Laugeson et al. 2009; Leaf et al. 2017). In these studies, the results

diagnosed with ASD (e.g., Laugeson et al. 2009; Leaf et al. 2017). In these studies, the results have shown that individuals who receive intervention within behaviorally based social skill groups demon-strate an overall improvement in social behavior as compared to individuals who did not receive intervention within a behaviorally based social skill groups. Furthermore, the results of these group design studies have indicated that the indi-viduals who did receive behaviorally based social skill

design studies have indicated that the indi-viduals who did receive behaviorally based social skill groups maintained the improvements in social behavior overtime and that these social behaviors generalized to other settings (Leaf et al. 2017).

**Outcome Measurement**  When measuring improvements in social behav-ior, it is important to evaluate observable behav-iors as opposed to what the learners say they should be doing, or evaluating mentalistic inter-pretations of behavior. Researchers should use a combination of measures to evaluate improve-ments in specific social behaviors (e.g., joint attention, sharing, social communication) and overall social improvement (e.g., overall quality of play, overall social interaction, and

and overall social improvement (e.g., overall quality of play, overall social interaction, and friendship development). When evaluating improvements on specific social behaviors, the researchers should conduct naturalistic and generalization probes. When implementing naturalistic and generalization probes, the researchers set up an opportunity for the learner(s) to display the targeted social behavior without providing any additional consequences (i.e., consequences other than those occurring

without providing any additional consequences (i.e., consequences other than those occurring naturally) or pro-mpting. For example, if the targeted social behavior is losing graciously, the researcher would set up a game (e.g., the card game war) between a peer/adult and the learner(s) and see how the learner(s) respond when he or she loses the game. Naturalistic probes would be conducted within the context of the social skills group, while generalization probes would be conducted in the

the context of the social skills group, while generalization probes would be conducted in the learner(s) natural environment (e.g., home, school, community). Both naturalistic and generalization probes should be evaluated in conjunction with scoring on standardized assessments. There are numer-ous assessments which could be used when eval-uating the overall social behavior of individuals diagnosed with ASD these include: the Vineland Adaptive Behavior Scales, the Social Skills Improvement

with ASD these include: the Vineland Adaptive Behavior Scales, the Social Skills Improvement System, Social Responsiveness Scale, The Walker-McConnell Scale of Social Competence and School Adjustment, the Friend-ship Qualities Scale, and the Aberrant Behavior Checklist. Within the research, there have been multiple evaluators who have scored these vari-ous assessments. The multiple evaluators have included parents, social skills group teachers, outside teachers, and blind evaluators (e.g., Leaf

included parents, social skills group teachers, outside teachers, and blind evaluators (e.g., Leaf et al. 2017). Within clinical practice and research studies, it is encouraged that multiple people evaluate the participants across these var-ious assessments. It is also encouraged that one of evaluators be blind to the study or clinical implementation of the behaviorally based social skill groups in order to minimize the chance for potential biases.

**Qualifications of Treatment Providers**  There are no specific credentials or certifications which are required for a professional to imple-ment behaviorally based social skill groups for individuals diagnosed with ASD. What is required is that the professional is well trained in the principles of behavior analysis and is not just trained on how to simply follow a set of procedures or rules. It is not enough for a profes-sional to know how to follow a protocol on the implementation of video

is not enough for a profes-sional to know how to follow a protocol on the implementation of video modeling, but rather, the professional needs a thorough understanding of the principles behind video modeling. Profes-sionals also need to be fluent in the implementa-tion of a variety of procedures (e.g., video modeling, CNC, TIP) within the context of social skills groups. Additionally, the professional should be well trained in social curriculum and curriculum development to ensure the teaching

should be well trained in social curriculum and curriculum development to ensure the teaching of meaningful and functional social curriculum. Furthermore, professionals should be trained in how to work collaboratively and supportively with parents. This training must be intensive (i.e., more than 40 h of general training in behav-ior analytic principles) and an individual should not be considered competent based on any time requirement (e.g., 40, 1000, or 1500 h) or solely on responses to

competent based on any time requirement (e.g., 40, 1000, or 1500 h) or solely on responses to questions or scenarios (e.g., per-formance on a multiple choice test). Rather, com-petency should be determined based on a performance-based assessment, in addition to any written assessments. Although, it is more important that a professional is qualified rather than certified, it may be a requirement by some third-party payers that a professional be certified or licensed. If this is the case, it is

by some third-party payers that a professional be certified or licensed. If this is the case, it is important that the professional understand that a certification or license does not necessarily mean that the pro-fessional is qualified to implement a behaviorally based social skill group.

**Behaviorism**  **Definition**  Behaviorism is a philosophy of science where behavior is the unit of study and several suppositions about the science of behavior are made. Behaviorism focuses on the study of behavioral phenomenon that function under the same principles of conditioning. This includes behaviors that are both public and private. Finally, use of mentalistic terminology (e.g., I feel, I think, I believe) is not helpful in examining behavior and, in fact, ends the examination of a

I think, I believe) is not helpful in examining behavior and, in fact, ends the examination of a phenomenon. There is some confusion when discussing behaviorism, particularly the radical behaviorist position of B. F. Skinner by critics wherein people assume that covert behaviors or behavior that occurs “under the skin” such as thoughts and feelings are not important to the study of behavior. The main impediment to using private events, those internal to the individual, is the difficulty in

The main impediment to using private events, those internal to the individual, is the difficulty in corroborating these events by another individ-ual. Given the need for objective measurement of behavioral phenomenon, the inability to observe internal events makes inclusion of private events a challenge in discussing and defining behavioral principles. The challenge for behaviorism is presenting behavior as the primary unit of analysis for psy-chology where the general public tends to support the

as the primary unit of analysis for psy-chology where the general public tends to support the idea that the “mind” or mental events are the focus and cause of a person’s behavior. Mentalis-tic concepts such as frustration, anxiety, depres-sion, or anger are not helpful in our understanding of behavior and were deemed “explanatory fic-tions” by Skinner. Such concepts do not add to our understanding of behavioral phenomena; rather, they end the analysis. Behaviorists look to the behavioral

of behavioral phenomena; rather, they end the analysis. Behaviorists look to the behavioral manifestations of what is termed frus-tration, anxiety, depression, and anger and attempt to explore the environmental stimuli that function to maintain and reinforce said manifestations. Behaviorism maintains that behaviors that are overt (observable) and private (“within the skin”) can both be subjected to objective observations with the latter suffering from the challenges noted above with regard to

to objective observations with the latter suffering from the challenges noted above with regard to corroboration of a second observer. Therefore, some behaviorists view thinking and feeling as behavior in the same way as overt behaviors such as running, typing, and speaking. While there is some discussion about the utility of attempting to analyze these covert behaviors (see discussion below), there is no argu-ment that individuals engage in covert behavior.

Three type of behaviorism are generally discussed: *   Methodological Behaviorism – The study of behavior should focus only on those behaviors that are observable and that no mental states should be considered in the analysis. This is most closely associated with John Watson.

*   Psychological Behaviorism – Associated with B. F. Skinner, psychological behaviorists focus on the functional relationship between environmental events (antecedents and conse-quences) and the behaviors produced by those environmental events.

*   Analytical Behaviorism – A behaviorist position that posits that mental states can be explained through consistent patterns of behavior. These patterns can lead to predictions of an individ-ual’s behavior given a specific set of environ-mental stimuli.

**Historical Background**  Behaviorism has links to several philosophical schools including: *   Associationism – Classical associationism dealt with the organization of ideas based on rela-tionships between mental states and can be seen in writings as far back as Aristotle. David Hume presented a model of association-ism that suggested that our understanding of reality was a product of three laws of association. These included the Law of Resem-blance, things that are similar are associated;

of association. These included the Law of Resem-blance, things that are similar are associated; the Law of Contiguity, things that occur close in time will be associated; and the Law of Cause and Effect, the most important aspect of associationism wherein the individual iden-tifies causal influences on the environment. This is the basis of scientific inquiry.

*   Logical Positivism – A philosophical perspective that posits the only true knowledge is knowl-edge derived from scientific endeavors. Meta-physical explanations are to be abandoned as they cannot be demonstrated empirically.

**Behaviorists**  John Watson is considered the earliest psycholo-gist to identify himself as a behaviorist. In his work Psychology as the Behaviorist Views It, he described the power of behavioral approaches and suggested that psychology should be the science of behavior and not the mind. Watson’s work was with reflexive behavior (see below) and therefore was responding to a limited amount of informa-tion on behavior and its relationship with the environment. His work led to significant

of informa-tion on behavior and its relationship with the environment. His work led to significant criticism and a backlash from traditional psychologists who viewed his claims as boastful and whose methods generally consisted of introspection or turning inward for causes of behavior rather than to envi-ronmental influences.

Pavlov – Ivan Pavlov’s classic experiments on classical conditioning, (see below), demonstrated a conditioning paradigm that involved reflective behavior similar to Watson. In his classic experi-ments, Pavlov paired a neutral stimulus (NS), or a stimulus with which the organism does not have any learning history with, with an unconditioned stimulus (UCS), a stimulus that elicits an uncon-ditioned response, a reflex response that occurs in the presence of the UCS. In Pavlov’s experiments, the

response, a reflex response that occurs in the presence of the UCS. In Pavlov’s experiments, the neutral stimulus was a tone and the uncondi-tioned stimulus was the presentation of food. In response to the presentation of the food, the organism, a dog, salivated. Through repeated pairings of a tone (NS) and the food (UCS), the tone began to elicit the response of salivation without the presence of the food. The tone had become a conditioned stimulus (CS) that elicited the conditioned response

of the food. The tone had become a conditioned stimulus (CS) that elicited the conditioned response (salivation).

E. L. Thorndike – Thorndike’s experimental work led to his theory of Connectionism and the Law of Effect. He examined learning processes in experiments with animals. Animals, generally cats, were placed in a puzzle box that required the animal to perform an action to escape the box and receive a reward. Thorndike observed that the time animals took to perform an action (e.g., lever press) decreased after successful attempts to escape. Additionally, animals did not demonstrate the required

after successful attempts to escape. Additionally, animals did not demonstrate the required action after observing other animals engaging in the behavior. This led to Thorndike’s formulation of a cause/effect description of learn-ing. He tracked “learning curves” in the behavior of animals to demonstrate that learning was a gradual process of trial and error. Thorndike’s Law of Effect indicates that behavior that is followed by positive consequences is likely to be repeated in the future.

Hull – Clark Hull presented a theory of learn-ing termed drive-reduction theory. Drive-reduction theory suggests that behaviors occur in response to internal drives of the organism. Drives are generally important for survival including hunger, thirst, and warmth. Stress on the organism leads to behaviors that reduce the drive and reduce stress. Drive reduction reinforces the organism and those behaviors will occur more frequently in the future. Hull’s theory presents a stimulus-response form

behaviors will occur more frequently in the future. Hull’s theory presents a stimulus-response form of behaviorism where the stimulus (drive) elicits the behavior.

Skinner – Burrhus Frederick (B. F.) Skinner demonstrated operant conditioning procedures in laboratory settings. His work described the prin-ciples of behavior that serve as the foundation for the science of the experimental analysis of behav-ior and applied behavior analysis. Skinner’s radi-cal behaviorism was borne out of his observations during experiments, not based on a theory of why organisms behave in a certain way. Skinner pre-sents a response-stimulus understanding of behavior where

behave in a certain way. Skinner pre-sents a response-stimulus understanding of behavior where the consequences that follow a behavior are crucial to the conditioning of behav-ior. Operant conditioning is so named as behav-iors are emitted and operate on the environment. This is contrasted with behaviors that are elicited by environmental events and are reflexive in nature. Skinner extended his work in the labora-tory to extrapolations to the development of lan-guage, social engineering, and

work in the labora-tory to extrapolations to the development of lan-guage, social engineering, and education in his later work. All of these extensions of his work were based in operant conditioning methodology.

**Current Knowledge**  **Approaches**  Methodological behaviorism is associated with John Watson following the publication of Psy-chology as the Behaviorist Views It. Within this paradigm, observable behavior is the only thing that should be studied and all things within the body should not be considered the realm of psychology. Radical behaviorism was proposed by B. F. Skinner. The term radical behaviorism referred to the acknowledgement that a science of human behavior must account for

behaviorism referred to the acknowledgement that a science of human behavior must account for covert behaviors (or behaviors within the skin) to be complete. The challenge for establishing the role of internal events into a functional analysis of behavior is that these are not accessible to anyone other than the individual being studied. This, therefore, does not allow for corroboration of these internal events as they are not observable.

**Types of Conditioning**  Respondent conditioning or classical condition-ing is the process of conditioning reflexes to respond to environmental stimuli. This type of conditioning is also known as stimulus-response conditioning where the stimulus (S) precedes the response (R). This relationship is often represented as S - > R. In a traditional classical conditioning arrangement, a neutral stimulus (e.g., a flashing light) that has no previous history of being paired with the occurrence of the

(e.g., a flashing light) that has no previous history of being paired with the occurrence of the reflex (e.g., an eye blink) is presented along with a stimulus that elicits the reflex (e.g., a puff of air). The stimulus that elicits the reflex response is known as the unconditioned stimulus as it does not require a learning history to elicit the reflex or unconditioned response. After repeated pairings of the neutral stimulus with the unconditioned stimulus, presentation of the neutral stimulus will

of the neutral stimulus with the unconditioned stimulus, presentation of the neutral stimulus will come to elicit the unconditioned response without presenting the unconditioned stimulus. For this example, presenting the flashing light prior to the puff of air over multiple trials will eventually lead to the flashing light eliciting eye blinking without presenting the puff of air. This arrange-ment is represented as: Neutral stimulus ! unconditioned stimulus ! unconditioned response: With

is represented as: Neutral stimulus ! unconditioned stimulus ! unconditioned response: With continued pairing of the neutral stimulus and the unconditioned stimulus, the neutral stim-ulus, now a conditioned stimulus, comes to con-trol the occurrence of the unconditioned response, now called a conditioned response. This arrange-ment is represented as: Conditioned stimulus ! conditioned response: When the conditioned stimulus is presented, the response follows as if the unconditioned stim-ulus

When the conditioned stimulus is presented, the response follows as if the unconditioned stim-ulus had been presented. In this instance, behavior is elicited, that is, behavior is caused by the occur-rence of an external stimulus. Continued presen-tation of the conditioned stimulus without the presentation of the unconditioned stimulus will gradually lead to reductions in the conditioned response. This process is termed extinction.

Operant conditioning occurs when a behavior comes under the control of consequences that follow it. The operant conditioning paradigm can be described in the three-term contingency: Antecedent ! Behavior ! Consequence: An antecedent is a stimulus event that precedes the occurrence of behavior where as a conse-quence is a stimulus event that follows the occur-rence of the behavior. A behavior is anything an organism does and results in a change in the environment. During operant conditioning,

anything an organism does and results in a change in the environment. During operant conditioning, an organism’s behavior is subject to consequences that lead to increases (reinforcement) or decreases (punishment) in the future occurrence of that behavior. Along with these increases, antecedent stimulus events come to serve as discriminative stimuli for the likelihood of reinforcement. That is, environmental events signal the availability of reinforcement if the organism engages in a

That is, environmental events signal the availability of reinforcement if the organism engages in a partic-ular repertoire of behavior. Skinner’s work on shaping is instrumental to the development of learned repertoires of behavior. Shaping involves reinforcement of closer and closer approximations to the target behavior. For example, a rat in an operant chamber may be required to push a lever to access food (a reinforcer). As the rat moves about the cage and orients to the lever, a click is

to access food (a reinforcer). As the rat moves about the cage and orients to the lever, a click is followed by the delivery of the reinforcer. As the rat begins to orient toward the lever more fre-quently, reinforcement is delivered and then with-held. This withholding is called extinction. Extinction leads to variability in responding where the rat may now touch the lever which would be followed by reinforcer delivery. This process continues until the rat reliably presses the lever. Shaping,

by reinforcer delivery. This process continues until the rat reliably presses the lever. Shaping, extinction, and schedules of reinforcement serve as the basis for our under-standing of the development of behavioral repertoires.

**Molecular Versus Molar Behaviorism**  The contrast of molar and molecular behaviorism represents the focus of attention in a functional analysis. Those who support a molecular view of behaviorism support looking at the moment to moment changes in behavior and analyze the direct antecedents to and consequences of those behaviors. This is a view that is in line with Skinner’s analyses of behavior in his basic exper-imental work. A molar perspective looks at behav-ior over time and views

in his basic exper-imental work. A molar perspective looks at behav-ior over time and views behavior in the context of other, longer sequences (chains) of behavior. That is, when describing an event, one needs to observe the behavior to completion as opposed to a moment in time. Lever pressing is best understood as the duration of engaging in lever pressing and not in the instant where the lever is pressed. The molar view contrasts with the molecular view in terms of how responses are

lever is pressed. The molar view contrasts with the molecular view in terms of how responses are strengthened. The molecular view focuses on increases in response rates as an indicator of response strength. In con-trast, the molar view focuses on increased alloca-tion of responding to one or another behavior in a choice paradigm. That is, all behavior requires choices between responses and the selection of one behavior over another is a function of rein-forcement. There is ongoing discussion

selection of one behavior over another is a function of rein-forcement. There is ongoing discussion among behavior analysts as to which perspective best explains behavioral phenomena.

**Applications**  Experimental Analysis of Behavior – The exper-imental analysis of behavior has a primary focus on basic research, that is, research on human and nonhuman organisms whose purpose is to develop greater understanding of behavioral prin-ciples. This, in turn, enhances our understanding of conditions that reliably predict their occur-rence. The experimental analysis of behavior is responsible for our understanding of reinforce-ment, schedules of reinforcement, and their impact on

for our understanding of reinforce-ment, schedules of reinforcement, and their impact on behavior, punishment, discriminative stimuli, and choice. Basic behavioral principles demonstrated in laboratory settings serve as the basis for procedures used in applied settings.

Applied Behavior Analysis – Applied behavior analysis focuses on the application of behavioral principles to socially important behavior (Baer et al. 1968). Applied behavior analysis limits its scope of focus to the improvement of socially important behavior. This is not a limitation of applied behavior analysis, but rather, the need to focus on those behaviors brought to our attention as needing improvement. Methods for assessing the environmental variables that control behavior are

as needing improvement. Methods for assessing the environmental variables that control behavior are consistent between the experimental analysis of behavior and applied behavior analysis. Applied behavior analysis practices include appli-cation of reinforcement contingencies, stimulus control procedures, shaping, chaining, and task analysis and are applied to various populations and areas of practice. Applied behavior analysts have formed an accrediting body and established criteria for

of practice. Applied behavior analysts have formed an accrediting body and established criteria for university coursework and supervision that leads to certification as a board-certified behavior analyst.

**Future Directions**  Behaviorists continue to evaluate and extend our understanding of the basic principles of behavior and application of these principles to socially sig-nificant behaviors. Extensions to complex human behaviors continue to fields such as pharmacol-ogy, neuroscience, performance management, gun safety, interventions for addiction and gam-bling, and treatment for individuals with neurodevelopmental disorders including autism spectrum disorders.

**Behaviorist Theory**  **Definition**  Behaviorism is widely used to refer to the philos-ophy of a science of behavior. More specifically, within the field of psychology, behaviorism explains responses of humans and other animals only in relation to environmental stimuli and observable and measurable responses to those stimuli. There are various forms of behaviorism: structuralism; behaviorism that uses cognition as causal factors (e.g., cognitive behavior modifica-tion); social learning theory,

uses cognition as causal factors (e.g., cognitive behavior modifica-tion); social learning theory, in addition to meth-odological behaviorism; and radical behaviorism. In his text, About Behaviorism, B. F. Skinner (1974) wrote: “Behaviorism is not the science of human behavior, it is the philosophy of that sci-ence” (Cooper et al. 2007).

**Historical Background**  Prior to the introduction of behavioral science, the field of psychology consisted of the study of states of mind and mental processes. There are four historical building blocks of behaviorism: classi-cal conditioning as presented by Pavlov, Thorndike’s law of effect, Watson’s experiments with human conditioning, and Skinner’s concep-tualization of operant conditioning. The development of behaviorism is largely attributed to John B. Watson who wrote a seminal article

The development of behaviorism is largely attributed to John B. Watson who wrote a seminal article in 1913 in which he argued that psychology should be viewed as a purely objective experi-mental branch of natural science. As such, the goal should be to study the prediction and control of behavior through direct observation of the rela-tionship of environmental stimuli and resulting evoked responses. This relationship became known as the stimulus-response (S-R) paradigm, and Watson proposed that

This relationship became known as the stimulus-response (S-R) paradigm, and Watson proposed that it could be used to predict and control human behavior in a way that would allow practitioners to improve performance in areas such as education, business, and law. Although Watson later made exaggerated claims about the ability to predict and control human behavior, he is recognized for providing a strong case that the study of behavior as a natural science is on par with physical and biological

strong case that the study of behavior as a natural science is on par with physical and biological sciences (Cooper et al. 2007, p. 9). The premise that the study of behavior is a science was further expanded upon in a work by B.F. Skinner who was interested in providing scientific accounts of all behavior. Skinner’s publication of The Behavior of Organisms (1938, 1966) summarized his laboratory research and gave rise to two kinds of behavior, respondent and operant. Respondent behavior is

research and gave rise to two kinds of behavior, respondent and operant. Respondent behavior is behavior that is elicited by a stimulus; it is reflexive and essentially involuntary. Operant behavior is behavior that is influenced by stimulus changes (consequences) that follow the behavior. Skinner argued that the uniqueness of operant behavior warranted its own field of study (see also ▶“Behavior Analysis”). Skinner conducted thousands of laboratory investigations that allo-wed him to

Analysis”). Skinner conducted thousands of laboratory investigations that allo-wed him to systematically study functional rela-tionships of antecedent stimuli, responses, and reinforcement of those responses in a controlled environment. Skinner’s methodology resulted in the foundation of behavior analysis as we know it today.

**Current Knowledge**  Behaviorism has evolved into many areas of study. It is most widely represented in the disci-plines of experimental analysis of behavior and applied behavior analysis. Within the field of applied behavior analysis, methods of behavior-ism have been used to study and affect services in the areas of verbal behavior, public safety, orga-nizational behavior, education, special education, habit reversal, behavioral medicine, cognitive behavior modification, and therapy

special education, habit reversal, behavioral medicine, cognitive behavior modification, and therapy including derived relational responding as it is related to relational frame theory and acceptance and com-mitment therapy, social learning theory, func-tional analysis and assessment of behaviors, and more. The foundation of behaviorism continues as a philosophy of a science of behavior.

**Future Directions**  As previously noted, behaviorism has been the underpinning for both experimental analysis of behavior and applied behavior analysis. As such, its methodology can be used to study many branches of behavior as long as the behaviors can be operationally defined and observable. As noted by Pear and Eldridge (1984, p. 459), “Several alternatives to the operant respondent framework have been proposed, but there is no indication that any of these currently has compa-rable

have been proposed, but there is no indication that any of these currently has compa-rable organizing power. Until such a paradigm is put forth, therefore, we see modification of the operant respondent framework, rather than its elimination, as the more fruitful approach.”

**Bender Visual-Motor Gestalt Test II**  **Description**  The Bender Visual Gestalt II testing kit includes 16 stimulus cards that are separated into two tests. These stimulus cards include an improved version of the original nine designs and new cards that were constructed to be more fitting for the age range covered by the test. All of the stimulus cards have been mechanically drawn to increase the clarity of the design. The administration of the Bender-Gestalt II is considered to be

increase the clarity of the design. The administration of the Bender-Gestalt II is considered to be user-friendly and relatively easy. It occurs in two phases: the copy phase and the recall phase. During the copy phase, the examinee is presented with the age-appropriate stimulus cards one at a time and instructed to copy each design onto a blank, white sheet of paper using a No. 2 pencil. In the recall phase, the examinee is instructed to draw as many of the designs as they can from memory onto

phase, the examinee is instructed to draw as many of the designs as they can from memory onto a new sheet of paper. While there are no time limits for any of the designs or phases, the examiner should begin timing immediately following the presentation of the first design, in order to keep track of the amount of time needed for the examinee to com-plete each separate design. The examiner should also pay attention to behavioral and physical char-acteristics of client. Such observation can help

also pay attention to behavioral and physical char-acteristics of client. Such observation can help determine if poor reproductions of a design are the result of impaired motor or perception abilities. To score the Bender-Gestalt II, a new Global Scoring System has been outlined. This scoring system evaluates the examinee reproduction of designs at the copy and recall phases and rates the quality on a five-point scale. A score of 0 is given to designs that have no resemblance to the design or

on a five-point scale. A score of 0 is given to designs that have no resemblance to the design or are the product of random drawing or scribbling. A score of 4 is given to those designs that are nearly perfect in their resemblance to the design. This scoring system is considered to be fairly simple as specific examples of the Global Scoring System are provided in the manual. How-ever, it requires rigid adherence to the scoring examples and much stricter than previous scoring methods.

**Historical Background**  The Bender Visual Motor Gestalt Test was first published in 1938 by the American Orthopsychi-atric Association under the title of “A Visual Motor Gestalt Test and Its Clinical Use.” It evolved from Max Wertheimer’s early studies of a Gestalt theory of perception. Lauretta Bender adapted nine of Wertheimer’s designs and put them on cards in order to understand the gestalt experiences of psychiatric patients. Spe-cifically, the test was designed as a screening measure to

experiences of psychiatric patients. Spe-cifically, the test was designed as a screening measure to test the ability of the perceptual sys-tem to organize visual stimuli into configural wholes, as a screening measure for neuropsycho-logical damage. It quickly grew in popularity because it was brief and fairly simple to score and administer. Since its original development, the test has undergone many revisions that have largely focused on changes in interpretation and scoring procedures. Awide

many revisions that have largely focused on changes in interpretation and scoring procedures. Awide variety of scoring procedures have been developed over the years using the original Bender-Gestalt Test. Among the most notable are the Koppitz’s Developmental Bender Scoring System, published in 1964 as The Bender-Gestalt Test for Young Children, and Max Hutt’s Scoring System. Under Koppitz scoring system, 30 discrete errors are scored if present, with each design ranging from 2 to 4 possible

system, 30 discrete errors are scored if present, with each design ranging from 2 to 4 possible errors. This scoring procedure was designed to measure neuropsycho-logical impairment and the developmental matu-ration of children. Hutt’s Scoring System, on the other hand, was designed to use the Bender-Gestalt Test as a projective personality assessment for adults. It scored tests based on the frequency and severity with which an examinee deviated from protocol. Koppitz’s original scoring system

and severity with which an examinee deviated from protocol. Koppitz’s original scoring system was adapted after her death by Cecil Reynolds (2007). Notable psychometric problems with the orig-inal version limit interpretation of data from stud-ies utilizing that test. Several studies in the earliest history of autism research utilized the original version of the Bender, but in the context of psy-chometric problems with the test as well as the lack of standardized diagnostic criteria for autism,

problems with the test as well as the lack of standardized diagnostic criteria for autism, these studies are not considered relevant. The test was included in Norcross et al. (2006) list of “Discredited Psychological Treatments and Tests” based on ratings by a large expert panel, either for use in screening neuropsychological impairment or personality function. This presum-ably referred to the original version of the test and its uses, rather than to the revised Bender-Gestalt II. The second

original version of the test and its uses, rather than to the revised Bender-Gestalt II. The second edition of the Bender Visual-Motor Gestalt Test was published in 2003. This new edition is a product of many years of analysis with the first edition of the test, as well as modern research in the fields of psychological testing and test construction. This comprehensive revi-sion added four easier items and three harder items in order to increase the measurement scale. In other words, it lowered

items and three harder items in order to increase the measurement scale. In other words, it lowered the “floor” of the test and created a higher “ceiling” so as to better describe those individuals who score on the extremes of the spectrum.

**Psychometric Data**  The Bender-Gestalt II was normed from a strati-fied, random sampling of 4000 subjects that com-paratively matched US census data from the year 2000. T-sores, percentile ranks, confidence inter-vals, and classification labels are available for subjects ages 4 to 85+ years. The psychometric properties of the test are fairly strong. Interrater reliability is reported at a range of .83 to .84 for the copy phase and .94 to .97 for the recall phase. A validity of .91 was found

of .83 to .84 for the copy phase and .94 to .97 for the recall phase. A validity of .91 was found using split-half procedures. Over a 2–3 week interval, test-retest reliability is between .80 and .88 for the copy phase and .80 to .86 for the recall phase. Construct validity for the Bender-Gestalt II has been supported by moderate correlations to other measures. For example, it has moderate correla-tion of .65 with the Beery-Buktenica Develop-mental Test of Visual-Motor Integration and a

correla-tion of .65 with the Beery-Buktenica Develop-mental Test of Visual-Motor Integration and a correlation of .75 with the Perceptual Organiza-tion factor on the WISC-III.

**Clinical Uses**  The Bender Gestalt II is designed to assess the visual-motor integration abilities of children and adults from 4 to 85+ years of age. It is also designed to be used as a test of motor memory in children and adults ages 5 to 85+. It has been used to identify brain dysfunction in children and adults, and discern emotional problems in chil-dren. Generally, if the Bender-Gestalt II is being used to assess for brain damage, it should be considered a screening device as it is

II is being used to assess for brain damage, it should be considered a screening device as it is limited to severe forms of brain damage. Allen and Decker (2008) found significant differences to indicate impaired performance, after controlling for IQ, in a moderately sized sample of children (mean age ¼ 11) diagnosed with attention-deficit/hyperactivity disorder compared to a healthy comparison group, suggesting possible utility as a measure of func-tion in other disorders autism. Effect sizes

suggesting possible utility as a measure of func-tion in other disorders autism. Effect sizes were very small, however. One study (Volker et al. 2010) has used the Bender Gestalt II to analyze the visual-motor skills of individuals with autism spectrum disorders. In demographically matched subsamples of ASD and healthy children (mean age ¼ 9.7; n ¼ 27 for each group), and after statistical control for IQ, a high-functioning autism spectrum disorder group scored lower than the comparison group

for IQ, a high-functioning autism spectrum disorder group scored lower than the comparison group on the two tests most sensitive to motor function (the copy and supplemental motor scales). There appears to be substantial justification for continued investigation of atypical motor function in autism. A recent review by Dowd et al. (2010) notes the potential utility of motor function as (a) a diagnostic marker of autism, (b) an endophenotype of autism, and (c) a marker of severity of impairment,

marker of autism, (b) an endophenotype of autism, and (c) a marker of severity of impairment, including social-communicative impairment. The Bender-Gestalt II could be used in future studies to characterize basic motor deficits and possibly higher order problems with visuomotor planning and organization.

**Bender, Lauretta**  **Name and Degrees**  Lauretta Bender MD *   B.A. (1922) University of Chicago *   M.A. (1923) University of Chicago *   M.D. (1926) State of University of Iowa  **Major Appointments (Institution, Location, Dates)**  Bender held positions at the Hospital of the Uni-versity of Chicago, the Boston Psychopathic Hos-pital, the University of Amsterdam, the Johns Hopkins University Hospital, and Bellevue Hos-pital in New York, as well as at the University of Maryland.

**Major Honors and Awards**  In 1955, Dr. Bender was the recipient of the Adolf Meyer Memorial Award from the American Psy-chiatric Association for her work on severe psy-chiatric disturbance in children.

**Landmark Clinical, Scientific, and Professional Contributions**  Loretta Bender was an early pioneer in the study of learning disabilities and severe psychiatric distur-bance in children. Highly active at the professional level both as a clinician and researcher, she was involved in development of various approaches to treatment and to theories of childhood psychopa-thology. The Bender-Gestalt test remains in use today. Her view of learning disabilities was based on a theory related to

test remains in use today. Her view of learning disabilities was based on a theory related to discrepancies in areas of maturation, and she emphasized the confluence of various problems in children with learning prob-lems that reflected their common origins. She also worked in the area of language difficulty and conducted some of the early work on reading dis-ability. Her work was conducted at a time when childhood schizophrenia/childhood psychosis was used to describe all severe neuropsychiatric

when childhood schizophrenia/childhood psychosis was used to describe all severe neuropsychiatric distur-bance, i.e., before the distinction of autism as a distinctive diagnostic category was made.

**Short Biography**  A native of Butte, Montana, Lauretta Bender coped with a significant learning difficulty but persevered to become the valedictorian of her high school class. She received her B.A. (1922) and M.A. (1923) from the University of Chicago. She received an M.D. from the State of University of Iowa (1926). Bender held positions at the Hos-pital of the University of Chicago, the Boston Psychopathic Hospital, the University of Amster-dam, the Johns Hopkins University Hospital, and

Psychopathic Hospital, the University of Amster-dam, the Johns Hopkins University Hospital, and Bellevue Hospital in New York as well as at the University of Maryland. Bender was active in many ways at the professional level. She was Director of Research of the new Children’s Unit at Creedmoor State Hospital in the 1950s and while there conducted much of her work with severely impaired children. Her first husband, the psychiatrist Paul Schuler (1886–1940), tragically died after a few years of

Her first husband, the psychiatrist Paul Schuler (1886–1940), tragically died after a few years of marriage. She married Henry B. Parkes, a profes-sor at New York University, in 1954.

**Beneficiary**  **Definition**  **Basic Definition**  A beneficiary is a person for whose benefit property is placed in trust. The beneficiary is the third of three ingredients critical to the cre-ation of a trust: (1) property, usually money, placed in a trust administered by (2) a trustee for the benefit of (3) a beneficiary (restatement). A trust cannot exist without a beneficiary (Bogert, 121). On occasion, American courts refer to the beneficiary by the French phrase cestui que trust. A trust

On occasion, American courts refer to the beneficiary by the French phrase cestui que trust. A trust may have multiple ben-eficiaries. The trust documents dictate when and how much of the trust property a beneficiary will receive.

**Who May Be a Beneficiary**  Any legal entity, including individuals or corpo-rations, may be a beneficiary (Bogert, 125). But, only the entities intended by the creator of the trust, or settlor, to benefit from the trust may be a beneficiary. The settlor may be a beneficiary, and even the trustee may be a beneficiary as long as he or she is not the sole trustee. Many trusts have multiple beneficiaries who can be named individually or can be designated as a “class,” such as all of the children of a

who can be named individually or can be designated as a “class,” such as all of the children of a partic-ular person.

**Rights of a Beneficiary**  A beneficiary’s interest in a trust varies according to the type of trust created (Dietz). In a “fixed trust” in which the benefits are spelled out pre-cisely by the trust documents, the beneficiary has an ownership interest in the trust proceeds. If the trust is a “discretionary trust,” meaning that the trustee has discretion as to when and how much of the trust property to give to the beneficiary, a beneficiary’s interest is subject to the determina-tion of the

property to give to the beneficiary, a beneficiary’s interest is subject to the determina-tion of the trustee. A beneficiary may refuse the benefits of the trust by disclaiming her right to them. The dis-claimer may be implied by conduct “inconsistent with a trust for his” (Bogert, 170) ASD-related issues.

**Benhaven Residential Services**  **Definition**  Benhaven is an agency that provides educational, day program, and residential supports to adults and adolescents with autism and developmental disabilities in New Haven, Connecticut, and sur-rounding towns. The residential services division of the program, which is the topic of discussion in this entry, entails a variety of programs including in-home consultation, family respite, professional parent settings, and group homes. In each setting,

consultation, family respite, professional parent settings, and group homes. In each setting, the emphasis is on individualized programming and is driven by the principles of positive behav-ioral support (Koegel et al. 1996; Lavigna and Donnellan 1986; Smull and Harrison 1992; Struc-tured Teaching 2010).

**Historical Background**  Benhaven’s residential services developed in response to the overwhelming need for such ser-vices in the early 1970s. Amy Lettick, the director and founder of Benhaven School and the mother of an autistic son, Ben, recognized that need. She believed that in order for many children with autism and their families to function optimally, the continuity and consistency of 24-h program-ming and care was necessary. In addition, during the late 1960s and early 1970s, quality

program-ming and care was necessary. In addition, during the late 1960s and early 1970s, quality educa-tional programs were few and far between, so the development of a residential program allowed Benhaven to accept many students in need. Benhaven School was established in 1967, followed in 1972 by the purchase and develop-ment of one home, the beginning of Benhaven’s residential program. With many more applicants looking for both school and residential support, more homes were opened, and by

more applicants looking for both school and residential support, more homes were opened, and by 1991, a total of 7 homes served 34 residents. In 1990, Benhaven introduced its Shared Living Program. This pro-gram gives people the opportunity to live in a typical home with the skilled support of licensed families and individuals. In 1996, the Individual and Family Support Services Program was cre-ated to provide support to children and families in their own home. Benhaven has had a long-standing

to provide support to children and families in their own home. Benhaven has had a long-standing supportive relationship with the Yale Child Study Center, particularly with Dr. Fred Volkmar and the late Dr. Donald Cohen. In the mid-1980s and early 1990s, under the direction of its (now retired) Executive Director, Larry Wood, Benhaven underwent a major shift in its understanding of state-of-the-art approaches to teaching and supporting people with autism. Benhaven’s administrative, teaching, and

approaches to teaching and supporting people with autism. Benhaven’s administrative, teaching, and managerial staff received extensive training in structured teaching practices, functional behavioral support, and team building, conducted by expert leaders in the field, such as Dr. Gary LaVigna and Dr. Anne Donnellan. This training changed how Benhaven provides services to its program participants and training to its staff. This rigorous approach to staying informed about best practices in the

and training to its staff. This rigorous approach to staying informed about best practices in the field of autism has continued at Benhaven throughout the years. Under the leadership of Benhaven’s new Executive Director, Kathryn DuPree, plans for further residential development to meet the growing need for adult residential services are underway.

**Rationale or Underlying Theory**  The rationale for Benhaven’s approach to residen-tial services is that, based on experience, individuals with autism have a unique set of learn-ing characteristics that respond well to a visual and structured approach to teaching. Positive behavioral intervention is an established approach that begins with understanding the factors that drive behavior through a process of functional analysis of problem behavior (Fox et al. 2000; O’Neill et al. 1997). When

a process of functional analysis of problem behavior (Fox et al. 2000; O’Neill et al. 1997). When functions of behavior can be identified, an individualized behavior sup-port plan is designed and implemented. The majority of interventions that make up the plan are preventative and positive in nature. They are aimed at maximizing a comfortable physical and social environment for the individual, recognizing and preventing triggers to challenging behavior, and teaching alternative, appropriate

recognizing and preventing triggers to challenging behavior, and teaching alternative, appropriate means of communicating needs and wishes. The plan also includes carefully planned interventions for man-aging challenging behavior when it does occur. This approach requires having knowledgeable, educated, and well-trained leadership as well as direct support staff and also requires that sup-porters’ professional development plans include goals to establish positive relationships with the

professional development plans include goals to establish positive relationships with the residents in their care. The most important aspect of the relationship between support provider and the person receiv-ing support is respect. Respect is the cornerstone upon which all support services should be ren-dered. The roles and tasks assumed by the pro-vider of support will not be as effective if this foundation of respect is missing. The support pro-vider’s respect should not have to be earned. It

foundation of respect is missing. The support pro-vider’s respect should not have to be earned. It must be there unconditionally. Part of the challenge of this work is learning how to provide choices, honor preferences, and respect the person’s individuality while satisfying the professional responsibilities associated with helping the person stay safe and healthy, helping the person learn, helping the person gain new experiences, and helping the person avoid disap-pointment or embarrassment.

the person gain new experiences, and helping the person avoid disap-pointment or embarrassment. Responding to this challenge is what makes the work more of an art than a science. Balancing the role of supporting what the person wants with the temptation to control because “teacher knows best” can be frus-trating, and supporters may find themselves too far in one direction or the other. Approaching the work from the foundation of respect allows con-tinual assessment of that balance while

the work from the foundation of respect allows con-tinual assessment of that balance while struggling to carry out multiple and sometimes conflicting roles. Constantly striving to learn and do better is part of the job.

**Goals and Objectives**  The approaches described here are intended to address issues that exist for people with autism as a result of the inability to communicate or relate to the social world in a typical way (American Psychiatric Association 2000). Challenging behavior is a frequent problem in autism and can be highly interfering to a person’s relationship with one’s family, to relationships with peers and teachers, to learning, and to one’s ability to develop functional life skills and

with peers and teachers, to learning, and to one’s ability to develop functional life skills and experience a broad range of opportunities. Challenging behav-ior is most often the result of a person’s inability to communicate needs, desires, discomfort, and refusal, and many of the other things a person typically resolves through the use of spoken or symbolic language. Many people with autism, due to the social delay inherent in the disability from infancy, have not learned the vital process of

to the social delay inherent in the disability from infancy, have not learned the vital process of getting needs met through social interactions with others (Volkmar and Wiesner 2009). In the absence of language or another way to express one’s needs, maladaptive behavior evolves as an often successful means to quickly and effectively make choices, refuse to participate, or obtain something desired. Other characteristics of autism, for example, distractibility, or need for sameness, can

desired. Other characteristics of autism, for example, distractibility, or need for sameness, can interfere with learning and compound a cognitive delay. Heightened senses in many people with autism create other barriers to participation. For example, a sensitivity to noises may limit the physical and social environments in which a person may be comfortable, in this way narrowing a person’s experiences and learning opportunities. Addition-ally, each person with autism has a unique set of

experiences and learning opportunities. Addition-ally, each person with autism has a unique set of characteristics and a distinctive learning style. Given all these factors, supporting and teaching people with autism in a residential setting requires a multilayered approach.

One objective in this process is the thoughtful establishment of an environment that makes sense for an individual, taking into consideration both the physical aspects of a setting, such as the amount and type of space that are important, and the social environment, involving the number of others living and working in the setting. Another extremely important factor is the establishment of a means of communication for each individual, including the teaching of the skills necessary to utilize

of communication for each individual, including the teaching of the skills necessary to utilize that communication method. A behavior support plan is a vital component of a residential program, which guides instructors in the preven-tion and response to whatever challenging behav-iors may exist, while teaching appropriate alternatives to behavior. Skill development is another objective of the program. Functional skills are taught in the con-text of caring for one’s home and oneself while living

Functional skills are taught in the con-text of caring for one’s home and oneself while living with cognitive, communication, and behav-ioral challenges. Skills to participate in the com-munity, including recreational as well as functional and employment settings, are also essential. Other goals of the program include establishing and/or building a person’s relation-ship with his or her family and friends and attend-ing to a person’s health and medication needs. In short, the responsibility is

friends and attend-ing to a person’s health and medication needs. In short, the responsibility is to teach skills and pro-vide opportunities to empower and equip residents with a range of appropriate choices and productive control that will enhance their quality of life.

**Treatment Participants**  Those who are most likely to benefit from treatment at Benhaven’s residential program are individuals whose primary diagnosis fits the DSM-V diagnos-tic criteria for autism spectrum disorder and others with cognitive delays and behavioral symptoms similar to those experienced in autism. This is the case because treatment is designed to address the specific learning characteristics of people with autism. However, the strategies described here could be beneficial to

characteristics of people with autism. However, the strategies described here could be beneficial to others experiencing learning or behavioral challenges, since the primary charac-teristics involve individualized and structured teaching. While Benhaven’s residential program currently serves adolescents and adults, the treat-ment procedures are suitable for people with devel-opmental disabilities of any age. Many of the program participants have additional psychiatric diagnoses that are

of any age. Many of the program participants have additional psychiatric diagnoses that are addressed through consultation with outside providers. Because the treatment emphasis is on autism and symptoms of other developmental delay, those with other primary psy-chiatric diagnoses without cognitive delay would not be well suited to treatment at Benhaven’s resi-dential program.

**Treatment Procedures**  All treatments begin with the process of conducting assessments, which is the first step to designing an individualized program for a person with autism.

**Functional Behavioral Assessment and Behavior Support Plan Development**  A functional behavioral assessment is a means of identifying the important factors that contribute to the existence of challenging behavior in a person with autism. This process involves interviewing the team of people supporting the individual to determine what factors probably cause and main-tain the target behavior(s). This process identifies likely functions of that behavior and tests these hypotheses through

This process identifies likely functions of that behavior and tests these hypotheses through observation of the individual in his or her life settings to determine whether the identified functions are supported. Once functions of behavior are established, a series of strategies are developed in the form of an individualized behavior support plan. This plan lays out compo-nents to address the target behavior(s) from dif-ferent angles. Preventative strategies are designed to predict and prevent

behavior(s) from dif-ferent angles. Preventative strategies are designed to predict and prevent behavior from happening through management of antecedent settings and events. For example, it might direct instructors to give a person a “heads up” that a difficult transi-tion is coming. Rather than interrupting the person relaxing with a magazine and announcing “It’s time to do your laundry,” a situation that is likely to cause a target behavior to occur, the instructor may be directed to provide

that is likely to cause a target behavior to occur, the instructor may be directed to provide the individual with a verbal and visual countdown. The instructor will verbally alert the person about the change in activ-ity at 1-min intervals and will use a visual timer to more concretely help the person recognize the passage of time.

The behavior support plan also contains teach-ing and coping strategies. Coping strategies are means for a person to handle the challenges of the environment or demands in the daily schedule. For example, rather than striking out in frustration when the environment is too noisy or overwhelm-ing, a person may be taught to simply leave the area for a quieter environment within his home. Or, a person may be taught to utilize calming techniques, such as music or deep breathing, when he senses

person may be taught to utilize calming techniques, such as music or deep breathing, when he senses himself becoming overwhelmed. He may also be taught a means to communicate his need, for example, saying “it’s too loud” as a means to ask an instructor to help find a quieter place. Teaching strategies teach a person to engage in alternative actions to the target behav-ior. These alternatives are meant to be positive and equally efficient ways to get the same needs met. When negative behavior is

meant to be positive and equally efficient ways to get the same needs met. When negative behavior is the result of inability to communicate in a functionally appropriate man-ner, teaching strategies will involve teaching a person a means to communicate something he was not able to initiate on his own before, such as a need, a desire to change activities or environ-ment, or to refuse something. Teaching strategies also involve teaching a person skills to accom-plish things that may have only been

strategies also involve teaching a person skills to accom-plish things that may have only been accom-plished before through behavior, for example, learning to ask for a break rather than hitting the instructor to indicate frustration with the activity. Teaching strategies can also be a means to help someone predict events and have a sense of order in life through the use of visual schedules and scripts. This will be described further below.

Finally, behavior support plans contain strate-gies for providing consequences to challenging behavior and for responding to challenging behav-ior if and when it does occur. The term “conse-quence” refers to the events that occur immediately following the occurrence of a behavior, whether positive or negative. The way instructors respond to the behavior has a major impact on whether the behavior is strengthened or weakened. The goal, of course, is to strengthen positive behaviors and weaken

is strengthened or weakened. The goal, of course, is to strengthen positive behaviors and weaken negative ones, so the strategies are designed to do just that. The consequence for engaging in a positive behavior, such as utilizing communication to ask for help, is to provide the help and offer praise for the communication. Done consistently, this will strengthen the communica-tion response. Done inconsistently, for example, by saying, “I’m glad you asked for help, but I think you can do that on

for example, by saying, “I’m glad you asked for help, but I think you can do that on your own,” will result in a weak learning and erratic use of the skill. Concurrently, the response to negative behavior must be clearly designated and consistently applied. If the function of screaming at the instructor is to end the activity, then responding to screaming by endingthe activity will maintain that behavior. Rather, the plan might designate that breaks are initially built in after very short work

behavior. Rather, the plan might designate that breaks are initially built in after very short work periods, preempting the person from becoming frustrated and acting out. The resident is shown how to ask for a break, perhaps by sign, picture, or words, and then is guided to do that before any frustration sets in. He is immediately rewarded with his break for engaging in the posi-tive behavior. Screaming would be ignored, while the person was helped to utilize communication to ask for a break.

would be ignored, while the person was helped to utilize communication to ask for a break. Reactive strategies are designed to manage a crisis situation and direct instructors in how to respond when challenging behavior does occur. These response strategies are not intended to teach the person any new skills. The teaching comes from all the prior components – antecedent, teach-ing, coping, and consequence strategies. Reactive strategies are an important part of the plan because it is desirable

strategies. Reactive strategies are an important part of the plan because it is desirable and necessary to train instructors in proper, safe response techniques rather than rely on improvisation in the heat of the moment. Tech-niques that have proven to be the most effective and safe for that individual are carefully designed and trained. Reactive strategies often include some kind of debriefing for the individual and for the instructors to help everyone get back on track once the incident is

for the individual and for the instructors to help everyone get back on track once the incident is over.

**Skills Assessment and Individualized Program Development**  Another important component of teaching indi-viduals with autism in a residential setting is the creation of an individualized learning plan. While each person’s program is specifically tailored to his or her specific learning needs, there are some learning style characteristics that many people with autism share and which form the basis for a learning program for a person living in a residential setting. Examples of some broad

basis for a learning program for a person living in a residential setting. Examples of some broad learning characteristics in autism include difficul-ties with changes in routines and schedules, dis-tractibility, trouble organizing and filtering out relevant information, difficulty with auditory pro-cessing, and poor understanding of social cues. It is important to design a learning environment and individualized program that takes these character-istics into consideration while also factoring in

individualized program that takes these character-istics into consideration while also factoring in the unique learning style of the individual himself. Components of a residential program that uti-lize a structured approach to teaching include the strong use of visual supports. Visual supports are those environmental and teaching tools that rely primarily on the visual rather than auditory modal-ity to help teach a person with autism. Visual supports are used to help organize the environ-ment,

to help teach a person with autism. Visual supports are used to help organize the environ-ment, for example, by labeling drawers and cabi-nets with pictures and/or words, by arranging furniture and other items to create work and rec-reational spaces, by color coding and using other visual cues, and by storing and arranging materials in clear plastic containers or designated closets so the contents can be accessed easily. Visual sup-ports are also used to help a person organize, understand, and

can be accessed easily. Visual sup-ports are also used to help a person organize, understand, and predict his routine. These take the form, for example, of picture schedules, writ-ten checklists, or pictorial or written scripts. One type of visual support that is well suited to a learner with autism is the use of a “first . . . then” map, where a person who is anxious for or moti-vated to engage in a specific activity can see from pictures or words that once the less preferred task is over, the

in a specific activity can see from pictures or words that once the less preferred task is over, the preferred activity can take place:

*   “First clean your bedroom, then play video games.” A consequence chain is another visual tool that helps a learner see and predict the course of events:

*   “It’s sunny outside: I can go swimming. *   It’s raining out: I cannot go swimming: I will go to the gym.” There are dozens of tools and variations that can be created to visually assist a learner to under-stand his routine, including the use of modeling, pointing, sign language, photographs, objects, video, and even handheld devices and applications.

Lastly, visual strategies are very widely used when teaching skill-building activities. Unlike typical teaching approaches done through pre-sentation of verbal material, visual strategies pre-sent information and provide direction more concretely. The spoken word is transitory and fleeting in nature and relies heavily on strong auditory processing skills, whereas visual tools are tangible and enduring. Some examples of visual instructional tools are picture recipes that lay out directions for

Some examples of visual instructional tools are picture recipes that lay out directions for preparing a meal or picture checklists for grocery shopping. The method of displaying the visual tools is based on the indi-vidual’s strengths. For some, laying the pictures out sequentially on one long strip is effective; for another, gathering them in a photo album which the learner turns as he completes each step is more suitable. Picture strips may be posted on a wall to assist a person through a

each step is more suitable. Picture strips may be posted on a wall to assist a person through a step-by-step process, such as brushing one’s teeth. Cards or pictures can be kept in a wallet which the learner can pull out as needed. Visual tools are also useful in assisting learners to make choices. Giv-ing the learner two or more concrete visual items to choose from increases the likelihood the per-son will select the truly preferred item, rather than simply repeating the last item heard, which

will select the truly preferred item, rather than simply repeating the last item heard, which often happens when people are verbally asked to make a choice. The teaching method most commonly and effectively used at Benhaven is “errorless learn-ing,” a system of teaching a person skills through the use of carefully designed and implemented prompts (Etzel and LeBlanc 1979; McDuff et al. 2001). Skills are broken down into a series of steps, called a “task analysis,” and instructors provide

Skills are broken down into a series of steps, called a “task analysis,” and instructors provide prompting designed to help the person complete each step before making an error. Pro-mpts are planfully faded as the learner gains inde-pendence at each step. Instructors are trained to provide prompts that are best suited to that indi-vidual’s needs. A person with strong memory and visual skills may be successful following a series of pointing prompts – the instructor points to each step in the

be successful following a series of pointing prompts – the instructor points to each step in the sequence and the learner responds by engaging in the step. To make a sandwich, for example, the instructor points to the loaf of bread, the learner takes out two slices of bread; the instructor points to the filling, the learner places the filling on the bread; etc. Another learner with greater needs may be more successful with physical prompts, where the instructor guides the person’s hands to take

be more successful with physical prompts, where the instructor guides the person’s hands to take out the bread and place it on the plate, take the filling and place it on the bread, etc. Other types of prompts include modeling, gesturing, signing, and, of course, visual supports like photos, pictures, or written instructions. Ver-bal prompts are not widely recommended for peo-ple with autism as they rely too heavily on auditory processing skills and, unlike the other types of prompts, are not

they rely too heavily on auditory processing skills and, unlike the other types of prompts, are not easily conducive to fading.

**Efficacy Information**  The methods described here, including func-tional behavioral assessment, positive behavioral intervention, structured teaching, and errorless learning, are all widely used in the field of edu-cation for people with developmental disabilities and are accepted as effective methods to teach positive behavior and functional skills to those on the autism spectrum (Connecticut State Department of Education 2005). Success of these strategies in a residential setting relies

State Department of Education 2005). Success of these strategies in a residential setting relies heavily on individualized program planning, consistency of implementation by well-trained and caring direct support staff, and strong over-sight of routines and practices by knowledgeable administrative personnel.

**Outcome Measurement**  Treatment outcomes are measured using a variety of tools. Progress toward reducing negative behaviors and increasing adaptive ones are mea-sured through behavioral data charts that track frequency, duration, and intensity of behavior. Observational and anecdotal reports are com-monly used to track the circumstances under which a behavior occurred. Positive behavior is tracked as well, for example, the frequency with which a person engages in a new, positive behav-ior

as well, for example, the frequency with which a person engages in a new, positive behav-ior or skill and under what circumstances. Mood and behavior may also be assessed via rating scales, for example, by rating a person’s affect against a certain set of observable and describable attributes. Data is turned into graphs and charts so that it may be more easily reviewed and analyzed by team members. Progress in skill acquisition is measured in a variety of ways, for example, by recording the

Progress in skill acquisition is measured in a variety of ways, for example, by recording the number and type of intervention a person needs to perform the steps of a given activity. Progress may be measured in terms of moving from more severe to minimal prompts (prompt fading), by the reduction of the number of prompts or corrections or by tracking the rate at which steps are performed without intervention. Less quantitative methods of assessing pro-gress are “quality of life” measures. Does

intervention. Less quantitative methods of assessing pro-gress are “quality of life” measures. Does the resident’s behavior allow him to engage in activ-ities that bring him pleasure and satisfaction, for example, eating out at restaurants, going to the movies, going to parties, and taking a vacation? Can a resident who formerly needed one-to-one supervision when out in the community now go out with others? Can a resident who used to sit in the back seat of a vehicle because of safety con-cerns

others? Can a resident who used to sit in the back seat of a vehicle because of safety con-cerns now sit up front with the driver if he prefers? The answers to questions like these provide another equally important and valid measure of treatment outcome.

**Qualifications of Treatment Providers**  Benhaven’s residential program is licensed by the Connecticut Department of Developmental Dis-abilities and must adhere to that agency’s licens-ing requirements, including requirements in the area of staff training. While not required, many management and administrative staff hold licen-sures and degrees in areas such as special educa-tion, psychology, sociology, and social work. Direct line personnel are not required to hold specific credentials but

sociology, and social work. Direct line personnel are not required to hold specific credentials but receive extensive and ongoing training in autism and teaching methods and philosophies as well as other areas vital for supporting people with disabilities, for example, CPR, first aid, medication administration, and health and safety. What distinguishes Benhaven’s treatment pro-cedures from others is not so much the treatments themselves (which are widely accepted and established approaches and

is not so much the treatments themselves (which are widely accepted and established approaches and strategies in the field of autism) but, rather, other factors that impact the efficacy of treatment. First of all, program plans are individualized in reality, not just on paper. One of Benhaven’s primary treatment philosophies is that there must be an adequate number of well-trained staff to carry out these programs so that residents receive individualized training for skill acquisition and

out these programs so that residents receive individualized training for skill acquisition and maintenance. For a residential program, Benhaven manages to maintain a remarkably high staff ratio, for example, four staff to six residents during programming time in some settings and in one setting two staff to two residents. Strategies for teaching skills and addressing behavior problems are developed to best meet the needs and suit the learning style of the individual; “one size fits all” is never

to best meet the needs and suit the learning style of the individual; “one size fits all” is never the approach. Treatment is also enhanced by the relative lon-gevity and retention of skilled and motivated staff at all levels. Benhaven’s residential administration has been in place for between 30 and 40 years; senior management of the seven homes averages over 18 years of employment at Benhaven. Advanced direct support staff constitute over 80% of the total supporters, and the average employment

direct support staff constitute over 80% of the total supporters, and the average employment among all direct support staff is well over 5–10 years. In addition, and perhaps most importantly, staff receive ongoing training in groups, in team meetings, and as individuals. Staff performance is monitored through formal and informal observation, with feedback and follow-up provided. All staff, full- and part-time, participate in a staff development process that provides people with an opportunity

and part-time, participate in a staff development process that provides people with an opportunity to receive performance feedback on a quarterly basis. For-mal staff evaluations are conducted annually, at which time performance goals are established and reviewed.

**Beta-Adrenergic Blockers**  **Definition**  Beta blockers remain essential pharmacological agents in the management and treatment of cardio-vascular and endocrineconditions. With little risk of dependence and high target selectivity, recent clin-ical trials have investigated the efficacy of beta blockers alongside current treatment guidelines for intellectual disabilities and psychiatric conditions where first-line therapies have failed. Current research suggests that beta blockers may

conditions where first-line therapies have failed. Current research suggests that beta blockers may alleviate the motor and psychiatric symptoms present in intellectual disabilities through CNS or peripheral blockade of sympathetic hyperactivity (Connor et al. 1997). As such, beta blockers may act as a potential adjuvant therapy towards the management and treatment of autism spectrum disorders (ASD). Among autistic patients, 30% exhibit anxiety, irri-tability, and self-injury comorbidities,

(ASD). Among autistic patients, 30% exhibit anxiety, irri-tability, and self-injury comorbidities, which previ-ous pharmacological studies targeted for treatment. Recent studies showed beta blockers, particularly propranolol, reduced these comorbidities, sparking new interest examining beta blockers effects on the language and cognitive deficits in ASD (Sagar-Ouriaghli et al. 2018). Propranolol is a nonselective beta blocker used extensively to treat test and performance anx-iety and

is a nonselective beta blocker used extensively to treat test and performance anx-iety and cardiovascular disease. Unlike other nonselective beta blockers, such as nadolol, propranolol is a lipophilic beta blocker that blocks both the central nervous system and peripheral β-adrenergic receptors allowing for further modulation of cognitive functions (Beversdorf et al. 2002). Furthermore, propranolol is well-tolerated by children and exhibits less unwanted side effects compared to other

propranolol is well-tolerated by children and exhibits less unwanted side effects compared to other pharmaceutical agents (Deepmala and Agrawal 2014). Many ASD patients show a decrease connectivity between brain regions involved in language, social, and motor skills (Koshino et al. 2005). Previous studies using propranolol showed ASD children exhibited less anxiety and more social and adaptive behaviors (Ratey et al. 1987). Further analysis demonstrated propranolol’s efficacy improving word

behaviors (Ratey et al. 1987). Further analysis demonstrated propranolol’s efficacy improving word fluency, conversation problem solving, and conversational reciprocity in ASD patients (Zamzow et al. 2016). In addition, ASD patients show deficits in phono-logical processing during social and motor tasks (Schmidt et al. 2008). A functional magnetic reso-nance imaging (fMRI) of 10 autistic patients showed an increase in neuronal networks with pro-pranolol administration during phonological tasks

showed an increase in neuronal networks with pro-pranolol administration during phonological tasks compared to nadolol (Narayanan et al. 2010). Although social and cognitive deficits remain the focus of autism research, hypersexuality remains a prevalent comorbidity among ASD patients leading to social embarrassment and repercussions with limited pharmacological inter-ventions available (Deepmala and Agrawal 2014). However, a recent case report of an adolescent ASD patient demonstrated decreased

Agrawal 2014). However, a recent case report of an adolescent ASD patient demonstrated decreased hypersexual behavior upon administration of propranolol (Deepmala and Agrawal 2014). Although the mechanism behind the observed decreased hypersexual behavior remains unknown, current literature suggest that propranolol decreases tes-tosterone and antagonizes serotonin receptors in the brain (Rosen et al. 1988). Overall, these find-ings encourage future investigations comparing the efficacy of

et al. 1988). Overall, these find-ings encourage future investigations comparing the efficacy of different beta blockers in managing ASD and the mechanism behind their effects.

**Bettelheim, Bruno**  **Short Biography**  A highly controversial figure in the history of autism, Dr. Bettelheim was born in Austria and trained in Art History. His work in history led him to the study of psychology. He became a refu-gee from the Nazis and moved to the United States. He eventually moved to Chicago where he became a professor at the University of Chicago (teaching there from 1944 to 1973). He had some psychoan-alytic training in Vienna and served, in Chicago, as the Director

to 1973). He had some psychoan-alytic training in Vienna and served, in Chicago, as the Director of the University of Chicago’s Sonia Shankman Orthogenic School – a center for treat-ment of severely disturbed children. He made many claims for successful treatment but did so within the context of claiming that parents were involved in the pathogenesis of autism (a theory now long discredited). His early work on the topic was widely cited, although it is not clear exactly how many children with

early work on the topic was widely cited, although it is not clear exactly how many children with autism he actually saw. The diagnoses of autism in his patients have also been questioned. His popularization of the concept of the “refrigerator mother” traumatized a generation of parents who were told they were responsible for their child’s autism. Questions were raised about possible plagiarism in his scholarly writing and the validity of his work.

**Better OutcOmes and Successful Transitions for Autism (BOOST-A) Program, The**

**Definition**  The Better OutcOmes & Successful Transitions for Autism (BOOST-ATM) is an autism-specific, web-based program that aims to prepare adoles-cents on the autism spectrum for the transition from high school to further education, training, or employment. The BOOST-ATM supports adolescents on the autism spectrum to develop career pathways and set goals that enhance their employment-readiness skills. The program con-sists of four modules, as outlined in Fig. 1. Module 1, About Me,

skills. The program con-sists of four modules, as outlined in Fig. 1. Module 1, About Me, supports career aware-ness by engaging the adolescent in the following six activities:

*   “Interests”: The adolescent completes a question-naire and is provided with a summary of their key areas of interest related to employment.
*   “Strengths”: The adolescent reflects on their areas of strength in the fields of technology, science, physical activities, and arts.
*   “Work Preferences”: The adolescent considers the types of work environments they might prefer. They explore factors such as sensory input (e.g., noise and movement), social inter-actions, and task routines.

*   “Training after School”: The adolescent states their preferred post-school training pathway. For example, on-the-job training or an appren-ticeship; a vocational training center; or tertiary education at university or college.
*   “My skills”: The adolescent explores their current level of performance in activities of daily living, and their participation in commu-nity activities.

*   “Learning Styles”: The adolescent describes their preferred learning style, which may be one or more of the following: reading, writing, hearing, seeing, or doing.

Module 2, My Team, supports the adolescent and their caregiver to identify people who might be best placed to participate in their transition planning, asking them to come together to form a team. In addition, this module provides potential strategies for the adolescent to contribute as actively as possible to the team meetings in a way that they feel comfortable with, as this has been shown to promote increased self-determination (Hendricks and Wehman 2009; Martin and Williams-Diehm 2013).

promote increased self-determination (Hendricks and Wehman 2009; Martin and Williams-Diehm 2013). Module 3, First Meeting, involves a team meeting that keeps the adolescent at the center of all decision-making. The program provides recommendations for job pathways that leverage the adolescent’s strengths. The team decides on a few pathways on which to develop goals. For each goal, the team identifies the actions needed, peo-ple responsible, and timeframes for completion. Goals are suggested by

the actions needed, peo-ple responsible, and timeframes for completion. Goals are suggested by the program and encour-age the adolescent to gain real-life experiences; e.g., acquiring a part-time job, doing a work experience, finding a mentor, getting more infor-mation about potential careers, and developing life skills. The fourth module, My Progress, is completed at subsequent team meetings. The team reflects on the progress toward each goal, and amends and updates the goals and job pathways,

team reflects on the progress toward each goal, and amends and updates the goals and job pathways, as needed. This module encourages the development of resilience through positive reflection, guiding the adolescent to reframe challenging experiences as opportunities for development, rather than failures. Since the program is designed to build self-determination, the adolescent is encouraged to increase their level of involvement at each subsequent meeting. The aim is that the adolescent will

increase their level of involvement at each subsequent meeting. The aim is that the adolescent will eventually lead the meetings and experience a greater sense of control over their plans for the future.

**Historical Background**  Adolescents on the autism spectrum have numerous strengths; however, many have difficulty transitioning to post-school employ-ment or higher education (Australian Bureau of Statistics 2012). Furthermore, many people on the autism spectrum are often underemployed or in positions that do not reflect their education level or abilities (Hendricks 2010; Müller et al. 2003). There is increasing recognition of the many strengths people on the autism spectrum bring to the

There is increasing recognition of the many strengths people on the autism spectrum bring to the workplace, including low absenteeism, reli-ability, and excellent recall for information on topics related to their special interests (Mottron 2011; Hillier et al. 2007; Hagner and Cooney 2005). Transition planning enhances post-school outcomes in adolescents with disabilities (King et al. 2005; Wei et al. 2016), but most existing transition planning programs are not autism-specific and may not meet

al. 2016), but most existing transition planning programs are not autism-specific and may not meet the needs of adoles-cents on the autism spectrum. Therefore, the cur-rent program was developed specifically for adolescents on the autism spectrum to improve transition planning outcomes for this group.

**Rationale or Underlying Theory**  The program was developed based on three frameworks: self-determination theory, a strengths-based approach, and a technology-based approach. Adolescents with high self-determination are more likely to have post-school employment (Test et al. 2009). The strengths-based approach capitalizes on an individual’s expertise and special interests to enhance perfor-mance and promote changes in self-determination (Patten Koenig and Hough Williams 2017).

perfor-mance and promote changes in self-determination (Patten Koenig and Hough Williams 2017). Technology-based interventions are effective in improving outcomes for people on the autism spectrum in areas such as communication, social skills, and emotional recognition (Grynszpan et al. 2014).

**Goals and Objectives**  Two pilot studies (Pilots A and B) were conducted to determine the feasibility and acceptability of the program (Hatfield et al. 2017b). The effective-ness of the program was then determined in a quasi-randomized controlled trial (RCT) (Hatfield et al. 2016; Hatfield et al. 2017a). Finally, a process evaluation identified the enablers and barriers related to using the program (Hatfield et al. 2016, 2018). The process evalua-tion involved collecting qualitative and

program (Hatfield et al. 2016, 2018). The process evalua-tion involved collecting qualitative and quantita-tive feedback from the intervention group participants in the RCT.

**Treatment Participants**  Pilot A consisted of six adolescents on the autism spectrum who trialed the program with their parents and the professionals in their team. Pilot B obtained the feedback from 88 allied health professionals via an online survey. Participants in the RCT and process evaluation were 94 ado-lescents on the autism spectrum from Australia. The intervention group participants (n ¼ 49) received the program and the control group (n ¼ 45) participated in usual transition

(n ¼ 49) received the program and the control group (n ¼ 45) participated in usual transition planning practices at their school.

**Treatment Procedures**  Participants were screened for eligibility and allocated to groups using an alternate allocation method. Outcome measures were completed on enrolment and then 12 months post-intervention, to allow the participants to complete all modules of the program and make progress on their transition planning goals. Outcomes included self-determination, career planning and exploration, quality of life, environmental sup-port, and domain-specific self-determination. Data were

quality of life, environmental sup-port, and domain-specific self-determination. Data were collected from parents and adolescents. Curtin University Human Research Ethics Committee and relevant school sectors provided ethics approval. All participants aged 18+ years provided informed consent and adolescents provided informed assent. For the RCT, normality of the data was determined using the Kolmogorov-Smirnov test. Effectiveness was determined using the independent samples t-test and/or

Kolmogorov-Smirnov test. Effectiveness was determined using the independent samples t-test and/or Mann-Whitney U test. An intention-to-treat approach was used, along with the last obser-vation carried forward method.

**Efficacy Information**  Results from the pilot studies indicated that the program was an acceptable and feasible program (Hatfield et al. 2017b). Modifications to the pro-gram were made based on the feedback from participants. Changes included the conversion to a web-based program to improve the usability of the program; a reduction in the content length of the modules; and enhanced use of visuals, such as videos and graphics. The RCT results indicated significant differ-ences in favor of the

such as videos and graphics. The RCT results indicated significant differ-ences in favor of the intervention group in three areas: (i) opportunity for self-determination at home (parent report); (ii) career exploration (parent and adolescent report); and (iii) transition-specific self-determination (parent report) (Hatfield et al. 2017a). There were no significant differences between groups for the summary scores of the remaining outcomes. Results from the process evaluation indicated that the

summary scores of the remaining outcomes. Results from the process evaluation indicated that the program enabled adolescents on the autism spectrum to feel empowered because of the strengths-focus of the program (Hatfield et al. 2018). The program supported parents and adolescents to overcome inertia and take action by providing a structured process to follow, and providing new insights into potential career pathways. Participants were less likely to report benefits from using the program when

career pathways. Participants were less likely to report benefits from using the program when they did not have a “champion” in their team. The champion was typically a parent or professional taking charge and moving the transition planning process forward.

**Outcome Measurement**  The primary outcome of the RCT was self-determination, measured by the AIR Self-Determination Scale (AIR). The four secondary outcomes included: (i) Career planning and exploration, measured by the Career Development Inventory – Australia – Short Form (CDI-A); (ii) Quality of life, measured by the Per-sonal Wellbeing Index-School Children (PWI-SC); (iii) Environment support, measured by the Learning Climate Questionnaire (LCQ); and (iv) Domain specific

Environment support, measured by the Learning Climate Questionnaire (LCQ); and (iv) Domain specific self-determination, measured by the Transition Planning Objectives Scale.

**Qualifications of Treatment Providers**  The program is appropriate for use by trusted adults who support the adolescent in transition planning including parents, educators, and allied health professionals, such as occupational therapists, psychologists, and speech pathologists. No formal training, certification, or level of qualification is required.

**Bias in Assessment Instruments for Autism**  **Introduction**  Standardized diagnostic tools are critical in terms of assessing Autism Spectrum Disorder (ASD). There is an increasing interest in how culture, sex, social economic status, and other factors affect the performance of concurrent gold standard instru-ments for the purpose of identifying autism spec-trum disorder (ASD). While the performance of, for example, the Autism Diagnostic Observation Schedule (ADOS) (Rutter et al. 2012) and

of, for example, the Autism Diagnostic Observation Schedule (ADOS) (Rutter et al. 2012) and the Autism Diagnostic Interview (ADI-R) (Rutter et al. 2003) performs well in identifying individ-uals suspected of ASD, and especially when used to complement each other, little is known on the performance of the ADOS and the ADI-R in dif-ferent cultures, ethnicities, and between sexes. Most of the instruments created for the purpose of identifying ASD are created and validated in the USA and Europe.

created for the purpose of identifying ASD are created and validated in the USA and Europe. However, they are often translated into a large range of languages for use in different cultures and ethnicities, without conducting validation studies of the instruments. As a result, it could be discussed how culture, ethnicity, sex, and the translation itself affect test performance of instruments. Even considering how instruments work between sexes are rarely examined in validation studies of

Even considering how instruments work between sexes are rarely examined in validation studies of instruments. In terms of parent report, it is likely to believe that culture could affect how parents regard various elements of behavior and development, and how parents rate their boy or girl in terms of endorse-ment of, for example, behaviors or development.

**Current Knowledge**  While we do believe that some of the issues raised could potentially bias diagnostic instruments, little has been reported on ASD-specific diagnostic instruments in terms of potential biases and test performance (Volkmar et al. 2014). A recent study by Vanegas et al. (2016) revealed that the sensitiv-ity and specificity of the ADI-R were moderate, but lower than previously reported values. However, currently we have little information on test perfor-mance from different

reported values. However, currently we have little information on test perfor-mance from different cultures, ethnicities, taking sex also into consideration. Behavioral, develop-mental and temperamental differences could ulti-mately affect the performance of screening and diagnostic instruments (Dworzynski et al. 2012; Macari et al. 2017; Øien et al. 2017). In terms of culture, research has revealed cross-cultural preva-lence differences (Elsabbagh et al. 2012), and cul-ture is regarded to have

cross-cultural preva-lence differences (Elsabbagh et al. 2012), and cul-ture is regarded to have a great impact on how ASD is perceived, diagnosed, and treated across cultures (Volkmar et al. 2014). In the western world, early diagnosis is regarded as paramount for early inter-vention and access to services. It is not sure to what extent, but a diagnosis of ASD could in other cultures impair the access to treatment and services. A great example of how ASD symptomatology could be affected by

access to treatment and services. A great example of how ASD symptomatology could be affected by culture is found in eye contact. As impairment or atypicalities in eye contact is regarded as a core symptom of ASD, avoiding eye contact in some eastern cultures are regarded as appropriate and polite (Volkmar et al. 2014). Non-autism-specific research, among the Sami population of Norway (ethnic minority), revealed that disorders such as ASD and other mental health disorders were not prevalent as

revealed that disorders such as ASD and other mental health disorders were not prevalent as in the larger non-ethnic majority of Norway (Nergård 2006).

**Future Directions**  As there is a pressing need to understand how culture, ethnicity, sex, and other factors affect test performance of a range of different diagnostic instru-ments, it is necessary to focus on implemen-tation of validation studies when diagnostic instruments are translated. While translating and back translating is regarded as necessary, trans-lations of instruments can still incorporate word-ing or translations that might not be suitable for the given culture, ethnicity,

incorporate word-ing or translations that might not be suitable for the given culture, ethnicity, or language. Future studies should also examine the performance in sex separately, aiming at exploring if there are different sensitivity and specificity for males and females, respectively. One solution for future research should be to conduct meta-analyses of test performance of the various diagnostic instru-ments across cultures, ethnicities, and social eco-nomic statuses, taking sex into

instru-ments across cultures, ethnicities, and social eco-nomic statuses, taking sex into consideration. This could show if the diagnostic instruments perform differently in different conditions, and it could also indicate in which areas the discrepancies arise from. Increasing knowledge on how to iden-tify ASD in third world countries and cultures is of highest importance, and current diagnostic instru-ments are often too expensive for many cultures and countries. Focusing on the development

instru-ments are often too expensive for many cultures and countries. Focusing on the development of community-based identification of ASD in areas with limited resources and utilizing less compre-hensive, but culture-sensitive instruments could potentially decrease differences in prevalence and differences across cultures.

**Bilingualism and Language Development in Children with Autism Spectrum Disorders**

**Definition**  Bilingually exposed children with autism spec-trum disorders (ASD) are those who are exposed to two languages from early ages. These children are typically being raised in bilingual families and/or bilingual communities. Bilingualism is a multidimensional characteristic that is influenced by multiple factors such as sociolinguistic context (e.g., majority or minority language), age of acquisition, and amount of exposure or usage (for children) or proficiency (for older children

of acquisition, and amount of exposure or usage (for children) or proficiency (for older children and adults), among others (Surrain and Luk 2017). Additionally, socioeconomic differences are linked to bilingual status in some contexts. These factors need to be kept in mind when interpreting and comparing research findings (Kay-Raining Bird et al. 2016).

**Historical Background**  Parents of children with ASD are commonly advised to use only one language when interacting with their children. This often stems from beliefs that bilingualism might be too challenging or con-fusing for the child and hinder his/her language development (Yu 2013). However, evidence does not support this claim (for reviews see Drysdale et al. 2015; Lund et al. 2017). Research with children under age 6 has repeatedly shown no additional language delays caused by

Research with children under age 6 has repeatedly shown no additional language delays caused by bilingual exposure. Importantly, in the long term, bilingual-ism can provide social and vocational advantages. For children from bilingual families and commu-nities, it also provides opportunities to maintain familial bonds (Yu 2013) and rich social and lin-guistic input (Hudry et al. 2018). In situations of highly proficient bilingualism, it may even pro-vide advantages in some executive function

of highly proficient bilingualism, it may even pro-vide advantages in some executive function skills (Gonzalez-Barrero and Nadig 2017, 2019b; Nadig and Gonzalez-Barrero 2019).

**Current Knowledge**  **Bilingual Language Development in Toddlers and Preschoolers**  Research with toddlers and preschool bilingual children with ASD has shown that these children reach language milestones, such as first words and onset of first sentences, at a similar age relative to their monolingual peers with ASD (Hambly and Fombonne 2012; Ohashi et al. 2012; Valicenti-McDermott et al. 2013). Furthermore, their early vocabulary and communication skills develop at a similar rate to that of

Furthermore, their early vocabulary and communication skills develop at a similar rate to that of children with ASD exposed to only one language (Dai et al. 2018; Ohashi et al. 2012; Petersen et al. 2012; Reetzke et al. 2015). Most studies on bilingualism and ASD including children of this age have relied primarily on parent report, which is a valid measure to use early in development (e.g., Hambly and Fombonne 2012; Reetzke et al. 2015). However, there is a lack of studies examining the

Hambly and Fombonne 2012; Reetzke et al. 2015). However, there is a lack of studies examining the language development of school-age bilingual children with ASD. It is important to extend investigations to this older age group as more sophisticated language skills are developed during the school years when lan-guage is used as a tool for learning.

**Bilingual Language Development at School Age**  Only a few studies have directly examined the language skills of school-age bilingual children with ASD (Gonzalez-Barrero and Nadig 2018, 2019a; Meir and Novogrodsky 2019). Impor-tantly, unlike early development, at school age it is well established that typically developing monolinguals outperform bilinguals on standard-ized language tests administered in one language (Bialystok et al. 2010), which is linked to bilin-guals’ language exposure

in one language (Bialystok et al. 2010), which is linked to bilin-guals’ language exposure being split between lan-guages (Thordardottir 2011). How do bilingual children with autism, with-out intellectual disability, fare at school age? Gonzalez-Barrero and Nadig (2019a) assessed the vocabulary and grammatical skills of 13 bilin-gual and 13 monolingual school-aged children with ASD (age range 5–10 years). Children were recruited in Montreal, Quebec, Canada, a multi-cultural city where the use

years). Children were recruited in Montreal, Quebec, Canada, a multi-cultural city where the use of French and English is a common practice and both languages are official languages of the country. Children were speakers of French, English, Spanish, or the com-bination of two of these languages. To qualify as bilingual in this study, children had to meet a rigorous three-step criterion including amount of exposure above 20% to two languages, profi-ciency judgments from parents, as well as

amount of exposure above 20% to two languages, profi-ciency judgments from parents, as well as com-pletion of tasks in both languages. Bilinguals and monolinguals did not differ with respect to chro-nological age, nonverbal IQ, maternal education, dominant language, or autism symptoms, and a similar percentage of children in each group had language impairment. Standardized tests of vocabulary and grammar were administered to compare the performance of the bilingual children with ASD relative to

grammar were administered to compare the performance of the bilingual children with ASD relative to their monolingual peers with ASD. Results concerning receptive vocabulary skills in the bilingual children’s dominant lan-guage showed a trend where monolingual chil-dren exhibited higher scores relative to bilinguals. Yet, most of the bilingual children with ASD performed within the average range of the test (within 1 SD above or below the test mean). Results from the expressive grammatical test

the test (within 1 SD above or below the test mean). Results from the expressive grammatical test mirrored those found for vocabulary skills; there were no significant differences between the bilinguals’ dominant language scores and those of the monolingual group, although there was a ten-dency in the bilingual group to score below the average range on this measure. These findings demonstrate the same patterns found in typically developing bilinguals (Bialystok et al. 2010) and highlight the key

patterns found in typically developing bilinguals (Bialystok et al. 2010) and highlight the key role that amount of language exposure plays in child language abilities, in autism (Gonzalez-Barrero and Nadig 2018) as in typical development.

Hoang et al. (2018) elicited short narratives in a picture sequencing task from a subsample with similar characteristics to the participants just described (n ¼ 20, including 5 bilinguals and 5 monolinguals with ASD). As reported in Gonzalez-Barrero and Nadig (2019a), monolin-guals had higher receptive vocabulary scores than bilinguals. Yet, when using language func-tionally to tell a narrative, bilinguals produced significantly more utterances than monolinguals. With respect to narrative

bilinguals produced significantly more utterances than monolinguals. With respect to narrative skills, bilinguals and monolinguals did not differ in macrostructure (e.g., sequencing of events and coherence), micro-structure (e.g., use of referential terms and con-junctions), or elaborations (e.g., sound effects, character speech). Baldimtsi et al. (2016) used a similar study design to examine narrative produc-tion in Greek-speaking bilinguals and monolin-guals with and without autism and found

produc-tion in Greek-speaking bilinguals and monolin-guals with and without autism and found that bilingual children with ASD outperformed mono-linguals with ASD in some narrative skills. Though preliminary given very small sample sizes, these converging findings suggest that lower standardized language test scores in bilin-gual children with autism do not reflect a reduced ability to use that language functionally. This body of work provides information to clinicians working with this population

functionally. This body of work provides information to clinicians working with this population as it dem-onstrates that many children with ASD can become bilingual when adequate language expo-sure is provided (Gonzalez-Barrero and Nadig 2018). Additionally, in contrast to language devel-opment during the early years, it is expected that at school age bilinguals will underperform relative to their monolingual peers on standardized lan-guage tests, which calls for caution when assessing

to their monolingual peers on standardized lan-guage tests, which calls for caution when assessing bilingual children with ASD using monolingual norms (Thordardottir 2015).

**Future Directions**  With the increasing rate of bilingualism around the world (Surrain and Luk 2017), more research is needed to better understand and describe the language development trajectories of children with ASD being raised in bilingual families and societies. Although there is a growing interest in bilingualism and autism, and some studies have recently been conducted examining the narrative and syntactic abilities in this population (e.g., Hoang et al. 2018; Meir and Novogrodsky

narrative and syntactic abilities in this population (e.g., Hoang et al. 2018; Meir and Novogrodsky 2019), more studies are needed in language domains such as phonology and pragmatics, as well as comparing different contexts of bilingualism. A review indicated that many practitioners would like to support bilingualism in children with developmental disabilities when relevant for families but that the lack of bilingual special-ized services and educational opportunities is a major obstacle

that the lack of bilingual special-ized services and educational opportunities is a major obstacle (Marinova-Todd et al. 2016). Baker et al. (2018) offer a potential solution through dual immersion educational programs for children with autism, and with respect to how a child’s heritage language can be incorporated in therapy, see ▶“Heritage Language Use for Intervention in Autism”. The development of bilingual services and research evaluating them is a critical area for future work. In sum,

of bilingual services and research evaluating them is a critical area for future work. In sum, the available evidence suggests that bilingualism is a possible outcome for children with ASD and that bilingually exposed children with ASD show globally similar language devel-opment trajectories to their monolingual peers with ASD. Thus, parents of bilingual children should be encouraged to use the language in which they can better interact with their child, which could facilitate the delivery of

language in which they can better interact with their child, which could facilitate the delivery of parent-implemented interventions (Lim et al. 2019) and allow parents to provide quality input that sup-ports language development.

**Biological Motion**  **Definition**  Biological motion refers to the movements of humans or animals including eye, face, and full body motion. Typical observers exhibit robust sensitivity to biological motion cues provided by other people. However, disrupted sensitivity to biological motion, at the behavioral and neural level, is emerging as a hallmark of autism spectrum disorders (ASD). The lack of tuning to such socially relevant information may reflect some of the pathognomic social

The lack of tuning to such socially relevant information may reflect some of the pathognomic social deficits associ-ated with ASD.

**Biomarker Research in Autism Spectrum Disorder**  **Definition**  A biological marker (biomarker) is defined as a characteristic that is objectively measured and evaluated as an indicator of normal biological processes, pathogenic processes, or pharma-cologic responses to a therapeutic intervention (Biomarkers Definitions Working 2001). Although the term biomarker is often associated with bio-logical processes, many data modalities can be used to objectively measure relevant processes, such as

processes, many data modalities can be used to objectively measure relevant processes, such as genes, metabolites, brain structure and function, and overt behaviors. In fields like oncol-ogy, biomarkers have been categorized into meaningful subtypes, and similar efforts to clas-sify biomarkers in neuropsychiatry are in progress (Davis et al. 2015; McPartland 2016). Through meaningful subtypes, biomarkers can serve a mul-titude of purposes in autism spectrum disorder (ASD) research and treatment.

can serve a mul-titude of purposes in autism spectrum disorder (ASD) research and treatment. Diagnostic biomarkers are discrete, and objec-tive measures of whether or not an individual has ASD and their identification have been a long-standing objective in the field. Diagnostic biomarkers should not overlap with other condi-tions, reflected in the sensitivity and specificity of biomarkers (Davis et al. 2015). Screening biomarkers measure diagnostic risk status and potentially measure processes

et al. 2015). Screening biomarkers measure diagnostic risk status and potentially measure processes prior to observable behavioral symptoms. Screening bio-markers would allow for intensive early intervention for individuals which have been shown to improve the prognosis of ASD (Dawson et al. 2010; Estes et al. 2015; Lovaas 1987; Smith et al. 2000). Stratification biomarkers determine meaning-ful subgroups of individuals to predict or evaluate treatment (Loth et al. 2016a). Stratification

subgroups of individuals to predict or evaluate treatment (Loth et al. 2016a). Stratification bio-markers, for example, may indicate a group of children with ASD who may be likely to respond to a specific treatment. Early efficacy biomarkers indicate whether a treatment is altering targeted symptoms or the processes underlying those symptoms (McPartland 2016). In autism, an early efficacy biomarker may reveal symptomology changes from a treatment before they are observable in clinical observation

may reveal symptomology changes from a treatment before they are observable in clinical observation or caregiver report, the current measures used in clinical trials of ASD. Target engagement biomarkers measure whether an intervention is affecting the intended process (Zhao et al. 2015). For example, in autism, a target engagement biomarker might assist in determining whether a specific medica-tion is affecting neural activity in the intended brain region. These biomarker subtypes strive to

is affecting neural activity in the intended brain region. These biomarker subtypes strive to improve the understanding of autism and foster precision-medicine approaches in the diagnosis and treat-ment of autism (Varcin and Nelson 2016). Determining which biomarker subtype is under research will guide study designs and impact future applicability. Nevertheless, before the field can reliably utilize biomarkers, key chal-lenges in the identification of biomarkers must be addressed in future study

biomarkers, key chal-lenges in the identification of biomarkers must be addressed in future study designs.

**Historical Background**  Biomarker identification and validation in ASD, a condition characterized by two domains of core symptoms, including impairments in social com-munication and presence of restricted and repeti-tive behaviors (American Psychiatric Association 2013), hold promise in subtyping the heteroge-neous neurodevelopmental disorder and guiding personalized treatments. In other biomedical fields, such as oncology, biomarkers have been successfully implemented to inform personalized

fields, such as oncology, biomarkers have been successfully implemented to inform personalized treatments as well as measure processes involved in the diagnosis, prognosis, and prevention of various cancers (Nalejska et al. 2014). For exam-ple, treatments for different forms of cancer are based on specific genetic mutations (Kalia 2015). Despite significant biomarker discovery efforts in ASD, biomarkers are not yet readily applied in the treatment and diagnosis of ASD. Clinical judgment of

biomarkers are not yet readily applied in the treatment and diagnosis of ASD. Clinical judgment of observable behaviors remains the primary clinical tool applied in ASD. The diag-nostic criteria, as outlined in the Diagnostic and Statistical Manual of Mental Disorders, fifth edi-tion, consist of a checklist of behaviors in which a tally of symptoms across domains constitutes as a diagnosis (American Psychiatric Association 2013). The strongest and most reliable diagnostic tools include a parent

Psychiatric Association 2013). The strongest and most reliable diagnostic tools include a parent interview (Lord et al. 1994) and play-based observational assessment (Lord et al. 2012). Furthermore, clinicians determine the best course of treatment and prognoses based on the results of these standardized behavioral assessments and subjective evaluation. Outcomes, from the individual level to multisite clinical trials, are often reported by parent and teacher report or behavioral observation.

clinical trials, are often reported by parent and teacher report or behavioral observation. The applications of these methods have significantly advanced autism, used interchangeably with ASD, research, and these clinical tools can be administered reliably. Nevertheless, the nature of these methods remains remarkably similar to the methods used by Asperger (1944) and Kanner (1943) decades ago. Biomarker discovery for autism remains in its infancy. The first steps in identifying potential

ago. Biomarker discovery for autism remains in its infancy. The first steps in identifying potential biomarkers are operationalizing the definition for the term “biomarker” and describing various sub-types. Challenges to biomarker research must be highlighted so that future research endeavors can determine the best course of action to address them in study designs. Currently, national and international studies are underway and address many of these challenges to biomarker research, and studies

studies are underway and address many of these challenges to biomarker research, and studies with large cohorts show promising signs of biomarker discovery in ASD. Future studies must consider the objectivity, sensitivity, and scalability of the methodologies used to mea-sure biomarkers to ensure a large public health impact.

**Current Knowledge**  **Specificity of Biomarkers**  It is well-established that autism is an extremely heterogeneous disorder containing a large varia-tion in core diagnostic features and associated characteristics, such as cognitive and language ability. Therefore, the search for biomarkers of ASD may prove elusive for potential underlying etiologies. Instead, a more effective approach may be to research potential biomarkers in rela-tion to specific functional processes or symptom indices,

to research potential biomarkers in rela-tion to specific functional processes or symptom indices, as outlined by the Research Domain Criteria approach (http://www.nimh.nih.gov/rese arch-priorities/rdoc/), rather than in relation to diagnostic status. Many features present in autism are found in other disorders; for example, repeti-tive and restricted behaviors are present in obses-sive compulsive disorder, and social dysfunction is present in schizophrenia spectrum disorders. Often, treatment

disorder, and social dysfunction is present in schizophrenia spectrum disorders. Often, treatment goals are centered around varia-tion in a specific area as opposed to diagnostic status more broadly. Biomarkers that measure changes in specific functional domains may prove extremely useful in these cases as opposed to biomarkers measuring diagnostic status.

**Individual Versus Composite Biomarkers**  Generally, biomarker studies in ASD and other neurodevelopmental disorders focus on utilizing a specific measure as a biomarker. For example, a study may focus on activation in a specific brain region associated with social behavior. Yet, the complexity of biological processes that give rise to social behavior, as well as the potential for compensatory mechanisms within these pro-cesses, and the well-known heterogeneity in autism complicate the

mechanisms within these pro-cesses, and the well-known heterogeneity in autism complicate the potential utility of a single biomarker. It may be necessary to develop bio-markers reflecting multiple measures. An individ-ual’s profile as measured through a composite from multiple biomarkers, either within one data modality or across data modalities, may provide more relevant information for prognoses and treatment compared to a single biomarker.

**Developmental Considerations**  Autism is a developmental disorder wherein early-life symptoms influence experience as well as experience-expectant biological processes (Dawson et al. 2005). Different biological systems may have varying developmental trajectories. Therefore, in individuals with ASD, the patterns of brain activity represent an interplay between early-occurring neural atypicalities and subse-quent developmental sequelae. Consequently, biomarker studies conducted at different

and subse-quent developmental sequelae. Consequently, biomarker studies conducted at different develop-mental points may result in disparate findings. A key factor in biomarker discovery in autism will be understanding biomarkers across develop-ment. To address this factor, biomarker research must be conducted with sufficiently large samples to analyze developmental effects or performed in tightly developmentally constrained studies.

**Differences At the Group and Individual Level**  In autism research, and neurodevelopmental dis-orders more generally, studies report findings as differences in means between groups of indi-viduals. These findings often reflect a shift in the distribution of values between the groups on a biomarker parameter. Thus, there is little informa-tion about the biomarker at the individual level unless the value of the biomarker is true for every individual with ASD. Advancing translational goals of

the value of the biomarker is true for every individual with ASD. Advancing translational goals of biomarkers requires designing studies to evaluate effects at the individual level or individ-ual variation on specific characteristics. Through these study designs, biomarkers may, at the indi-vidual level, provide relevant information.

**Current Efforts in Biomarker Discovery**  While significant challenges to biomarker discov-ery in ASD are present, many are addressed through studies developed by collaborative con-sortia. Researchers are working together to develop protocols for multiple data modalities to identify biomarkers in autism and disseminate these methodologies. Through large cohorts or longitudinal designs, oftentimes both, these stud-ies address many of the challenges to biomarker research in ASD and offer the

both, these stud-ies address many of the challenges to biomarker research in ASD and offer the first opportunities to review biomarkers in autism with sufficiently large sample sizes. The largest ongoing effort toward autism bio-marker measure development is the European Autism Interventions – A Multicenter Study for Developing New Medications (EU-AIMS) Lon-gitudinal European Autism Project (LEAP). The multisite, multidisciplinary study aims to discover stratification biomarkers for ASD.

(LEAP). The multisite, multidisciplinary study aims to discover stratification biomarkers for ASD. Throughout the study, participants are characterized through their symptom profile, comorbidities, quality of life, adaptive functioning, neurocognitive profile, brain structure and function, biochemical bio-markers, prenatal environmental risk factors, and genomics (Loth et al. 2016b). For this study, val-idation of biomarkers will be carried out similar to other biomedical fields in which biomarkers

val-idation of biomarkers will be carried out similar to other biomedical fields in which biomarkers are used for specific clinical practice (Lee et al. 2006). Subgroups will be divided through a priori definitions or through data-driven approaches. The protocols will be shared with international research groups to determine reproducibility (Loth et al. 2017).

The Autism Biomarkers Consortium for Clin-ical Trials (ABC-CT) is a US-based multisite study working in collaboration with EU-AIMS for similar purposes. The ABC-CT is dedicated to utilizing objective approaches to develop reli-able measures of social-communicative behaviors in children with autism (www.asdbiomarkers. org). The longitudinal study collects electrophys-iological, eye-tracking, and video-tracking data as well as comprehensive characterization of indi-viduals through parent

and video-tracking data as well as comprehensive characterization of indi-viduals through parent interviews, behavioral observation, and parent questionnaires at three points over a 6-month period. Additionally, DNA samples are collected from the participants with autism and their biological parents for future genetic analysis. Ultimately, the study is designed to create an infrastructure which will readily trans-fer into research and treatment areas, such as clinical trials, with tools that

will readily trans-fer into research and treatment areas, such as clinical trials, with tools that will allow for objec-tive and predictive measurements of how individ-uals with ASD will respond to treatments.

In contrast to these studies oriented toward biomarkers for use in clinical trials, the Infant Brain Imaging Study (IBIS) Network seeks to develop screening and diagnostic biomarkers. The study collects longitudinal MRI data at ages 6, 12, and 24 months from infants who have an older sibling with autism thus have an increased risk for developing autism themselves (Shen et al. 2017). It has already delivered promising results, as elevated extra-axial cerebrospinal fluid (EA-CSF) at 6 months of

delivered promising results, as elevated extra-axial cerebrospinal fluid (EA-CSF) at 6 months of age predicted the diag-nosis of toddlers at 24 months of age where the infants with most severe autistic behaviors at 24 months had the highest EA-CSF volume. This converged with findings from an earlier study with EA-CSF (Shen et al. 2013). The longi-tudinal study design deepened the developmental understanding of EA-CSF in typical and atypical development, and the automated segmentation algorithm

of EA-CSF in typical and atypical development, and the automated segmentation algorithm used has the potential to translate to many settings (Pelphrey 2017).

The consortia address many of the challenges to biomarker identification in autism through their study designs. By establishing multisite studies, biomarker measures can be evaluated with suffi-ciently large cohorts, developmental effects can be examined through large cohorts and longitudi-nal design, and the feasibility of translating these measures to a larger scale can be assessed.

**Future Directions**  The efforts in biomarker research are moving toward earlier identification and precision-based treatments of ASD while simultaneously deepen-ing our understanding of the disorder. The success of proposed biomarkers, however, is dependent on the translational impact of the technologies used to measure these biomarkers. In order to implement biomarker research goals, the bio-marker measures must be objective, sensitive, economical, and scalable. Here, electrophysiol-ogy is

measures must be objective, sensitive, economical, and scalable. Here, electrophysiol-ogy is used an example addressing the aforemen-tioned criteria.

**Applicability**  Methods that are useful in a large functional range, such as individuals with intellectual disability, and developmental range, as early as infancy, are well suited for future biomarker research. Electrophys-iology requires minimal instructions with a straightforward application. Generally, the partic-ipant is only required to tolerate sensors on their skin. Artifacts due to movement during a session recording are specific to trials which can be removed from the data or

to movement during a session recording are specific to trials which can be removed from the data or corrected to preserve the integrity of the recording.

**Objectivity**  Methodological rigor in defining biomarker parameters when compared to other methodolo-gies like behavioral methods will be critical for future research. Consistent data collection across multiple locations is possible through identical equipment and experimental paradigms without the need for developing clinician reliability.

**Sensitivity**  Electrophysiological measures, for example, can potentially measure processes relevant to bio-marker discovery more sensitively than behav-ioral methods. These recordings may delineate processes that either may never be present in behavior or not present in behavior yet. Many of the features that characterize the ASD diagnosis are not observable until the second year of life; therefore, methods that sensitively index these processes may elucidate atypical processes before

therefore, methods that sensitively index these processes may elucidate atypical processes before overt behaviors are displayed.

**Cost and Scalability**  Electrophysiological methods are an extremely cost-effective way to measure biological pro-cesses; thus prohibitive cost is not a factor com-pared to other biological assays. Large-scale implementation with electrophysiological record-ings would readily translate into the current healthcare system since these facilities already exist. Psychophysiological methods offer both low cost and widespread availability necessary to utilize biomarkers on a public health level.

**Conclusion**  Biomarker research has made considerable strides in the last decade. Long-term investments have been made in the hopes of discovering translat-able, practicable biomarkers. As the field of bio-marker research moves forward, researchers must ascertain the appropriate biomarkers to pursue and whether it is more advantageous to examine pro-cesses dimensionally or examine diagnoses cate-gorically. While there are many challenges to biomarker research in autism, identifying and

cate-gorically. While there are many challenges to biomarker research in autism, identifying and addressing these challenges will increase the abil-ity to discover applicable biomarkers. Large-scale efforts such as the EU-AIMS LEAP and ABC-CT demonstrate collaborative efforts that should have the power to detect modest effect sizes and prom-ise to disseminate the methodologies used to translate these potential biomarkers to other set-tings. Due to the current efforts in the field, bio-markers

these potential biomarkers to other set-tings. Due to the current efforts in the field, bio-markers may soon be informing individualized treatment plans and implemented in multisite clinical trials and deepening our understanding of autism.

**Birth Complications**  **Definition**  Birth is a crucial event in life. The transition from the uterine status to the outside world is a very stressful occasion for parents but also for the newborn child. In retrospect, many parents will impute developmental deviances to a poor start in life. Thus, birth and perinatal complications and the first week of the neonate have been the focus of many research aimed to determine if factors involved with birth and start of life play a role in the

research aimed to determine if factors involved with birth and start of life play a role in the etiology of autism.

**Definitions**  *   Birth: the transition from intrauterine life to life outside. This includes the vaginal pathway or the extraction through a so-called caesarian operation.
*   Complications: any deviance from normal physiology around the birth (perinatal period).
*   Perinatal period: an interval extending from the 28th week of gestation until the 28th day after birth.

*   Apgar score: simple repetitive method intro-duced by Virginia Apgar in 1952 to assess the health of a newborn baby – appearance (skin color), pulse (heart rate), grimace (reflex irri-tability), activity (muscle tone), and respira-tion. The five criteria are given marks ranging from 0 to 2. 0 is absent of highly disordered and 2 is fair and normal. Thus, the scale ranges from 0 to 10. It is mostly scored 5 and 10 min after birth. 7–10 is considered normal, 4–7 fairly low, and under 3

is mostly scored 5 and 10 min after birth. 7–10 is considered normal, 4–7 fairly low, and under 3 critically low.

**Historical Background**  Direct injuries following forcipes extractions or acute termination can cause massive damage to the brain of a neonate, with palsy and severe developmental hazards as consequences. These dramatic circumstances have not been related to the emergence in later life of any form of psycho-pathology. But over the years, subtle deviances at birth (low Apgar scores, respiratory distress, hypoglycemia, or hyperbilirubinemia after 5–7 days) have been associated with

respiratory distress, hypoglycemia, or hyperbilirubinemia after 5–7 days) have been associated with developmen-tal disorders such as attention deficit hyperactivity disorders of autism. When taking the developmental history in par-ents of children with developmental disorders, one is often struck by the emphasis put on perinatal hazards. These retrospective recollections are not always reliable. Yet they illustrate how much value is given to the condition of the child just after birth as a

Yet they illustrate how much value is given to the condition of the child just after birth as a potential cause of later disorders. Thus, meth-odologically retrospective date must be distrusted. In this item, the evidence for associations between birth complications and autism will be reviewed from methodologically sound studies.

**Current Knowledge**  Gardener et al. (2011) carried out a comprehen-sive meta-analysis to evaluate the perinatal and neonatal risk factors for autism. After a PubMed, Embase, and PsycINFO search, 60 methodologi-cally sound studies (out of 124 published until 2007) could be retained for a thorough meta-analysis of the possible causal relationship between the occurrence between perinatal and neonatal complications and autism. Since then, only five studies were published to date, implying that

complications and autism. Since then, only five studies were published to date, implying that the Gardener et al. meta-analysis gives a good summary of the current knowledge with regard to peri- and neonatal factors that are associated with an increased risk for autism. This formulation is of great importance because peri- and neonatal fac-tors appear to be by no means specific for any kind of psychopathology, thus pointing towards a multicausal heterogeneity already hypothesized by Bolton et al.

thus pointing towards a multicausal heterogeneity already hypothesized by Bolton et al. (1997).

But the results from series of well-conducted studies clearly show that there are factors that have no association with autism and others that show a positive association with the occurrence of autism later in life: Factors that show no association with autism are the following: premature rupture of mem-branes, delayed labor, loss of amnionic fluid on the day before delivery, analgesia during labor, green [meconium holding] amnionic fluid, acido-sis (pH < 7.2 in the umbilical cord, shoulder

labor, green [meconium holding] amnionic fluid, acido-sis (pH < 7.2 in the umbilical cord, shoulder dystocia, near-dead baby, “blue baby,” hypogly-cemia, hypocalcemia, infantile vomiting, intracra-nial hemorrhage, macrocephaly, abnormal fetal cardiac activity, assisted vaginal delivery, post-term birth, a high birth weight, and incubator use! Finally, neither preterm birth nor Cesarean delivery reached statistical significance.

Factors that do show a significant increase of the risk for autism are the following: abnormal presentation in general, beech presentation, umbilical cord complications (prolapse, cord wrapping around the neck), multiple birth, (very) low birth weight, small for gestational age, fetal distress, Apgar scores low after 5 min, birth injury or trauma, congenital malformations, meconium aspiration, neonatal anemia, ABO or rhesus incompatibility, and hyperbilirubinemia. There are also two factors

neonatal anemia, ABO or rhesus incompatibility, and hyperbilirubinemia. There are also two factors that are not related directly to the condition of the child but enhance the risk for autism and those are: maternal bleeding and season of birth (with two high-risk periods, namely, children born in March and in the late summer (August and September)). Yet, from the discussions around birth com-plications as a risk factor for autism, it appears clearly that they cannot be perceived indepen-dently

as a risk factor for autism, it appears clearly that they cannot be perceived indepen-dently from earlier prenatal factors. Factors such as advanced age of both mother and father, but also an autistic condition in the offspring as a result of genetic and early embryo-environment interplay early in gestation (viral infections, drugs, etc.), suggest that the birth complications are more the result of prenatal factors that are the cause of autism later on. According to the classic Bolton et al.

of prenatal factors that are the cause of autism later on. According to the classic Bolton et al. (1997) study on the “shared risk hypothesis,” this shared risk hypothesis is also supported by the Zwaigenbaum et al. studies (2002) that show more composite prenatal, peri-natal, and neonatal adversity among both affected children and unaffected siblings in fam-ilies with a high loading for the broader autism phenotype.

**Future Directions**  In order to fully understand the impact as a risk factor of birth complications on the increased risk for autism, longitudinal studies, starting well before birth like the ABC study in Norway of Generation R, are needed in order to get a better understanding of the interplay between family genetic-embryonic development-birth hazards and neonatal stress on the risk factors for autism.

**Birth Order Effects in Autism**  **Definition**  Birth order relates to the order in which a child is born to a set of parents and birth order effects refer to differences seen between individuals that are not of the same birth order. In autism, birth order effects have been identified in a few studies. One type of birth order effect that has been observed and replicated is a lower nonverbal IQ score in the second child with autism in the family (Lord 1992; Spiker et al. 2001). Another study

score in the second child with autism in the family (Lord 1992; Spiker et al. 2001). Another study found that there was an effect of birth order on multiple aspects of autism including repetitive behaviors, phrase speech, social communication, and non-verbal communication (Reichenberg et al. 2007). Finally, in a more recent study general birth order effects were seen where middle births in multiplex families and later births in simplex families were more likely to develop autism (Turner et al.

families and later births in simplex families were more likely to develop autism (Turner et al. 2011). There are a number of potential reasons for birth order effects, and these include demographic fac-tors such as stoppage in a family after the first child with autism is born, as well as biological factors including paternal age effects, maternal age effects, maternal-fetal genotype incompatibil-ities, and potential epigenetic effects. The discov-ery of birth order effects can help guide

and potential epigenetic effects. The discov-ery of birth order effects can help guide researchers in their examination of potential risk factors for autism.

**Blindness**  **Definition**  The relationship of blindness and autism spectrum disorders (ASD) is complex, and, as a group of prominent researchers had aptly noted, it has been a continuing source of interest and perplexity for researchers and clinicians (Hobson et al. 1999). Central to examinations of the relationship is a collection of behaviors regarded as characteristic of children who are blind, in particular children who are congenitally blind, and children who have profound visual

are blind, in particular children who are congenitally blind, and children who have profound visual impairment. The collection includes stereotyped and ritualistic behaviors, pronounced limitations of social and communica-tive competence, delayed and limited symbolic play and language, delayed use and reversals of personal pronouns, echolalia and speech limita-tions, and difficulties with abstract thinking (Gense and Gense 2005; Perez-Pereira and Conti-Ramsden 1999). Many of these behaviors also

thinking (Gense and Gense 2005; Perez-Pereira and Conti-Ramsden 1999). Many of these behaviors also are considered to be characteristic of sighted children who have ASD. Because of the seeming commonality of certain behaviors of children who are blind and children who have ASD, researchers and clini-cians have been challenged in understanding the nature of the apparent similarities (Fazzi et al. 2007; Hobson and Lee 2010; Parr et al. 2010). Essentially, the question is whether such behav-iors,

2007; Hobson and Lee 2010; Parr et al. 2010). Essentially, the question is whether such behav-iors, when demonstrated by blind children, indi-cate ASD. Blindness literature can offer other hypotheses for what are viewed as autistic-like behaviors in blind children: Careful consideration should be given to sensory and social deprivation, early medical complications, limited motor or physical activities, lack of ability to imitate, lack of a variety of activities, self-regulation, and others

lack of ability to imitate, lack of a variety of activities, self-regulation, and others (Huebner 1986; McHugh and Lieberman 2003; Warren 1984). The preeminent challenge for both researchers and clinicians may well be definitively identifying ASD in individuals who have significant vision loss. A major hurdle is the lack of appropriate diagnostic screening and assessment tools for this population. Standards, such as the Autism Diagnostic Observation Schedule (ADOS: Lord et al. 1999, 2001, 2002,

Standards, such as the Autism Diagnostic Observation Schedule (ADOS: Lord et al. 1999, 2001, 2002, 2008) and Childhood Autism Rating Scale (CARS: Schopler et al. 1988; Schopler and Van Bourgondien 2010), which are designed for use with sighted individ-uals, are heavily weighted with visually based tasks. In assessing blind subjects, some researchers have made modifications to these tools, claiming their clinical utility, although the validity of these modifications has not been tested

claiming their clinical utility, although the validity of these modifications has not been tested (Jutley-Neilson et al. 2013; Williams et al. 2014). The absence of measures designed for use with children who have significant visual impairments compounds the difficulties of differentiating autistic-like behaviors from ASD in blind children.

**Historical Background**  In the field of blindness, the classic writings of Selma Fraiberg are most often recognized as the first reports of autistic-like behaviors in blind children. In 1964, Fraiberg and Freedman published their observations of a group of blind children, stating that nearly a third of the children had “ego deviation.” Keeler (1958), however, is credited with the earliest report of such behaviors in his study of young children with retrolental fibroplasia (otherwise known as

of such behaviors in his study of young children with retrolental fibroplasia (otherwise known as retinopathy of prematurity). Several later studies continued investigation of an association between ASD and specific ophthalmological disorders or certain genetic disorders associated with a significant visual impairment. The most frequently researched diagnoses have included Leber’s con-genital amaurosis, optic nerve hypoplasia, septo-optic nerve dysplasia, CHARGE syndrome, and retinopathy of

amaurosis, optic nerve hypoplasia, septo-optic nerve dysplasia, CHARGE syndrome, and retinopathy of prematurity (Bahar et al. 2003; Chase 1972; Ek et al. 1998; Smith et al. 2005). Researchers, however, are not in consensus regarding the association between a specific oph-thalmological diagnosis and ASD (Fraiberg 1977; Hobson et al. 1999; Mukaddes et al. 2007). Some investigators indicated that congenital blindness predisposed a child to ASD (Brown et al. 1997). As researchers sought a better

congenital blindness predisposed a child to ASD (Brown et al. 1997). As researchers sought a better under-standing of the relationship between blindness and ASD, the scope of investigations broadened. The degree of vision impairment in relation to the manifestation of autistic-like features or ASD in children who are blind has been a focus of inves-tigators. Some researchers have claimed that more severe vision loss, especially loss of the ability to distinguish forms, increases the likelihood

severe vision loss, especially loss of the ability to distinguish forms, increases the likelihood of autistic-like behaviors (Cass et al. 1994). Cogni-tive impairment reflected in low IQ scores, as well as other additional disabilities, has also been asso-ciated with autistic-like behaviors and ASD in blind children (Brown et al. 1997). Other studies have examined the roles of sen-sory deprivation and related environmental fac-tors in contributing to the presence of the autistic-like behaviors

and related environmental fac-tors in contributing to the presence of the autistic-like behaviors and ASD. Some investigators have taken a functional perspective of these behaviors, countering that in most cases, such behaviors are adaptive responses to vision loss (Cass 1998; Mottron and Burack 2001). A later review of studies reported that there were no consistent results regarding the relationship and specific types of ophthalmological diagnoses, the severity of vision impairment, and the

and specific types of ophthalmological diagnoses, the severity of vision impairment, and the role of associated disabilities (Mukaddes et al. 2007). Tied to the complexities of identification of ASD in blind children have been questions of prevalence. Reported prevalence rates have varied greatly. The US Centers for Disease Control and Prevention (CDC) conducted surveillance of chil-dren with visual impairment in metropolitan Atlanta, Georgia, and determined that approxi-mately 6–7% of the

visual impairment in metropolitan Atlanta, Georgia, and determined that approxi-mately 6–7% of the children had co-occurring ASD (Kancherla et al. 2013). Studies have reported up to 30 times greater prevalence of ASD in blind children than in sighted children (Cass et al. 1994; Hobson et al. 1999; Jure et al. 2016).

**Current Knowledge**  A recent review of 11 studies published from 2000 to 2015 focused on the similarity between visual impairment and autistic traits (Buchart et al. 2017). Findings suggested that the presence of autistic traits, such as limited communication and social interaction, together with repetitive and restrictive behavior does not necessarily war-rant a diagnosis of ASD. The authors specifically noted that sample sizes were small, and measures used to diagnose ASD have not been

specifically noted that sample sizes were small, and measures used to diagnose ASD have not been systemati-cally tested on a broader visually impaired popu-lation. [It is important to recognize, however, the low prevalence rate of childhood blindness. According to a US survey, it is the least prevalent, 0.13%, of all developmental disabilities (Boyle et al. 2011)]. The authors also expressed concern that some studies had adapted standardized autism diagnostic measures, thus undermining their

that some studies had adapted standardized autism diagnostic measures, thus undermining their validity and reliability. Debates have continued regarding the nature of autistic-like behaviors in children with significant vision loss. Andrews and Wyver (2005) have held that blind children who also display such behav-iors should be viewed as having specific features rather than being on the autism spectrum. The authors questioned whether these behaviors of blind children are characteristic of true

The authors questioned whether these behaviors of blind children are characteristic of true ASD or a different developmental pathway. Hobson and Lee (2010) also referred to a distinctive underlying pathway for blind children’s features that seem characteristic of ASD. They, in fact, termed the features as being quasi-autistic and suggested the clinicians hold back from the des-ignation of ASD. Williams et al. (2014) reported that some behaviors suggestive of ASD in sighted children do not

Williams et al. (2014) reported that some behaviors suggestive of ASD in sighted children do not distinguish children with ASD and significant vision loss from children without ASD and significant vision loss. Differentiating between autistic-like behaviors related to blindness and those essential to a diag-nosis of ASD is particularly challenging, espe-cially if clinicians have limited experience with blind children. When considering children with significant vision loss, there is risk of

with blind children. When considering children with significant vision loss, there is risk of mis-interpreting the basis of a child’s behaviors if the child is not provided appropriate modes and opportunities to develop and demonstrate competence.

**Future Directions**  Clearly, efforts must be directed toward the devel-opment of screening and assessment tools for identification of ASD in individuals with signifi-cant vision loss. Current diagnostic screening and assessment tools are heavily weighted with visu-ally based features and tasks, having been designed for use with sighted children. The com-ponents of tools for use with individuals who have significant visual loss need to be grounded in modalities other than solely visual.

who have significant visual loss need to be grounded in modalities other than solely visual. Researchers and clinician will need to devise alternative equiv-alents for criteria that are basic to current mea-sures, such as eye contact, directed gaze, and joint attention. The development of such measures is in very preliminary stages. A key concern is the lack of information regarding the progression of social development in the very heterogeneous popula-tion of individuals with significant vision

of social development in the very heterogeneous popula-tion of individuals with significant vision loss. Much is yet to be learned. Normative data on social development in children with visual impair-ment are necessary to best inform diagnostic criteria for ASD in this population. Directly tied to identification of ASD in children who are blind or who have significant visual impair-ment is the need for appropriate teaching methods, tools, and strategies for this population. It has not been

need for appropriate teaching methods, tools, and strategies for this population. It has not been established whether the current instructional interventions used with sighted children who have ASD are the most appropriate for children with significant vision loss, nor whether the various means can be adapted to be such. The question merits investigation, with the ultimate goal of devel-oping strategies, tools, and materials to address the specific learning needs of this population. Through the

tools, and materials to address the specific learning needs of this population. Through the review of studies regarding blind-ness and ASD, it is readily apparent that efforts have been focused nearly exclusively on children, especially young children. A near void exists regarding information about ASD in blind adults. A broader, life course perspective is called for in future studies.

**Block Design Subtest**  **Definition**  Block design is a subtest that is administered as part of several of the Wechsler Intelligence tests, including the Wechsler Preschool and Primary Scale of Intelligence (WPPSI, the Wechsler Intelligence Scale for Children-fourth edition (WISC-IV; Wechsler 2003) and the Wechsler Adult Intelligence Scale-fourth edition (WAIS-IV; Wechsler 2008). This subtest is included in the calculation of Performance IQ. It is primarily a measure of visual-spatial and

is included in the calculation of Performance IQ. It is primarily a measure of visual-spatial and organizational processing abilities, as well as nonverbal problem-solving skills. Because it is a timed task, it is also influenced by fine motor skills. The individual is presented with identical blocks with surfaces of solid red, surfaces of solid white, and surfaces that are half red and half white. Using an increasing number of these blocks, the individual is required to replicate a pattern that

Using an increasing number of these blocks, the individual is required to replicate a pattern that the test administrator presents to them – first as a physical model, and then as a two-dimensional picture. The number of blocks required to match the presented models increases and the patterns become increasingly difficult to visually dissect into components. Individuals who do well on this subtest tend to have an aptitude for perceiving spatial patterns and for flexible problem solving;

subtest tend to have an aptitude for perceiving spatial patterns and for flexible problem solving; performance is also aided by the ability to work quickly. Con-versely, one factor that may hinder an individ-ual’s performance on block design is the presence of high anxiety or perfectionistic tendencies (Hopko et al. 2005), as these can lead to an overly cautious approach that causes the individual to finish after the time limit. Poor performance may also be related to a number of factors that

to finish after the time limit. Poor performance may also be related to a number of factors that affect an individual’s ability to perceive spatial pat-terns, manipulate objects, or integrate visual and spatial information. Of note, individuals with autism spectrum disorders have been observed to show superior performance on the block design task (Shah and Frith 1993). This relative strength is described by the hypothesis of the Weak Central Coherence Theory, which suggests individuals with

described by the hypothesis of the Weak Central Coherence Theory, which suggests individuals with autism have difficulty seeing the “big picture,” and instead may per-ceive parts of the whole with more relative skill than individuals without autism (Happe and Frith 2006). While not captured in the final score of block design, it is clinically useful to observe how an individual approaches this task. One such behav-ior that can be informative to the test administrator includes the above-mentioned

One such behav-ior that can be informative to the test administrator includes the above-mentioned perfectionistic ten-dency, or alternatively, the tendency to be impul-sive or careless. An individual’s persistence may also be noted, as well as whether the individual tends to approach the pattern in a piecemeal fash-ion, or in a more global fashion.

**Blood-Oxygen-Level-Dependent (BOLD) Signal**  **Definition**  Blood-oxygen-level-dependent (BOLD) signal is the magnetic resonance imaging (MRI) contrast of blood deoxyhemoglobin. Seiji Ogawa and his colleagues first discovered this intrinsic contrast mechanism in 1990. Neurons do not store internal reserves of glucose and oxygen, which are essen-tial to their proper function. Increases in neuronal activity, typically in response to a demand for information processing, require more glucose

activity, typically in response to a demand for information processing, require more glucose and oxygen to be rapidly delivered via the blood stream. Via this hemodynamic response, blood releases glucose and oxygen to active neurons at a faster rate relative to inactive neurons. This results in a surplus of oxyhemoglobin localized to the active area, giving rise to a measureable change in the local ration of oxy- to deoxyhemoglobin, thus providing a localizable marker of activity for MRI.

**Board Certified Associate Behavior Analyst**  **Definition**  The Behavior Analyst Certification Board®, Inc. (BACB®) credentials practitioners at four levels. The different categories denote varied depths of training and levels of independence in practice. Individuals who apply to become Board Certi-fied Behavior Analysts® (BCBA®) must possess at least a master’s degree, have 225 classroom hours of specific graduate-level coursework, meet super-vised experience requirements, and pass the BCBA

of specific graduate-level coursework, meet super-vised experience requirements, and pass the BCBA examination. In order to use the Board Certified Behavior Analyst - Doctoral (BCBA-D) designa-tion, a BCBA must possess an acceptable doctoral degree and meet other criteria. As of 2015, appli-cants for the BCBA credential will need to have completed 270 h of specific coursework. Persons who apply to become Board Certified Assistant Behavior Analysts® (BCaBA®) must have at least a bachelor’s degree,

become Board Certified Assistant Behavior Analysts® (BCaBA®) must have at least a bachelor’s degree, have 135 class-room hours of specific coursework, meet super-vised experience requirements, and pass the BCaBA examination. The BCaBA must have 1000 h of supervised independent field or 670 practicum hours or 500 intensive practicum hours. Once certified, BCaBAs must be super-vised by a BCBA; this supervision requirement includes supervision for 5% of hours for the first 1000 h post certification and

requirement includes supervision for 5% of hours for the first 1000 h post certification and then ongoing super-vision for at least 2% of hours following the initial 1000 post certification hours. A recently added credential, Registered Behav-ior Technician, has created a professional level for behavior technicians. Individuals with this creden-tial must practice under a BCBA, BCaBA, or FL-CBA. In order to obtain the RBT credential, the individual must have a high school diploma, complete 40 h of

to obtain the RBT credential, the individual must have a high school diploma, complete 40 h of training, pass a competency exam, and demonstrate competency across a task list. Experience and training requirements at all levels of certification are rigorous and ensure that certificants meet minimal competence levels in their knowledge and abilities. BACB certificants must accumulate continuing education credit and recertify over 3 years to maintain their credential. In addition, certificants must

credit and recertify over 3 years to maintain their credential. In addition, certificants must annually confirm that they remain in compliance with the BACB’s standards, including ethical guidelines and disciplinary standards. Because certification requirements periodi-cally change as standards are increased, readers are encouraged to consult (www.bacb.com) for updated information.

**Body Movements, Imitation of**  **Definition**  Imitation of body movements involves copying acts that do not include the use Borderline Intellectual Functioning and Comprehensive Case Management Cara G. Streit Threshold Program, Lesley University, Cambridge, MA, USA  Definition Borderline intellectual functioning (BIF) is a little-known and little-utilized classification that has historically described individuals who have IQ scores below average but above an intellectual disability (ID).

described individuals who have IQ scores below average but above an intellectual disability (ID). People with BIF may have adaptive functioning deficits similar to those experienced by people with mild intellectual disabilities (ID) but are often denied critical services that are available to people with ID diagnoses because their IQs scores are too high (Peltopuro et al. 2014).

Adults with borderline intellectual functioning, with or without autism, often require supports similar to those beneficial to people with mild ID. Comprehensive case management is a valuable and effective method of supporting adults with borderline intellectual functioning. Comprehensive case management involves a primary support professional or team of professionals working collaboratively to help individuals set, pursue, and attain goals for health, safety, employment, socialization, and

help individuals set, pursue, and attain goals for health, safety, employment, socialization, and independence. Case management often begins with addressing concrete or urgent needs, such as for housing, healthcare, or employment, and expands to promote social-emotional wellbeing and personal fulfilment. It involves coordination of care across many service systems and domains and is highly individualized.

Historical Background The history of borderline intellectual functioning as an official diagnosis is one of progressively declining prominence and usefulness (Wieland and Zitman 2016). In the DSM-II, what is referred here as borderline intellectual functioning was called borderline mental retardation. In the DSM-III, borderline mental retardation (i.e., BIF) was removed from mental retardation and reclassified as a V code, leaving a whole population of individuals without a suitable diagnosis.

reclassified as a V code, leaving a whole population of individuals without a suitable diagnosis. It remained a V code in the DSM-IV-TR and was defined using an IQ score range of 71–84. In the DSM-5, the IQ range was removed, leaving it with little definition and limited usefulness as a classification.

Rationale or Underlying Theory The DSM-5 leaves gray area in the diagnosis of intellectual disability as well, by emphasizing a person’s adaptive functioning and the diagnosing clinician’s judgement over score in making the diagnosis. In practice, this means that some children and adults whose IQ scores are over 70 (who may have previously been described as having BIF) may now receive ID diagnoses, while others may not. This gray area is particularly concerning considering the difficulty of

while others may not. This gray area is particularly concerning considering the difficulty of accurately measuring IQ in people with autism (Rao et al. 2015).

The IQ score range of 71–84 is between 1 and 2 standard deviations below the mean of the standardized distribution of scores. Because the scores fit a normal curve, as much as 13.6% of people fall into this IQ range. The incidence of BIF is nearly twice as high among people with autism. According to the Centers for Disease Control’s 2012 prevalence data, 24.5% of children with autism have IQ scores in the range of 71–84, compared with 31.6% in the range of an intellectual disability and 43.9%

in the range of 71–84, compared with 31.6% in the range of an intellectual disability and 43.9% with average or above average IQ (Christensen et al. 2016). While they may have a diagnosis of autism without intellectual disability, according to the DSM-5, this system of classification does not capture their borderline intellectual functioning unless it is specifically noted with a V code by the diagnosing clinician. Children with BIF are known to be at increased risk for persistent mental health

clinician. Children with BIF are known to be at increased risk for persistent mental health issues (Jankowska 2016), poor social functioning drug abuse (Gigi et al. 2014), poor parenting, and school adjustment issues (Jankowska et al. 2014), making it critically important that BIF be recognized.

While some children and adults with borderline intellectual functioning may have only mild adaptive functioning deficits, or even none at all, others experience deficits comparable to those experienced by individuals with mild intellectual disabilities. A review of the literature on BIF shows that, compared with peers who have average IQ scores, people with BIF have lower performance on tests of cognitive and academic skills, hold jobs that are lower-skilled and lower-paid, have poorer executive

and academic skills, hold jobs that are lower-skilled and lower-paid, have poorer executive functioning and abstract reasoning, have slower processing speeds, and are more likely to be incarcerated or charged with crimes, have mental health problems, or display antisocial behaviors (Peltopuro et al. 2014). On many of these measures, people with BIF fall between people with specific learning disabilities and those with mild intellectual disabilities. Authors of the review conclude that people

and those with mild intellectual disabilities. Authors of the review conclude that people with BIF may be in a “worse situation” than adults with MID (mild intellectual disability) or with SLDs (specific learning disabilities) (p. 438). They explain that “because the problems with BIF are not as visible as those in MID and not as specific as those in SLDs, they often go unrecognized and, consequently, no support is offered.” In the United States, a diagnosis of an ID is required to receive

no support is offered.” In the United States, a diagnosis of an ID is required to receive certain critical supports, services, and government entitlements; people with BIF are denied services that could dramatically improve their life circumstances, all because of their slightly higher IQ scores. Children and adults with a diagnosis of autism who have IQ scores in this range may be able to qualify for some supports and services based on their autism diagnosis, even without an accompanying

for some supports and services based on their autism diagnosis, even without an accompanying diagnosis of ID. However, this is not the case in all places or for all services.

In the United States, children with disabilities are guaranteed a free and appropriate public education. A child who fits the, albeit vague, classification for borderline intellectual functioning (but not intellectual disability) may have another diagnosis, like autism, a specific learning disability, or ADHD, that can qualify them for public school services and accommodations. As an adult, these diagnoses do not guarantee comprehensive state or federal services.

Shattuck et al. (2012) note that while research on services and interventions for children with autism has become more robust in sync with the increasing prevalence of autism diagnoses, research on adult services has been slow to follow. It is clear that autism can be impactful across the lifespan and that adults with autism have unmet service needs in multiple life domains (Turcotte et al. 2016). This is particularly true for individuals with BIF or ID, and appropriate services are less

2016). This is particularly true for individuals with BIF or ID, and appropriate services are less available to adults with BIF than to adults with ID. The services that do exist tend to be siloed; for example, an adult with autism and BIF can access employment supports from their state vocational rehabilitation agency but may need another agency to provide assistance in managing an apartment in order live independently. Adult service systems are generally not designed to work seamlessly

in order live independently. Adult service systems are generally not designed to work seamlessly together to support the needs of each individual accessing them, and an adult with BIF may not even qualify for services from all the individual systems that would be relevant for their goals. Those they do qualify for can be difficult for someone with a cognitive impairment to access and utilize effectively. Filling out paperwork, getting to appointments on time, and finding an unfamiliar service

Filling out paperwork, getting to appointments on time, and finding an unfamiliar service location can all be significant challenges for someone with borderline intellectual functioning. Case managers can assist people with BIF find and use the services they need and coordinate care across services.

For adults with intellectual disabilities, case management may be provided by a state developmental disability agency and/or the staff of a residential program and it may or may not be comprehensive. For adults who do not live in staffed residences and who do not qualify for services from a state developmental disability agency due to relatively higher IQ scores, as is the case for most adults with borderline intellectual functioning, comprehensive case management must come from another source.

borderline intellectual functioning, comprehensive case management must come from another source. Adults with autism and borderline intellectual functioning, or their families and supporters, should check with their state developmental disability agency to find out whether they qualify for case management from the state even with IQ scores higher than those required for a diagnosis of an intellectual disability. If not, this type of case management may be offered privately by individuals or by

disability. If not, this type of case management may be offered privately by individuals or by disability service organizations, either for profit or not for profit.

Goals and Objectives The goal of comprehensive case management is to support adults in setting, pursuing, attaining, and maintaining goals of their own choosing and to promote their overall health, safety, happiness, and well-being. Typically, comprehensive case management is most useful when an individual has multiple or complex goals, or has struggled with setting or attaining goals in the past. It may also be particularly useful for people with a dual diagnosis or a special health care

past. It may also be particularly useful for people with a dual diagnosis or a special health care need. Goals may include:

*   Finding employment *   Living independently *   Making friends and learning how to manage relationships *   Managing adult responsibilities, like keeping up an apartment and organizing important paperwork
*   Learning how to navigate public transportation *   Improved budgeting and money management *   Securing and/or managing entitlements and benefits (health insurance, Social Security payments, affordable housing, etc.)

*   Attaining a higher level of education *   Coordinating health care services *   Planning for life after the death of parents or caretakers *   Any other goal that could be supported by a case manager Goals should be set by the client, with the support of the case manager and of other people who are involved in life-planning with the client (e.g., family members, mental health clinicians, doctors, and educators).

Treatment Participants Ideal candidates for comprehensive case management are adults with borderline intellectual functioning who require support in one or more areas in order to achieve the level of independence, community participation, and social engagement they desire. Adults with a range of adaptive functioning skills can benefit from case management, and the more significant the person’s adaptive functioning deficits, the more intensive and comprehensive the case management needs to be.

adaptive functioning deficits, the more intensive and comprehensive the case management needs to be. Adults of any age can benefit from comprehensive case management and ideal services will follow an individual through their lifespan.

Clients of comprehensive case management may have a range of diagnoses in addition to their below average IQ scores. They may have autism, cerebral palsy, a brain injury, special health care needs, or genetic disorders, to name a few. Conversely, they may have no official diagnosis, but a history of educational and adaptive functioning deficits with no known etiology, other than an IQ score in the borderline range.

Treatment Procedures While this section is titled “Treatment Procedures” for consistency within the publication, comprehensive case management should not be considered treatment. Rather, it is a system of support and communication that comes together underneath an individual in order to help them rise up to their potential. The professional coordinating an individual’s case management must foster a culture of collaboration with the individual, their family members, and their other providers

a culture of collaboration with the individual, their family members, and their other providers that supports their self-determination, bolsters their independence, and encourages them to make their own choices.

Comprehensive case management might entail weekly meetings with a client, or may be more or less frequent depending on what the client wants and needs. Some clients may only need relatively short-term intervention, for example, help finding new health insurance when they can no longer be on a family member’s, or may need long-term services if their goals are more complicated. A client with complex goals, fewer state, federal, and nonprofit supports, less family support, or multiple diagnoses may

goals, fewer state, federal, and nonprofit supports, less family support, or multiple diagnoses may need long-term case management that helps them manage issues and pursue goals in multiple domains and settings throughout their lives. Services should always be highly individualized in their frequency, duration, and in the level of hands-on assistance provided by the case manager.

Organizations offering comprehensive case management should be prepared to follow clients throughout their lives; this reduces the number of transitions for the individual, helps with building provider/client rapport, and streamlines long-term planning efforts and the preparation for later life. Within organizations, providers who are leaving should take care to transition clients thoughtfully to new case managers.

Services must be fully accessible to each individual client. Some common accommodations include:
*   Emailing or calling the client to remind them of appointments *   Communicating by the client’s preferred method (email, phone, text, instant messaging, etc.)
*   Providing physically accessible meeting spaces *   Travel training to help the client learn how to get to and from the case manager’s office or service location

*   Communicating directly with family members, with the client’s permission *   Converting any documents the client needs into accessible formats Case managers should refer their clients out for specialized services beyond their expertise or licensure, such as psychotherapy and medical care, but should coordinate the connection between the client and the specialist to whatever degree the client requires; this may mean setting up a first appointment together, showing the individual how to get to

this may mean setting up a first appointment together, showing the individual how to get to the specialist, or even traveling to a first appointment with the client if necessary and desired by the individual. Of course, the case manager must receive permission from the client when communicating with any other parties about their case management or other coordinated services. As much as possible, clients should be guided in advocating for themselves with family members and providers, and case

clients should be guided in advocating for themselves with family members and providers, and case managers should avoid speaking for them except when clients request it and when it is absolutely necessary for clear communication. Instead, case managers can help clients develop scripts for communicating their needs to others, make phone calls together on speaker phone, and attend meetings together, if such support is necessary.

Efficacy Information There is no body of literature specifically on the efficacy of comprehensive case management in improving outcomes for adults with BIF. However, data from the Lesley University Threshold Program, which serves young adults with BIF, suggests that 2 years of case management in the context of a college-based postsecondary program may contribute to positive employment, social, and independent living outcomes (Lesley University 2015). Graduates of the Threshold program have a

and independent living outcomes (Lesley University 2015). Graduates of the Threshold program have a paid employment rate of 79% and work an average of 31 hours per week. Threshold program alumni may choose to continue participating in comprehensive case management throughout their lives, provided by the program.

The efficacy of comprehensive case management varies depending on the experience, persistence, and flexibility of the case manager, the motivation of the client, the complexity of the goals being pursued, and the level of other supports available to the client. A highly efficacious case manager will ensure that communication with the client is through a method comfortable and convenient to the client, will be quickly responsive to the client, and will reach out to the client if there is any

client, will be quickly responsive to the client, and will reach out to the client if there is any concern that they need additional supports in order to effectively utilize the case management.

Outcome Measurement Individual outcomes should be measured by setting goals for case management, directed by the client, and checking-in on those goals together at predetermined times or as necessary. For many clients, comprehensive case management can be deintensified or even phased out over time as the client develops the skills to manage a wider range of responsibilities on their own.

Qualifications of Treatment Providers Providers will typically have a background in human services, social work, mental health counselling, special education, vocational rehabilitation, or a related field. Providers need broad knowledge of the educational and adult service systems available to people with disabilities. Depending on the organization through which case management is offered, additional licensure or education may be required.

See Also DSM-5 DSM-5 and Autism Spectrum Disorder Higher Education Opportunity Act of 2008 (HEOA) Learning Disability   Brain connectivity refers to both structural connections between distinct regions of the brain as well as coordinated functional activity within networks of different brain regions, which may or may not share direct structural connections. Structural and functional connectivity in the brain are interrelated in that altered structural connections can affect functional

in the brain are interrelated in that altered structural connections can affect functional coordination within brain networks and altered functional activity can affect structural connections via adaptive changes from synaptic pruning and dendritic arborization. Although there is extensive evidence to support altered structural connectivity in the brain in individuals with autism (for a specific example, see “Corpus Callosum Abnormalities in Autism”), most brain connectivity theories of autism

example, see “Corpus Callosum Abnormalities in Autism”), most brain connectivity theories of autism spectrum disorder (ASD) focus on differences in functional connectivity (FC), defined as “temporal correlations between spatially remote neurophysiological events” (Friston et al. 1993). In this regard, FC is most often measured by comparing correlations between brain regions for fluctuations of the blood oxygen-level-dependent (BOLD) response from fMRI data (see Functional Magnetic Resonance

the blood oxygen-level-dependent (BOLD) response from fMRI data (see Functional Magnetic Resonance Imaging) that is collected during passive rest (no stimulus) or during the completion of a cognitive processing task. Accumulating evidence from this line of research suggests that the development of typical FC patterns in the brain are altered in individuals with ASD. For instance, early investigations reported general patterns of global hypoconnectivity (under-connectivity) in individuals with

reported general patterns of global hypoconnectivity (under-connectivity) in individuals with ASD (Just et al. 2004), but subsequent studies have indicated more complex patterns of both hypo- and hyper-connectivity across different brain regions and networks. As such, general patterns of global (long-range) hypoconnectivity coupled with local (short-range) hyperconnectivity have also been proposed (Wass 2011). However, these theories oversimplify much more complex alterations of brain

proposed (Wass 2011). However, these theories oversimplify much more complex alterations of brain connectivity in individuals with ASD, especially regarding the development of FC over time. Models of optimized brain organization exhibit robust FC between neighboring brain regions with some additional long-range connections to more distant regions in order to minimize the metabolic cost of information processing. Consistent with this model, maturational changes of brain networks typically

processing. Consistent with this model, maturational changes of brain networks typically involve functional segregation between non-contributing anatomical neighbors with concurrent integration of more distant brain regions that contribute to the processing of domain-specific information (Fair et al. 2009). Conceptualized within this developmental framework, emerging theories of brain connectivity in ASD suggest that information processing is affected by disruption of the maturation and adaptive

in ASD suggest that information processing is affected by disruption of the maturation and adaptive development of functional integration within as well as segregation between brain networks (Rudie et al. 2013).

More recent research into disruptions of brain connectivity in ASD have reported some promising results, but the well-known heterogeneity in the etiology, neurobiology, and symptomatology of ASD across individuals suggests that there is most likely not a unique or defining brain connectivity pattern. It is also not yet clear whether FC differences contribute directly to the pathogenesis of the disorder or only emerge as secondary features associated with altered cognitive and behavioral

the disorder or only emerge as secondary features associated with altered cognitive and behavioral performance. Overall, brain connectivity appears to be altered in individuals with ASD with patterns of both under-connectivity and over-connectivity depending on the brain region or network that is being evaluated (Abbott et al. 2016). Such alterations may reduce functional network integration to affect cognitive and behavioral processing in some of the core and comorbid domains. However, the

affect cognitive and behavioral processing in some of the core and comorbid domains. However, the substantial variability in reports of FC alterations across individuals coupled with methodological concerns regarding fMRI data processing (Müller et al. 2011) presents major considerations and limitations for previous FC studies in ASD. Brain connectivity will need to be evaluated in larger samples with sufficient power to subgroup individuals with ASD. These subgroups should be compared to

with sufficient power to subgroup individuals with ASD. These subgroups should be compared to individuals with other neuropsychiatric disorders as well as typically developing controls in order to determine whether any ASD-specific alterations in brain connectivity actually exist and elucidate their potential relationship with differences in the pathogenesis of the disorder.

Definition Brainstem audiometry, sometimes called a brainstem auditory evoked response (BAER) or an auditory brainstem response (ABR), is an electrophysiologic test that assesses the auditory system through the low brainstem. This test can assess hearing sensitivity in individuals who cannot respond to traditional testing; thus, it is often used in newborn hearing screenings and in populations that are nonverbal. The ABR is completed by placing recording electrodes on the individual’s head

that are nonverbal. The ABR is completed by placing recording electrodes on the individual’s head and ears and placing earphones in their ears. Responses are elicited using click and tonal stimuli which are delivered through the earphones. Five waveforms are typically present in the ABR (waves I, II, III, IV, and V); however, wave V is the waveform used for threshold testing. Individuals with autism spectrum disorders might not be able to consistently respond to traditional tests of hearing

autism spectrum disorders might not be able to consistently respond to traditional tests of hearing sensitivity, and therefore, the ABR may be completed to establish hearing sensitivity.

Brainstem Auditory Evoked Potentials (BAEP) are low-amplitude electrical voltage potentials in the brain that are evoked by a sound, often a click, and recorded using electrodes on the scalp (i.e., electroencephalography or EEG). Since the potentials typically have an amplitude around 1 mV, hundreds of trials are averaged together to provide data with adequate signal to noise ratio. BAEPs have been used as a tool to examine brainstem integrity and hearing ability clinically since the 1970s,

been used as a tool to examine brainstem integrity and hearing ability clinically since the 1970s, helping to diagnose tumors and other diseases such as multiple sclerosis. BAEPs are particularly useful with patients who are difficult to test by traditional audiometry, where feed-back is required, because of compromised levels of consciousness, limited communication, or behavioral noncompliance. BAEPs are also useful for detecting subtle changes that may be clinically relevant, and localizing

BAEPs are also useful for detecting subtle changes that may be clinically relevant, and localizing the deficits. The BAEP reflects the function of the auditory nerve (eighth nerve), cochlear nucleus, superior olive, and inferior colliculus, measuring the time it takes an aural stimulus to travel through the auditory pathway in the brainstem. They are thought to measure action potentials and postsynaptic activity propagating along the auditory nerve, and to other regions along the auditory

postsynaptic activity propagating along the auditory nerve, and to other regions along the auditory pathway. When measured in response to a brief stimulus (typically a click) in the ear canal via an inserted earphone or headphone, the elicited waveform response is detected by surface electrodes placed at the base of the scalp and the ear lobes. The BAEP generally includes seven waves, but it is the initial five waves that have been the most extensively studied and are useful for clinical

it is the initial five waves that have been the most extensively studied and are useful for clinical applications. These five waves occur within 6 or 7 ms and are labeled waves I through V. Abnormalities in specific waves are informative, as they are thought to localize the differences to particular parts of the auditory pathway. Wave I is believed to reflect the distal auditory nerve on the ipsilateral side; wave II, proximal auditory nerve on the ipsilateral side; wave III, ipsilateral cochlear

side; wave II, proximal auditory nerve on the ipsilateral side; wave III, ipsilateral cochlear nucleus; wave IV, superior olivary nucleus and adjacent brainstem regions bilaterally; and wave V, distal lateral lemniscus and inferior colliculus on the contralateral side. Interpretation of the BAEP is routinely done by examining the latency and length of these waves and the interpeak intervals between them (IPI), also known as interpeak latencies (IPL). The amplitudes are less frequently

between them (IPI), also known as interpeak latencies (IPL). The amplitudes are less frequently interpreted because they are more variable across individuals, and thought to be less reliable indices of dysfunction. The IPIs are considered particularly important, reflecting the conduction times in the auditory pathway through the brainstem (i.e., auditory nerve then cochlear nerve, cochlear nucleus, and lateral lemniscus). Therefore, longer IPIs are thought to indicate impaired function, possibly

and lateral lemniscus). Therefore, longer IPIs are thought to indicate impaired function, possibly related to the number, synchronicity, or integrity of the neurons firing in these regions. The BAEP is relatively adult-like by 18 months of age, though wave V may continue to mature until 3 or 4 years of age. They differ in females and males, with a slightly shorter latency and higher amplitude in females. More recently, the BAEP has been examined in response to a tone (instead of a click), which

More recently, the BAEP has been examined in response to a tone (instead of a click), which is thought to measure dysfunction more specific to the cochlear regions.

BAERs (brainstem auditory evoked responses; also referred to as brainstem auditory evoked potential, BAEPs, and auditory brainstem response, ABR) measure the electrical voltage potentials in the proximal auditory pathway in response to a noise. This is done via electrodes on the scalp and earlobe (see also definition: “Brainstem Auditory Evoked Potentials”). The noise is most frequently a click, but tones and other sounds have also been used (e.g., Russo et al. 2008). BAERs are thought to

but tones and other sounds have also been used (e.g., Russo et al. 2008). BAERs are thought to reflect the function of the auditory pathway through the brainstem, providing insight into both the level of hearing and the integrity of brainstem function in a given individual. When the noise is a click, BAEPs produce seven waves of activity. The first five of these – labeled waves I through V – have been well characterized, with wave V followed by a negative dip (Stone et al. 2009). These initial five

well characterized, with wave V followed by a negative dip (Stone et al. 2009). These initial five waves occur within about 7 ms. The waves are thought to reflect activation progressing as the aural stimulus moves from more distal regions of the auditory nerve to the more proximal regions. Examining the length of the waves and the latencies between them (the interpeak intervals: IPIs, also known as interpeak latencies IPL) provides insight into whether there is dysfunction along the auditory

as interpeak latencies IPL) provides insight into whether there is dysfunction along the auditory pathway through the brainstem and, potentially, helps to localize that dysfunction. Waves I, III, and V have been particularly well characterized. Wave I is thought to be generated peripherally, at the auditory or cochlear nerve; wave III at the cochlear nuclei; and wave V at the lateral lemniscus. These signals go from the ipsilateral side (waves I to III in the auditory nerve, cochlear nucleus,

These signals go from the ipsilateral side (waves I to III in the auditory nerve, cochlear nucleus, and superior olive) to bilateral brainstem regions (wave IV) to contralateral regions (wave V in the lateral lemniscus and inferior colliculus). The wave structure develops an adult-like architecture in the first few years of life, with maturation starting in more peripheral regions (with waves I and III maturing in the first year) and moving to more central regions (with wave V maturing at 3–4

and III maturing in the first year) and moving to more central regions (with wave V maturing at 3–4 years of age; Fujikawa-Brooks et al. 2010; Moore and Linthicum 2007).

Historical Background Since sensory modulation is disrupted in ASD, with both under- and over-reactivity to sounds, early theories posited that auditory brainstem function might be affected in ASD (Ornitz et al. 1985; modified in Ornitz 1987). To empirically study this possibility, BAERs were used, examining the integrity of this region and the claim of atypical brainstem function in ASD. Early work on autism in the 1970s and early 1980s was promising, suggesting that there may be abnormalities

on autism in the 1970s and early 1980s was promising, suggesting that there may be abnormalities in BAERs in individuals with ASD. A problem, however, was that what aspect of BAERs actually differed in ASD was not consistent across studies (Klin 1993). In addition, BAERs do not require attention or consciousness, making them useful for testing special populations; however, this fact also led to a very heterogeneous sample being tested in many of these early studies. Some of the participants had

very heterogeneous sample being tested in many of these early studies. Some of the participants had known neurological conditions (Klin 1993; Minshew 1991), and in some studies, many individuals had hearing loss (e.g., Taylor et al. 1982), which create an obvious confound when interpreting these studies. Gender has been shown to affect BAERs, with shorter latencies in women. Therefore, gender also has to be considered since a greater proportion of women in the control group could lead to

also has to be considered since a greater proportion of women in the control group could lead to spurious group differences. Indeed, the conclusion that BAERs were abnormal in ASD was disputed in the mid-1980s by work suggesting that the differences reported in the early studies reflected participant characteristics other than ASD (e.g., other neurological disorder, intellectual disability). Courchesne et al. (1985) tested a cohort of high-functioning individuals with ASD, with well-matched

et al. (1985) tested a cohort of high-functioning individuals with ASD, with well-matched controls, and found no differences in the group with ASD. Once the issues discussed above were taken into account – and the reliability of the measures, as methods were still improving – several reviews argued that differences in individuals with ASD were not evident (Minshew 1991) or less likely (Klin 1993). Klin (1993) pointed out that, while BAERS did not provide convincing evidence of brainstem

1993). Klin (1993) pointed out that, while BAERS did not provide convincing evidence of brainstem dysfunction in ASD, they did suggest that peripheral hearing loss might be common in ASD and such hearing loss would be important clinically when treating those with ASD. Tables listing the results and the samples used in these earlier studies are included in Klin (1993) and Wong and Wong (1991).

Current Knowledge More work has led to further inconsistencies in the data, though several important themes have emerged. In all studies, differences in the BAERs of those with ASD are evident in a subset of participants with ASD and, in some cases, their first-degree relatives (Maziade et al. 2000). This indicates that, while abnormal BAERs are not causal, they may reflect a subgroup which would be important to identify clinically (Nagy and Loveland 2002). Thus, there is still potential for

be important to identify clinically (Nagy and Loveland 2002). Thus, there is still potential for abnormal BAERs to be a biomarker for at least a subset of individuals with ASD, providing insight into the disorder. In addition, what is atypical in the BAERs of the individuals with ASD has differed both within and across studies, suggesting that there may be multiple ways to disrupt the auditory pathway through the brainstem. These disruptions generally present as prolongations of the waves or

pathway through the brainstem. These disruptions generally present as prolongations of the waves or IPIs, when they are evident. Nagy and colleagues argue that some of these disruptions may be specific to ASD (e.g., prolongation of waves III to V; on the basis of Bachevalier 1996), while others might be evident in a number of disorders (e.g., speech impairment, ADHD: prolongation of waves I to III) and are potentially related to differences in language acquisition (Nagy and Loveland 2002). In

and are potentially related to differences in language acquisition (Nagy and Loveland 2002). In general, it is not clear whether even the differences that have been identified in ASD are specific to this disorder. However, these differences do not generalize to all developmental disorders. While individuals with Down’s syndrome also display abnormal BAERS, the atypical patterns are distinct from those in autism (Sersen et al. 1990). Finally, abnormalities may have implications clinically, as

those in autism (Sersen et al. 1990). Finally, abnormalities may have implications clinically, as recent work suggests that there may be some experience-dependent plasticity in the BAER wave pattern that is sensitive to auditory training (Chandrasekaran and Kraus 2010; Skoe and Kraus 2010; see Russo et al. 2010 for training in ASD).

The studies in recent years have shown a prolongation of either the wave itself or – relatedly – the IPI (Gillberg et al. 1983; Kwon et al. 2007; Maziade et al. 2000; Rosenhall et al. 2003; Tanguay et al. 1982; Tas et al. 2007; Wong and Wong 1991), though a few early studies indicated a shortening of waves (see Table 1 in Rosenhall et al. 2003 for a summary of earlier studies). Other conditions, such as Down’s syndrome, may tend to exhibit shorter IPIs (Sersen et al. 1990). This longer latency

such as Down’s syndrome, may tend to exhibit shorter IPIs (Sersen et al. 1990). This longer latency is evident in a subset of those with ASD, generally not more than about 50% of the sample. Which wave (I, III, or V) or IPI the group differences are evident differs between studies; however, wave V appears to be most often affected, especially in the left (L) ear. (See Table 1 for a summary of recent results since 2000 to click tones in BAERs.) This may reflect a more general slowing of auditory

results since 2000 to click tones in BAERs.) This may reflect a more general slowing of auditory processing that differs across this heterogeneous population. This pattern is also evident in many earlier studies. Skoff and colleagues reported prolonged III–V IPIs in the L ear in 33% of their sample (1980). Thivierge et al. found that 80% of their populations had longer I–V and III–V IPIs (1990). Wong and Wong (1991) reported increased latencies of wave V, and I–III, III–V, and I–V IPIs, in

Wong and Wong (1991) reported increased latencies of wave V, and I–III, III–V, and I–V IPIs, in sedated individuals with autistic “features,” but not in those with intellectual disability. Later studies (summarized in Table 1) reported longer IPIs I–III in both individuals with ASD and their first-degree family members (Maziade et al. 2000). However, 52% of the families with ASD had normal BAEPs in everyone in the family. Rosenhall et al. (2003) reported that 58% of children with ASD had longer

everyone in the family. Rosenhall et al. (2003) reported that 58% of children with ASD had longer latencies in waves I and V and IPI in III–V. This study included a large sample, but a portion of the sample had hearing loss. Kwon et al. (2007) reported longer I–V and III–V and wave V in large group of those on the spectrum (ASD) (N ¼ 71), but not in those with autism defined more strictly (N ¼ 22). The take-home message from Kwon and colleagues was that ASD might have a lot of physiological

22). The take-home message from Kwon and colleagues was that ASD might have a lot of physiological overlap with central auditory processing disorder (CAPD), on the basis of the ABR results, and that this comorbidity might have clinical implications. In contrast to these positive results, several studies have reported no difference between groups to click stimuli (Courchesne et al. 1985; Rumsey 1984; Tharpe et al. 2006).

Most of the studies do not have a well-matched control group (but see Courchesne et al. 1985), although many of the recent ones do a test for hearing impairment before including participants in the results. In addition, since BAERs are thought to be relatively resistant to age, function level, or other potential confounds such as the effects of sedation, these differences may generally not affect the results or do so only subtly. However, in these studies, there are still issues with the

affect the results or do so only subtly. However, in these studies, there are still issues with the control groups. One such issue is gender. Since females have shorter IPIs, including too many in the control group could bias the IPIs to be shorter in controls and therefore appear longer in ASD. For instance, Magliaro et al. (2010) found prolongation in III and V and IPIs I–III and I–V, but this study included a substantial proportion of females in the control group. Recent studies have

this study included a substantial proportion of females in the control group. Recent studies have attempted to control for gender (Russo et al. 2008), since there are almost always a few more females in the control group, and have found differences. Another issue is that a number of subjects with serious hearing loss and ASD have been identified across studies (Rosenhall et al. 2003; Tas et al. 2007). This is an important issue clinically, as it may not be immediately evident in children with

2007). This is an important issue clinically, as it may not be immediately evident in children with ASD that they have hearing loss (Klin 1993). So, while this emphasizes the importance of examining hearing in those with ASD, it also presents confounds in the available data. For instance, Tas (2007) reported a longer III–V bilaterally in young children with ASD. However, five children were identified as having hearing loss, and, while the three with severe loss were excluded, the two with mild

as having hearing loss, and, while the three with severe loss were excluded, the two with mild hearing loss were not. This study also brings up the issue of using quite young children, around 2 years old (see also Kwon et al. 2007; Wong and Wong 1991). While the BAER architecture is relatively mature by 18 months of age, there is some evidence that wave V continues to mature until around 3 or 4 years old. While age was approximately matched in many of the studies, differential development

4 years old. While age was approximately matched in many of the studies, differential development across groups may still be influencing the results. Several studies have examined the BAER response to sounds other than clicks, and these results suggest that group differences might be more likely with sounds other than with the traditional click response. Russo et al. (2008) examined pitch encoding. They found that 20% of children on the autism spectrum had difficulty with pitch, while none showed

They found that 20% of children on the autism spectrum had difficulty with pitch, while none showed abnormal BAERs to click sounds, but this result was not correlated with language outcome. The ASD group had more boys and lower IQ, but the results did not change when these issues were controlled statistically. Tharpe et al. (2006) found differences in the BAER when the stimulus was a pure tone, but not when it was a click. This difference was evident in 11 of 22 individuals with ASD.

tone, but not when it was a click. This difference was evident in 11 of 22 individuals with ASD. Fujiwaka-Brooks and colleagues (2010) included more clicks per second (61–91 instead of 11–25 used typically), a stressor that is known to lead to longer latencies typically, especially in wave V. These investigators found differences in left ear only, with a trend for latency of wave I and significant results of wave V. They also report a negative correlation between the latency of wave V and verbal

results of wave V. They also report a negative correlation between the latency of wave V and verbal IQ, suggesting a relationship between this wave and language skill. About half the sample showed the difference in the L ear for wave V. This group points out the importance of testing from both ears, as some studies have only tested the right ear.

| Study | N | Potential confounds? | Prolongation? | Prolongation? IPIs I–III, III–V Latencies I, III, V |
|---|---|---|---|---| | Tas et al. (2007) | N ¼ 30 ASD Individuals with ASD sedated controls not N ¼ 15 controls M age ¼ 3 year | None | III–V |
| Rosenhall et al. (2003) | N ¼ 101 ASD with normal hearing N ¼ 59 controls M age ¼ 8 year | Controls slightly older than individuals with ASD | I, V | III–V |

| Fujikawa-Brooks et al. (2010) | N ¼ 20 ASD N ¼ 20 controls M age ¼ 10 year | None | V in L ear |
| Maziade et al. (2000) | N ¼ 73 ASD, 251 relatives N ¼ 521 controls M age ¼ 7 year | Not reported | Longer I–III and I–V in ASD and first-degree relatives especially siblings |
| Magliaro et al. (2010) | N ¼ 16 ASD N ¼ 25 controls M age ¼ 12 year | Many more F in control group (16 vs. 1) | III, V | I–III, I–V |

| Kwon et al. (2007) | N ¼ 71 ASD (22 autism) N ¼ 50 controls M age ¼ 3 year | May have had other medical issues, 2 cases with brainstem abnormalities | V in L ear | I–V, III–V bilateral in larger more heterogeneous ASD group only |

Future Directions These studies indicate that BAERs may be abnormal in ASD, but this is unlikely to reflect important information about etiology across the spectrum. These abnormal BAERs may reflect disrupted auditory processing, possibly deep in the brainstem. There is not convincing evidence that it is specific to ASD. However, that differences are evident for only a subset of participants with ASD might prove useful for identifying subgroups of ASD. In addition, differences in the

with ASD might prove useful for identifying subgroups of ASD. In addition, differences in the developmental pattern in ASD have not been studied but may be enlightening. While TD individuals may show little change in the BAERs after age 4 or due to intellectual disability, this pattern may not be true of those with ASD. Such developmental differences could help explain the discrepancy between the findings of Courchesne et al. (1985) with a high-functioning set of adults with ASD and well-matched

findings of Courchesne et al. (1985) with a high-functioning set of adults with ASD and well-matched controls and the more recent work that generally focuses on children, often very young ones (Kwon et al. 2007; Tas et al. 2007; Wong and Wong 1991). In addition, recent studies have begun to identify plasticity in the BAER in the auditory pathway in the brainstem when training takes place (Chandrasekaran and Kraus 2010; Skoe and Kraus 2010; see Russo et al. 2010 for studies in ASD), and

(Chandrasekaran and Kraus 2010; Skoe and Kraus 2010; see Russo et al. 2010 for studies in ASD), and high-functioning individuals with ASD may be able to compensate for their social and communication issues and engage further through language. This plasticity may help to explain the variability in the BAER differences in ASD, in addition to other differences across the spectrum, as well as help to inform potential interventions.

In Brazil, Autism Spectrum Disorder (ASD) is considerably understudied. A single epidemiological study has been conducted, assessing children from one city in the southeast. Results indicated an estimated prevalence of 27.2/10,000, which is believed to be an underestimation due to methodological issues (Paula et al. 2011). If the international prevalence 1% is true in Brazil, approximately 1.5–2 million Brazilian children are affected by ASD. The National Health System (SUS), still in constant

million Brazilian children are affected by ASD. The National Health System (SUS), still in constant construction, also has shortcomings. Although a national system, it is organized in different ways around the country. The SUS recommends that children with autism have comprehensive care of their needs. Health care occurs primarily in units of ambulatory medical care (AMAS) and psychosocial care centers (CAPS). The Brazilian health system is composed by the primary care for simple demands (Basic

(CAPS). The Brazilian health system is composed by the primary care for simple demands (Basic Health Units – UBS, Health Nuclei for Family Support – NASF, and Family Health Units – USF), secondary care (CAPS – Outpatient Mental Health) for more difficult cases without need of hospitalization, and tertiary care for hospitalizations and emergency room needs (General Hospitals). It is sure that this network needs to be improved: the CAPS only recently started to assist children with autism in a

network needs to be improved: the CAPS only recently started to assist children with autism in a more regular way. There are some welfare agency in Brazil that plays an important role in the diligence of autism patients and families, such as ABRA – Associação Brasileira de Autismo brings together corporations related to autism in Brazil and represents the interests of Autism patients in different national councils such as the health, social, and the rights of the individual council; AMA –

national councils such as the health, social, and the rights of the individual council; AMA – Associação de Amigos do Autista; and the APAE – Associação de Pais e Amigos dos Excepcionais, and they have an established center in most Brazilian states.

They offer different activities for autism patients related to socialization, day care activities, and communication; AUMA – Associação dos Amigos da Criança Autista – since 1990 has the major objective of developing educational programs of social adaptation for autism patients and families. In São Paulo, the richest state in the country, the health system is designed in a way that the Basic Health Units (UBS), teams of the Family Health Strategy (family physicians, nurses, and dentists), with

Units (UBS), teams of the Family Health Strategy (family physicians, nurses, and dentists), with support from the Family Assistance Center (NASF) are the first place where cases arrive to make diagnosis and also less-severity cases are kept for treatment. The instruments for early identification and diagnosis should be present in established practice in these centers, which unfortunately does not happen. The CAPS is responsible for the establishment of a therapeutic project and is the reference

happen. The CAPS is responsible for the establishment of a therapeutic project and is the reference for the UBS (secondary care, in day hospital care scheme, more intensive, with intermediate function between the outpatient and inpatient) and when faced with cases of high complexity, CAPS can trigger other places in the network, as services belonging to the university or references to specific service for ASD. São Paulo is the unique state that has a specific CAPS for adults with autism.

service for ASD. São Paulo is the unique state that has a specific CAPS for adults with autism. Regarding education, children with autism should be included in regular education (inclusive education), which should provide suitable conditions for integration and development. Teachers and school staff should receive adequate training to work with children with autism. In cases that regular education is not possible given the intensity of symptoms and difficulty of the student to adapt, the option

is not possible given the intensity of symptoms and difficulty of the student to adapt, the option is a special school. Getting a place in special school is very difficult, and parents often have to appeal to justice to have their rights guaranteed. In Brazil, people with autism have all the rights provided for in specific laws for people with disabilities as well as international standards signed by Brazil, such as United Nation Convention on the Rights of Persons with Disabilities. Moreover,

by Brazil, such as United Nation Convention on the Rights of Persons with Disabilities. Moreover, children and adolescents also have all the rights stated in the Statute of Children and Adolescents and the elderly, i.e., over 60 years old, have also the rights of the elderly. People with autism have also the special protection of Federal Law, which ensures proper treatment in public and private health facilities for the specific pathology they have. If the person with autism is demonstrably in

health facilities for the specific pathology they have. If the person with autism is demonstrably in need, he/she is entitled to a free pass in state and interstate transportation.

The law, establishing the National Policy on Protection of Rights for Persons with Autism Spectrum Disorder, was published in the Official Newspaper in Brazil in December 2012 giving support and emphasis on rights and proper treatment, as well as access to education and to vocational teaching, housing, labor market, and social security and welfare. In cases of proven need, the person with autism spectrum disorder, included in common classes in regular education, will be entitled to have a

spectrum disorder, included in common classes in regular education, will be entitled to have a specialized companion during the activities done in the school. Among the points set out in the Law is community participation in the formulation of public policies for people with autism, in addition to implementation, monitoring, and evaluation of the person with autism. In addition to these duties, the benefit of greater importance to the disabled person and therefore to person with autism is the

the benefit of greater importance to the disabled person and therefore to person with autism is the Continuous Cash Benefit, a social assistance benefit which was regulated by the Organic Law of Social Assistance – LOAS. To get the benefit, the family income must be less than one fourth of the minimum wage, and proof of disability and level of temporary or permanent disability for independent life and work must be attested by medical and social expertise of the INSS. In the next section, we will

and work must be attested by medical and social expertise of the INSS. In the next section, we will explore diagnosis and treatment options for autism with an emphasis on research performed in Brazil and the Brazilian limitations.

Instruments for Diagnosis and Standard Scales in Brazil The official diagnosis of ASD in Brazil follows the ICD-10 criteria (WHO 1993), performed by interviews held with parents and caregivers and by clinical observation of the child. To assist in the diagnostic process, several scales and interviews were validated to Portuguese. Table 1 shows the translated and validated scales and instruments for use in Brazil: The ATA (Escala d’Avaluació dels Trests Autistes), ABC (Autism Behavior

for use in Brazil: The ATA (Escala d’Avaluació dels Trests Autistes), ABC (Autism Behavior Checklist), M-CHAT (Modified Checklist for Autism in Toddlers), and the ASQ (Autism Screening Questionnaire) are used for screening, while the CARS (Childhood Autism Rating Scale) and ADI-R (Autism Diagnostic Interview-reviewed) are used for diagnosis.

| Description of instruments | Authors | Proposal | Age of administration | Reliability | Validation for Brazil |
|---|---|---|---|---|---| | The Autistic Traits of Evaluation Scale (ATA) | Ballabriga et al. 1994 | Scale of screening based on observation | Over 2 years | Favors tracking the evolution of the disease | Assumpção et al. 1999 |

| Autism Behavior Checklist (ABC) | Krug et al. 1980 | Direct observation and interview with parents and caregivers for screening | Over 18 months | Identifies autism in both clinical and educational contexts | Marteleto and Pedromônico 2005 |
| Childhood Autism Rating Scale (CARS) | Schopler et al. 1986 | Assessment scale for observation of behavior for screening | Over 24 months | High degree of internal consistency and reliability | Pereira and Wagner 2008 |

| Autism Screening Questionnaire (ASQ) | Berument et al. 1999 | Self-administration questionnaire for parents and caregivers for screening | Over 6 years | Favors the large-scale use for screening of suspected cases of autism | Sato et al. 2009 |

| Autism Diagnostic Interview (ADI-R) | Lord et al. 1994 | Semi-structured interviews with parents or guardians for diagnosis and research on autism | Over 18 months | Validated and reliable instrument for diagnosis of (GDD** TGD) for ASD in preschool aged | Becker et al. 2012 |

The ATA (Autistic Traits of Evaluation Scale) was the first scale to be translated and adapted in Brazil by Assumpção Jr. et al. The translation of the ABC made by Marteleto and Pedromônico in 2005 added the direct observation of the child as well as interviews with parents and caregivers. The M-CHAT (Modified scale for screening autism) was translated and adapted to Portuguese in Brazil by Mirella Fiuza Losapio and Milena Pereira Pondé 2008 creating the possibility of early screening, which

Fiuza Losapio and Milena Pereira Pondé 2008 creating the possibility of early screening, which could be done in public health at the primary care level. The questionnaire for children older than 6 years has been translated and validated in Brazil by Sato et al. in 2009. But, in Brazil there is still no study comparing the use of these scales in our social reality, and it would be important to establish protocols for screening. The CARS is a scale that helps identify children with autism and it

protocols for screening. The CARS is a scale that helps identify children with autism and it distinguishes from children with developmental impairment and without autism. Its importance is to differentiate mild-moderate autism from severe the CARS has two versions. One observational and one held with parents or guardians. The scale for parents was translated and validated in 2007 in Brazil (Riesgo and Wagner 2008). The ADI has been translated into 11 languages, and it is cited as the gold

and Wagner 2008). The ADI has been translated into 11 languages, and it is cited as the gold standard for diagnosis of autism. In Brazil, the translation and validation of the ADI-R (Becker et al. 2012) has recently been published. It is important to note the CARS alone does not indicate diagnosis (Riesgo and Wagner 2008), it must be used together with the DSM IV diagnostic criteria for autism. Santos et al. (2012) concluded that the CARS fails in the diagnosis of some cases of autism, while

Santos et al. (2012) concluded that the CARS fails in the diagnosis of some cases of autism, while the ABC may result in overdiagnosis, and it is best to combine the use of both. Corroborating studies show that instruments used in isolation may not be sufficient, and it is important to use at least one questionnaire with parents and an observation scale with the kid. The administration of the ADI-R is complex and lengthy requiring trained professionals to such situations that are nonexistent in

is complex and lengthy requiring trained professionals to such situations that are nonexistent in our society, even the little time availability of the ADI-R for use in Brazil. In an attempt to use instruments already validated and translated and applied in Brazilian clinical practice, Duarte et al. (2003) examined the validity of the CBCL/4-18 (Child Behavior Checklist) for the identification of autism spectrum disorders in the Brazilian population. The CBCL was validated for the administration

spectrum disorders in the Brazilian population. The CBCL was validated for the administration to the Brazilian population by Bordin et al. (1995). As Albores-Gallo et al. (2008) pointed out, the CBCL is an important instrument to assess the most frequent comorbidities in autism spectrum disorders, such as attention problems, depression, and anxiety, and not automatically valid for diagnosis. Some Brazilian researchers have been working in the development of national scales for fast and easy

Brazilian researchers have been working in the development of national scales for fast and easy administration for early detection of autistic symptoms (children younger than 18 months). The Clinical Indicators of Risk for Child Development (IRDI) was developed in Brazil, and it has the ability to detect a trend of occurrence of problems expressed in the first 18 months of life that extends throughout the development of the child at least until the sixth year, generating impact on the quality of

the development of the child at least until the sixth year, generating impact on the quality of life of the child (Kupfer et al. 2010). They are currently working on the validation of the IRDI for large-scale administration in Brazil, in partnership with the Brazilian government. Braido (2006) reported different behaviors and properties of behaviors (e.g., response latency) that already showed signs of delay in the development of babies (1 year old) who were lately diagnosed with autism.

signs of delay in the development of babies (1 year old) who were lately diagnosed with autism. Following this line of research to identify behaviors, Bagaiolo et al. (2010) used the description of the child development from 0 to 3 years in order to analyze home videos of a baby who was lately diagnosed with autism (diagnosed with 3 years of age). Different failures in aspects of child development, before 3 years of age, were analyzed for association with autism risk. This work is still in

before 3 years of age, were analyzed for association with autism risk. This work is still in progress requiring replication. Regarded as the gold standard for diagnosis, the Autism Diagnostic Observation Scale – ADOS (Lord et al. 1994, 2000), ADOS-G has been already translated (personal communication by Maria Clara Pacifico, Cristiane S de Paula, and Guiomar Oliveira 2012) but has not yet been published or validated. The limitation of trained human resources for its administration also prevents

or validated. The limitation of trained human resources for its administration also prevents the use of the ADOS-G in clinical practice.

Neuropsychological and Speech Pathology Evaluation In Brazil, several instruments are used for neuropsychological and speech pathology assessment, and there is no standardized protocol. The use of Wechsler Intelligence Scale for Children-III, Wechsler Adult Intelligence Scale-III, and ADAPTATIVE BEHAVIOR SCALES OF VINELAND are recommended for assessment for autism in Brazil. From the standpoint of speech pathology, adapted scales and instruments to the Brazilian society are ABFW tests – Child

of speech pathology, adapted scales and instruments to the Brazilian society are ABFW tests – Child language test in the areas of phonology, vocabulary, fluency, and pragmatics (Andrade et al. 2004); PPVT– Peabody Picture Vocabulary Test (Capovilla and Capovilla 1997); Language Exam (Braz and Pellicciotti 1988); the Evaluation of Symbolic Maturity (Befı-Lopes et al. 2000); and the language development evaluation (Menezes 2004).

Genetic Evaluation in Brazilian Clinical Practice In terms of familial and genetic studies conducted in Brazil, we emphasized the study by Mecca et al. (2011) that aimed to track the occurrence of signs and symptoms of ASD in siblings of individuals with this diagnosis. The data indicate higher rates than those reported in the literature (2–6 %) and approach the findings that report 10 % of familial recurrence in dizygotic twins. This result provides evidences of possible neurogenetic factors

recurrence in dizygotic twins. This result provides evidences of possible neurogenetic factors to explain the occurrence of ASD in relatives of studied probands and emphasizes the need to make the tracking of this disorder in children who are not only evaluated but also their brothers. Brazil is beginning to contribute to genetic studies in the field of ASD and has adequate technology to conduct them. In the last 5 years (2008–2013), more than 11 genetic studies in patients with ASD were made in

In the last 5 years (2008–2013), more than 11 genetic studies in patients with ASD were made in Brazil, most of which were case studies and some association studies, and case–control or family studies (simplex or multiplex) (Kuczynski et al. 2009; Griesi-Oliveira et al. 2012; Mulatinho et al. 2012; Baruffiet al. 2012; Griesi-Oliveira et al. 2012; Christofolini et al. 2012; Longo et al. 2009; Castro et al. 2010; Orabona et al. 2009; Campos Junior et al. 2011). Although the Brazilian researches

et al. 2010; Orabona et al. 2009; Campos Junior et al. 2011). Although the Brazilian researches have made some contributions in the genetics of ASD, there is no panel for gene diagnosis in the Brazilian population yet, and the genetic evaluation is not part of the systematic evaluations in private clinics or public ones.

Overview of Current Treatments and Research Related to Treatment Strategies In Brazil, it is recommended to follow the interventions followed by ABA (Applied Behavior Analysis), TEACCH (Treatment and Education of Autistic and related Communication handicapped Children), and PECS (Picture Exchange Communication System) in order to maximize language acquisition and improve communication skills. All the AMA – Associação de Amigos do Autista – in most of Brazilian regions offer different

All the AMA – Associação de Amigos do Autista – in most of Brazilian regions offer different activities mainly based on TEACCH and PECS. Due to the high cost of professional training and the difficulty of administering such interventions in Brazil, it is needed that the research related to modifications of these therapies being either in time, performance in groups, or frequency. Below we present examples of work groups of Brazilian researchers studying single pre-evaluations for appropriateness

of work groups of Brazilian researchers studying single pre-evaluations for appropriateness of inclusion of children at different levels of PECS, time of administration of it as well as the speech pathology therapies in individual or in pairs.

The PECS is a simple and portable equipment, especially produced to ensure that communication with autistic children occurs in spite of their speech difficulties, but previous studies (Flippin et al. (2010) reported that many failures in the PECS training may be due to the fact that the child has not acquired all conditional discrimination training required. So before you start training the PECS, it is important to assess whether the individual already has such discrimination. In 2003, Guilhardi

is important to assess whether the individual already has such discrimination. In 2003, Guilhardi compared the performance of participants in ABLA (Assessment of Basic Learning Abilities) and conditional discrimination training and equivalence testing. The author aimed to investigate whether the ABLA test results could predict the performance of children with typical development and atypical development (autism, cerebral palsy, congenital syndromes, etc.) in tasks involving the same type of

(autism, cerebral palsy, congenital syndromes, etc.) in tasks involving the same type of stimulus. Guilhardi (2003) concluded that the predictive power of the ABLA for training equivalence does not happen to all participants and also there were no differences in predictive ability between types of conditional discrimination tests. In Brazil, Godoi et al. (2008) made a study of two cases to investigate the effectiveness of PECS in terms of assessing the amount of training necessary to acquire

the effectiveness of PECS in terms of assessing the amount of training necessary to acquire the skills involved in functional communication exchanging pictures. The authors measured also some side effects of PECS training, i.e., the interference of training on the frequency and appropriate verbalizations and about learning other behaviors specific to each participant. Parallel to the PECS training, additional training for other behaviors was done. These additional training involved differential

additional training for other behaviors was done. These additional training involved differential reinforcement and fading out physical tips. As a side effect of this training, Godoi et al. (2008) pointed out the increasing frequency of verbalizations of both groups of participants. Furthermore, according to the authors, the structured and concrete features of the training contributed to the increased frequency of specific behaviors of each participant and independence in an everyday activity.

frequency of specific behaviors of each participant and independence in an everyday activity. Aiming to understand even more specifically the effects of picture exchange communication on language acquisition, Guilhardi (2009) investigated the functional independence of tacts and mands between verbal responses based on selection of stimuli (PECS). According to the author, the results showed functional independence between operant tacts and mands with verbal responses based on the selection of

independence between operant tacts and mands with verbal responses based on the selection of stimuli.

Cardoso and Fernandes (2006) and Fernandes et al. (2008) did studies with children and adolescents with psychiatric diagnosis within the autistic spectrum at the beginning of the process of speech pathology therapy and they were divided into three groups (individual language therapy, child in a group with a coordinator, child in a group without a coordinator) according to the therapeutic intervention received for a period of 6 months; the results indicated no statistically significant

intervention received for a period of 6 months; the results indicated no statistically significant differences between the groups; however, the group with most progress during the specific period of differentiated intervention was the one where the individuals were treated with a coordinator. The most interesting was that in none of the groups decrease in the levels of improvement obtained after a period of 6 months was observed, and in some situations, the number of individuals with improvement

period of 6 months was observed, and in some situations, the number of individuals with improvement increased after this period. The results of this study reinforce the adequacy of procedures for determining the individual profile of abilities and disabilities of each individual as a basis for definitions regarding to the adopted intervention model.

In terms of pharmacological treatments, not all medications are available in the SUS and there are restrictive conditions according to diagnosis. For example, the majority of atypical antipsychotics are only offered to individuals with the diagnosis of schizophrenia. Besides, we do not have proper clinical trials performed in our country to examine the use of medications in autism. Despite methodological limitations, the study of Novaes et al. (2008) concluded that pharmacological interventions

limitations, the study of Novaes et al. (2008) concluded that pharmacological interventions with second-generation antipsychotics seemed useful for the control of behavioral disorders such as psychomotor agitation and aggressive behavior in a sample of Brazilian patients with autistic spectrum disorders corroborating worldwide studies in the area.

Priorities and Future Directions A systematic review of the Brazilian scientific literature on ASD showed a significant increase in scientific production in this subject over the last 2 years (Teixeira et al. 2010). On the other hand, it showed that most publications are not focused on subjects that can contribute significantly to the improvement of public health relating to autism in Brazil. Most publications make references to intervention studies without controls and small convenience samples,

make references to intervention studies without controls and small convenience samples, and the use of validated diagnostic and neuropsychosocial instruments are still required.

Another intriguing finding is the extreme concentration of scientific production in only two regions of the country. Researchers from São Paulo and Rio Grande do Sul are the first authors in 90 % of papers published between 2002 and 2009 (Teixeira et al. 2010). In a recent editorial, De Paula et al. 2011 list the barriers and difficulties as well as the priority areas for investment in autism in Brazil. Some identified challenges include lack of specific funding to support autism research, lack of

Some identified challenges include lack of specific funding to support autism research, lack of national multicenter projects, lack of trained researchers and clinicians in various disciplines, lack of robust scientific studies, and lack of campaigns to increase knowledge and understanding by the general public and professionals in education and health. The priorities identified for response to the challenges encountered are by (De Paula et al. 2011).

1.  Research areas – to build capacity of research in various disciplines through programs of research training and training of clinicians, including diagnostic skills and tools for early detection and interventions
2.  Awareness – to raise public understanding and improve public perception of autism by making information more accessible to the public

3.  Services – to build capacity for services in Brazil among professionals and in community-based settings, to establish training program for screening early detection and intervention strategies
All these activities are very important to improve the understanding and assistance of autism in Brazil.

The Behavior Rating Inventory of Executive Function (BRIEF) is a questionnaire that assesses executive functioning behaviors of school-aged children, ages 5–18 (Gioia et al. 2000). Executive functioning is the ability to actively engage in an assortment of interrelated processes that are responsible for guiding goal-directed cognitive, emotional, and behavioral functioning. Both parent and teacher rating forms of the BRIEF exist, providing opportunities to rate executive functioning across

rating forms of the BRIEF exist, providing opportunities to rate executive functioning across home and school settings. The BRIEF is appropriate for the assessment of children with a variety of developmental, neurological, psychiatric, and medical conditions. It has also been normed and applied in samples of children with autism spectrum disorder (ASD).

The BRIEF consists of 86 items that cluster into eight clinical scales reflecting different aspects of executive functioning. The scales are entitled: Inhibit, Shift, Emotional Control, Initiate, Working Memory, Plan/Organize, Organization of Materials, and Monitor. Three of these scales combine to create the Behavioral Regulation Index (BRI), and five comprise the Metacognition Index (MI). All eight clinical scales of the BRIEF combine to yield the Global Executive Composite (GEC).

The BRI reflects the ability to shift cognitive set and to modulate behavior and emotion by exerting appropriate inhibitory control. The BRI is comprised of the Inhibit, Shift, and Emotional Control scales. The Inhibit scale assesses the ability to resist acting on an impulse or refrain from engaging in an impulsive behavior as appropriate to the situation. The Shift scale measures the ability to respond to changing circumstantial demands by flexibly transitioning from one activity, situation, or

to changing circumstantial demands by flexibly transitioning from one activity, situation, or aspect of a problem to another. The Emotional Control scale quantifies the ability to regulate emotions and display emotional reactions that are situationally and developmentally appropriate.

The MI reflects the ability to cognitively manage tasks by effectively initiating, planning, organizing, and monitoring goal-oriented behaviors. The MI is comprised of the Initiate, Working Memory, Plan/Organize, Organization of Materials, and Monitor scales. The Initiate scale measures the ability to independently begin a task or activity, including generating ideas or problem-solving strategies. The Working Memory scale assesses the ability to hold information in mind and to mentally

The Working Memory scale assesses the ability to hold information in mind and to mentally manipulate information for the purpose of completing a task. The capacity to effectively sustain performance and attention is also integral to items on this scale. The Plan/Organize scale evaluates the ability to apply order to information, anticipate future events, set goals, and develop appropriate, often sequential, steps in the service of task completion. The Organization of Materials scale quantifies

sequential, steps in the service of task completion. The Organization of Materials scale quantifies the child’s ability to organize his or her work and play activities, as well as environment (e.g., possessions, storage, and work spaces). The Monitor scale assesses the ability to continuously engage in work-checking behaviors in order to ensure attainment of the designated goal. The scale also measures the child’s ability to continuously evaluate how his or her behavior affects others.

In addition to the primary clinical scales, the questionnaire yields two validity scales, assessing inconsistency and negativity of the reporter. The Inconsistency scale of the BRIEF consists of ten pairs of items that are strongly correlated with one another. This scale is included in order to measure rater consistency. The Negativity scale is comprised of the nine items that were least frequently rated as “often” in the normative sample. High Negativity scale scores can indicate an

frequently rated as “often” in the normative sample. High Negativity scale scores can indicate an excessively negative perception on the part of the rater, though at times they are also seen in profiles of children with very high levels of executive dysfunction.

The BRIEF is intended to be completed in a single sitting, requiring approximately 10–15 minutes. Each scale and summary index yields a T score, which have a mean of 50 and a standard deviation of 10. Scores above 65 are considered clinically elevated. Percentile scores are also provided. While the BRIEF can be administered by individuals who do not possess formal training, interpretation of scores requires relevant graduate training in the field of psychology.

Historical Background The BRIEF was developed by neuropsychologists Gerard Gioia, PhD, Peter Isquith, PhD, Steven Guy, PhD, and Lauren Kenworthy, PhD, and published in 2000 by Psychological Assessment Resources, Inc. It was designed to measure children’s executive functioning in real-world settings, as observed by parents, teachers, and caregivers. BRIEF items were generated from clinical interviews conducted by the authors, based on common concerns elicited from parents and teachers. The

conducted by the authors, based on common concerns elicited from parents and teachers. The initial draft of the questionnaire included 129 items for the parent form and 127 items for the teacher form. The set of items was determined to match a fourth- to fifth-grade reading level, as intended by the authors. Following initial item development, twelve neuropsychologists reviewed and categorized all items into their appropriate executive functioning domains. Principal factor analysis was then

all items into their appropriate executive functioning domains. Principal factor analysis was then conducted to further clarify clustering of items. In the final version of the BRIEF, over 80 % of items retained had at least 75 % agreement among authors and expert raters regarding how well they fell within their designated scales.

Within the BRIEF, moderate to high correlations were found between most scales. Therefore, in order to strengthen the validity of the BRIEF scale structure, factor analysis was conducted, using normative and clinical samples for both the parent and teacher forms. Based on the results of a principal factor analysis, a two-factor structure was identified. This two-factor solution accounted for 74 % of the variance in parent forms and 83 % of the variance in teacher forms. The two factors derived

of the variance in parent forms and 83 % of the variance in teacher forms. The two factors derived from this analysis, entitled the Behavior Regulation Index (BRI) and Metacognition Index (MI), subsequently have been used to capture all eight scales of the BRIEF. The BRIEF represents the first informant report measure of executive functioning available for use with children and adolescents. Strengths include the ability to measure multiple domains of executive functioning simultaneously. This

include the ability to measure multiple domains of executive functioning simultaneously. This feature can be contrasted with research and clinical task-based assessments, which often quantify isolated abilities in distinct executive domains. By utilizing caregiver report of daily functioning, the BRIEF also claims high ecological validity, as findings reflect, and are generalizable to, executive functioning capacity in various real-life settings (Kenworthy et al. 2008). Criticisms of the BRIEF

functioning capacity in various real-life settings (Kenworthy et al. 2008). Criticisms of the BRIEF concern the validity and potential for bias inherent in any informant report measure. In addition, concerns have been raised about whether executive functions can truly be parsed into individual domains, as is suggested by the eight BRIEF scales. It has been noted that such parsing of the broader executive functioning construct is not yet well grounded in neuroimaging research regarding brain

executive functioning construct is not yet well grounded in neuroimaging research regarding brain function (Denckla 2002).

Psychometric Data The BRIEF was standardized and validated in a sample of school-aged children from diverse racial, socioeconomic, and geographic backgrounds. The normative sample included 1,419 parent forms and 720 teacher forms, for children between 5 and 18 years of age, attending public and private schools in Maryland. Approximately half of the normative sample was male, and no children had a history of special education or psychiatric medication. Among parent responders, 83 % were

had a history of special education or psychiatric medication. Among parent responders, 83 % were mothers.

From the normative raw data, T scores and percentile norms were developed for each of the eight BRIEF scales, the BRI and MI, and the GEC. T scores were generated using a linear transformation of raw scores. Percentiles were assigned based on the distribution of raw scores for each scale, index, and GEC. As for other behavior rating scales, BRIEF scales are positively skewed, so that the majority of cases cluster at the lower, normal end of each scale, while scores in the tail represent

of cases cluster at the lower, normal end of each scale, while scores in the tail represent deviations from the norm. Several aspects of test reliability were assessed using data from the normative sample. Internal consistency quantifies the degree to which items within individual scales are consistent with each other and is statistically evaluated using Cronbach’s alpha coefficient. Psychometric data indicated that across all individual scales and composite indices, in both parent and teacher

data indicated that across all individual scales and composite indices, in both parent and teacher forms, Cronbach’s alpha values ranged from 0.80 to 0.98. These values indicate good to excellent internal reliability within scales. Inter-rater reliability was also measured to determine consensus across parent and teacher forms completed for a subset of 296 children within the normative sample. Inter-rater reliability was found to range from 0.15 to 0.50 across the different scales and

Inter-rater reliability was found to range from 0.15 to 0.50 across the different scales and composites. These values indicate low reliability across raters; however, the authors note that low inter-rater reliability is expected given that these forms are intended to capture any existing variability in children’s behavior across different environmental settings. Inter-rater reliability was lowest for the Initiate and Organization of Materials scales; in general, parents tended to endorse more

for the Initiate and Organization of Materials scales; in general, parents tended to endorse more problematic functioning than did teachers.

Finally, test-retest reliability was assessed in order to measure how consistent individual raters were in reporting on a child’s behavior at differ-ent but proximal time points. For the parent form, this data was computed from a subsample of 54 participants within the normative sample with an average interval of 2 weeks between questionnaire completions for a single rater. Test-retest reliability values ranged from 0.76 to 0.85 across individual scales and from 0.84 to 0.88 for the three

values ranged from 0.76 to 0.85 across individual scales and from 0.84 to 0.88 for the three composites, indicating good reliability. For the teacher form, test-retest reliability was computed in a subsample of 41 participants, over an average interval of 3.5 weeks. Test-retest reliability for the teacher form ranged from 0.83 to 0.92 for individual BRIEF scales and from 0.90 to 0.92 for the BRI, MI, and GEC. These values indicate good test-retest reliability for individual scales, and

the BRI, MI, and GEC. These values indicate good test-retest reliability for individual scales, and excellent reliability for the composites when rated twice by teachers. In their manual, the BRIEF authors also address two aspects of test validity or the extent to which the BRIEF measures what it proposes to measure. Content validity, reflects the degree to which the content of the test instrument itself (i.e., BRIEF items) adequately captures all aspects of the construct (i.e., executive

itself (i.e., BRIEF items) adequately captures all aspects of the construct (i.e., executive functioning) it purports to measure. The fact that items were selected from clinical interviews and that there was strong agreement among pediatric neuropsychologists that items fit within their intended scales, serves to strengthen content validity for the BRIEF. In addition, during test development, scales were refined with item-total correlations (i.e., the extent to which an individual item correlated

were refined with item-total correlations (i.e., the extent to which an individual item correlated with the overall score for its scale). Inter-rater agreement among expert reviewers served as an external check for scale membership of each item. Construct validity speaks to the degree to which the measure adequately captures the construct that it aims to address. It can be quantified by evaluating convergence with other measures that target the same construct, as well as divergence with measures

convergence with other measures that target the same construct, as well as divergence with measures targeting dissociable constructs. Evidence for good construct validity is found in high correlations between BRIEF scales and other pertinent measures, including the ADD-IV scale (Zhang et al. 2005), and several subscales of the Child Behavior Checklist (CBCL) (Achenbach 1991). Specifically, all scales were highly correlated with the ADD-IV summary scores, which is expected given that executive

were highly correlated with the ADD-IV summary scores, which is expected given that executive functioning problems are prominent in children with diagnosed attention and behavioral disorders. In addition, there is some evidence for specificity and dissociability of individual BRIEF scales with regard to the constructs they aim to capture. For example, the BRIEF Initiate scale correlated with the Withdrawn, Anxious/Depressed, and Attention Problems scales of the CBCL, whereas the BRIEF Working

Withdrawn, Anxious/Depressed, and Attention Problems scales of the CBCL, whereas the BRIEF Working Memory scale correlated only with CBCL Attention Problems scale. The BRIEF Initiate scale correlated with both the CBCL Attention Problems and Aggressive Behavior scales, whereas the BRIEF Shift and Emotional Control scales correlated with the CBCL Aggressive Behavior scale alone. Evidence of divergence with constructs unrelated to executive functioning is evident in low correlation rates between

with constructs unrelated to executive functioning is evident in low correlation rates between BRIEF scales and the CBCL Somatization scale. Convergent and divergent construct validity was also evaluated by comparing the BRIEF, the Behavior Assessment System for Children (BASC) (Reynolds 2004), and the Conners’ Parent Rating Scale.

Clinical Uses Findings pertaining to the application of the BRIEF with children and adolescents diagnosed with ASD are available in the BRIEF manual. As part of measure development, the BRIEF was administered to parents (n = 26) and teachers (n = 18) of children with high-functioning ASD, as well as to parents (n = 18) and teachers (n = 16) of typically developing children with no psychiatric diagnoses. Relative to controls, scores for children with high-functioning ASD, including Autistic

diagnoses. Relative to controls, scores for children with high-functioning ASD, including Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder – Not Otherwise Specified – were significantly elevated across all BRIEF scales and composite indices.

Similar to findings detailed in the BRIEF manual, primary research literature also confirms that the BRIEF is sensitive to differences between children with ASD and those with no psychiatric diagnoses. Thus, researchers have reported that when comparing BRIEF scores of high-functioning children with ASD to the standardization sample in the BRIEF manual, BRI, MI, and GEC composite scores were all clinically elevated on average (Gilotty et al. 2002; Kenworthy et al. 2005; Kenworthy et al. 2009;

clinically elevated on average (Gilotty et al. 2002; Kenworthy et al. 2005; Kenworthy et al. 2009; Winsler et al. 2007). More specifically, compared to BRIEF norms, approximately two-thirds of children with ASD scored in the clinically impaired range (i.e., T scores over 65) on the BRI, MI, and GEC (Kenworthy et al. 2005). There is also some evidence that when boys with ASD are compared to those with typical development, the pattern of generalized score elevations is most salient for the Shift

with typical development, the pattern of generalized score elevations is most salient for the Shift scale (Mackinlay et al. 2006).

Research conducted within ASD samples has revealed a link between executive functioning symptom elevations on the BRIEF and greater severity in core symptoms associated with the disorder. Namely, higher scores on the BRI were related to greater impairment in Communication, Reciprocal Social Interaction, and Restricted and Repetitive Behavior domains as assessed by the most widely used diagnostic measures for autism (i.e., Autism Diagnostic Observation Schedule, Autism Diagnostic Interview –

measures for autism (i.e., Autism Diagnostic Observation Schedule, Autism Diagnostic Interview – Revised) (Kenworthy et al. 2009). Likewise higher BRI scores were associated with score elevations on a measure specifically targeting repetitive behaviors (Boyd et al. 2009). Increased MI scores, in contrast, were related to greater social symptom severity only (Kenworthy et al. 2009). However, when BRIEF scores were compared to scores on a measure of adaptive functioning, MI scores were

when BRIEF scores were compared to scores on a measure of adaptive functioning, MI scores were significantly correlated with impairment in both the socialization and communication domains (Gilotty et al. 2002).

The clinical utility of the BRIEF for children with ASD has been examined in comparison to other clinical populations. Specifically, researchers have shown that individuals with ASD can be differentiated from others with psychiatric, learning, behavioral, and learning disorders based on their BRIEF profiles. For example, children with ASD have more elevated scores on the BRIEF than do those with reading disabilities or traumatic brain injury (Gioia et al. 2002). Some research has demonstrated

reading disabilities or traumatic brain injury (Gioia et al. 2002). Some research has demonstrated similarities between the BRIEF profiles of children with ASD and those with attention-deficit/hyperactivity disorder (ADHD) (Gioia et al. 2002; Winsler et al. 2007). However, deficits in flexibility, as indexed by the Shift scale of the BRIEF, appear to be most characteristic of children with ASD (Gioia et al. 2002).

Taken together, research to date has demonstrated that the BRIEF is sensitive to behavioral impairments in regulatory and metacognitive functioning in children with ASD. The level of impairment and relation between BRIEF scores and adaptive functioning in this group underscore the importance of evaluating executive functioning when assessing and treating children with ASD. The BRIEF offers a unique tool for assessing this domain of behavior, as observed by adults familiar with children’s

a unique tool for assessing this domain of behavior, as observed by adults familiar with children’s day-to-day functioning in real-world settings.

The Brief Infant-Toddler Social and Emotional Assessment (BITSEA) (Briggs-Gowan and Carter 2006) is a 42-item caregiver-report broadband screening tool developed to identify social-emotional and behavior problems and delays in the acquisition of competencies in children 11–48-months of age. The BITSEA was derived from the longer (166 item) Infant-Toddler Social and Emotional Assessment (ITSEA; Carter and Briggs-Gowan 2000; Carter et al. 2003), which provides an in-depth analysis of emerging

Carter and Briggs-Gowan 2000; Carter et al. 2003), which provides an in-depth analysis of emerging social-emotional development and intervention guidance. The BITSEA can be completed by caregiver report in approximately 5–7 minutes and is written at a fourth to sixth grade reading level (Briggs-Gowan et al. 2004). Items are rated on a three-point Likert scale, with the following anchors: not true/rarely (0), somewhat true/sometimes (1), and very true/often (2). The information gathered from the

(0), somewhat true/sometimes (1), and very true/often (2). The information gathered from the BITSEA covers a broad range of social-emotional and behavioral functioning and generates scores in internalizing, externalizing, and regulatory domains, as well as other areas that may be indicative of emerging psychopathology. Following the original scoring of the BITSEA, items are grouped into Problem and Competence domains that generate possible problem and possible delay/deviance cut-scores as well

Competence domains that generate possible problem and possible delay/deviance cut-scores as well as percentiles based on national norms.

Of the total 42 items, the BITSEA contains 19 specific items that are consistent with early-emerging autism spectrum disorder (ASD) symptomatology (See Table 1). An important feature of the BITSEA is its inclusion of both positively and negatively worded items, relating to both problem behaviors and delayed competencies associated with ASD; thus the BITSEA ASD items make up two ASD-specific subscales: ASD-Problems and ASD-Competence. The ASD-Competence subscale consists of nine items that assess

ASD-Problems and ASD-Competence. The ASD-Competence subscale consists of nine items that assess early social-emotional and social-communication competencies expected in typical development. The ASD-Problems subscale consists of ten individual items that assess social-communication impairments and repetitive and restricted behaviors commonly seen in young children with ASD. The ASD-Problems and ASD-Competence subscales are calculated and prorated if fewer than three items are missing from either

subscales are calculated and prorated if fewer than three items are missing from either scale. BITSEA ASD subscales can be scored individually or together, as an ASD-Total score; however, findings presented by Giserman Kiss et al. (2017) demonstrate that the ASD-Competence subscale is the most statistically and clinically effective of all three subscales (see the Psychometric Data section for more information). Children with subscale scores exceeding ASD-Competence, ASD-Problem, or ASD-Total

information). Children with subscale scores exceeding ASD-Competence, ASD-Problem, or ASD-Total cutoffs are considered “at risk” for ASD, and further developmental assessment is strongly recommended. The BITSEA allows clinicians to efficiently identify young children who are showing early symptoms of ASD, while simultaneously screening for early-emerging non-ASD social-emotional and behavior problems. Simultaneous screening may allow for more efficient assessments in fast-paced pediatric and

Simultaneous screening may allow for more efficient assessments in fast-paced pediatric and early education settings and eliminate providers’ discomfort regarding intro-ducing an ASD-specific screener to families who have not raised any concerns about their children’s social-emotional development, ultimately leading to increased universal screening.

| Subscale | Psychometric properties | Behaviors assesseda | |---|---|---| | ASD-Problems | Sensitivity: 76% Specificity: 72% PPV: 68% | Limited enjoyment of playful activities Unresponsive when hurt Tactile sensitivities Difficulty with transitions Repetitive play Repetitive speech Repetitive motor movements Appears unaware of surroundings Limited eye contact Avoidant of physical contact |

| ASD-Competence | Sensitivity: 91% Specificity: 80% PPV: 77% | Shares successes Seeks out caregiver when upset Responds to name with eye contact Emotional/physical affection Interactive play Empathy when someone is hurt Imitation skills Use of pointing to share interests/joint attention Pretend play |

Historical Background The BITSEA was originally developed in response to the recognition of the importance of early detection of and early intervention services for young children with social-emotional and behavioral deficits. While the ITSEA responded to this need and effectively identified children with early-emerging psychopathology, authors recognized the limitations of this tool, particularly regarding the time required for completion and scoring. With the recommendation for routine

regarding the time required for completion and scoring. With the recommendation for routine screening during well-child visits by the American Academy of Pediatrics (AAP 2001), as well as the introduction of managed care which resulted in shorter pediatric office visits, a more efficient questionnaire, the BITSEA, was derived from the pool of ITSEA questions. Original and replication studies of the full BITSEA demonstrated excellent test-retest reliability and good interrater agreement between

full BITSEA demonstrated excellent test-retest reliability and good interrater agreement between parents when used in a socioeconomically and ethnically diverse community-based population (Briggs-Gowan et al. 2004; Kruzinga et al. 2012). Subsequent studies found strong prediction of concurrent psychiatric disorders (Briggs-Gowan et al. 2013) and good prediction to parent- and teacher-reported school-aged psychopathology (Briggs-Gowan and Carter 2008). In the original BITSEA manual, the authors

psychopathology (Briggs-Gowan and Carter 2008). In the original BITSEA manual, the authors recommended that the BITSEA be used for identifying young children with ASD, based on an at risk score on the overall competence scale as well as inspection of the scores for a subset of these ASD-consistent items. The ASD item pool was expanded to included sensory over- and under-responsivity following the publication of the DSM-5 criteria (APA 2013). However, cut-scores for the ASD items were not

the publication of the DSM-5 criteria (APA 2013). However, cut-scores for the ASD items were not published.

The increased recognition of the benefits of early intervention services for children diagnosed with ASD (e.g., Pickles et al. 2016; Seida et al. 2009; Woods and Wetherby 2003), updated recommendations of the AAP and Centers for Disease Control for frequent developmental surveillance and screening (AAP 2006; Baio 2012), and common use of the BITSEA across research and clinical settings to identify toddlers at risk for ASD lead Giserman Kiss et al. (2017) to assess the feasibility of the BITSEA

toddlers at risk for ASD lead Giserman Kiss et al. (2017) to assess the feasibility of the BITSEA ASD subscales. The measure was tested in a sample that included young children with ASD, non-ASD psychopathology, and typical development. Findings optimized cut-scores for each subscale that evidenced moderate to high discriminative power for detecting children with ASD. Of the three subscales, the ASD-Competence scale proved to be the most statistically and clinically effective (see the

the ASD-Competence scale proved to be the most statistically and clinically effective (see the Psychometric Data section for more information).

Psychometric Data Giserman Kiss et al. (2017) used receiver-operating characteristic (ROC) plots to deter-mine optimal cut-scores on the BITSEA ASD subscales in a diverse sample of 512 young chil-dren (223 in the ASD group, and 289 in the non-ASD group) ranging in age from 15 to 48 months. Children in the non-ASD group included those with typical development as well as non-ASD early-emerging psychopathology. With regard to the ASD-Problems subscale, analyses using the optimized cut-score

psychopathology. With regard to the ASD-Problems subscale, analyses using the optimized cut-score revealed moderate subscale accuracy (AUC = 0.81), 76% sensitivity, 72% specificity, and 68% positive predictive value (PPV). The ASD-Competence subscale optimized cut-score yielded stronger psychometric properties, as analyses evidenced high subscale accuracy (AUC = 0.92), 91% sensitivity, 80% specificity, and 77% PPV. Finally, the ASD-Total subscale optimized cut-score also yielded high subscale

and 77% PPV. Finally, the ASD-Total subscale optimized cut-score also yielded high subscale accuracy (AUC = 0.92), as well as 80% sensitivity, 79% specificity, and 77% PPV. Sensitivity and specificity rates for all three subscale optimized cut-scores in the subsample of children 24 months old and younger were comparable or stronger to rates in the overall sample. Importantly, the ASD-Competence subscale outperformed the other subscales in identifying both true positives and true negatives.

Post-hoc analyses explored the clinical characteristics of the children who screened positive despite not receiving an ASD diagnosis. Analyses revealed that children who screened as false positives on the ASD-Competence scale (i.e., screened positive but did not have ASD) had significantly lower nonverbal problem-solving, receptive language, and expressive lan-guage abilities than children that screened as true negatives (i.e., screened negative and did not have ASD). In addition, children who

as true negatives (i.e., screened negative and did not have ASD). In addition, children who screened as false negatives (i.e., screened negative but had ASD) had significantly higher receptive language scores than true positives (i.e., screened positive and had ASD).

Clinical Uses It is recommended that the ASD-Competence subscale be used in pediatric primary care, early intervention, and early education settings to detect children at risk for ASD, while simultaneously assessing other areas of a child’s development. The ASD-Competence subscale demonstrated strong psychometric properties and is quick and easy for providers to score. While the ASD-Total subscale also demonstrated high sensitivity, specificity, and PPV, scoring this subscale can be more

subscale also demonstrated high sensitivity, specificity, and PPV, scoring this subscale can be more cumbersome, error-prone, and time-consuming due to the additional items and need to perform calculations. Thus, providers are strongly encouraged to use the ASD-Competence subscale in order to examine a child’s risk status for ASD, while simultaneously using the overall BITSEA to assess other social-emotional and behavioral domains, thus fulfilling the AAP and CDC’s recommendations for regular

and behavioral domains, thus fulfilling the AAP and CDC’s recommendations for regular developmental surveillance and screening. If a child’s score on the ASD-Competence subscale exceeds the designated cut-score, caregivers should be counseled to seek further assessment of ASD symptoms, either through a second-stage observational screener, more in-depth conversation about the child’s functioning across settings and relationships, or a developmental evaluation.

The broadband nature of the BITSEA may reduce the previously documented stress felt by caregivers during the ASD screening and diagnostic process (Siklos and Kerns 2007). A global screener that has a specific ASD subscale may give the provider additional time and avenues by which to introduce the idea of ASD. Moreover, the use of positively as well as negatively worded questions on the BITSEA may be more acceptable to parents. Finally, given the increased risk for specific forms of

BITSEA may be more acceptable to parents. Finally, given the increased risk for specific forms of psychopathology among children with ASD (e.g., anxiety, sleeping, and feeding disorders) (Ming et al. 2008), gathering information about symptoms beyond ASD may inform comprehensive intervention services, when needed.

Several limitations of the BITSEA ASD subscales should be kept in mind during use. Giserman Kiss et al. (2017) reported that the ASD-Competence subscale is possibly limited by its overlap with symptoms of general intellectual or developmental disabilities or other early-emerging psychopathology and also may be compromised by advanced language abilities. Thus, like any screening tool, the BITSEA should be used as an initial assessment and not as a diagnostic tool.

Description The Brief Observation of Social Communication Change (BOSCC; Grzadzinski et al. 2016) is a treatment response measure of autism spectrum disorder (ASD) symptoms. The BOSCC is a behavioral coding scheme that is applied to 10–12 min videotaped social/play interactions between a child and a researcher or caregiver (play partner). The coding scheme was developed by expanding items from the Autism Diagnostic Observation Schedule, second Edition (ADOS-2; Lord et al. 2012), to quantify

the Autism Diagnostic Observation Schedule, second Edition (ADOS-2; Lord et al. 2012), to quantify more nuanced variation in ASD symptoms. The BOSCC has been shown to be sensitive to changes in ASD symptoms from pre- to post-treatment (Divan et al. 2018; Frost et al. 2019; Gengoux et al. 2019; Grzadzinski et al. 2016; Kim et al. 2019; Kitzerow et al. 2015; Pijl et al. 2016), was designed to be flexible to use across sites/studies and coded by trained coders who were relatively naïve to ASD. As a

to use across sites/studies and coded by trained coders who were relatively naïve to ASD. As a measure of global ASD symptom change, studies show the BOSCC is most effective at quantifying treatment response in intervention tri-als examining improvements across a range of ASD symptoms. A module of the BOSCC for minimally verbal (those using single words or less) toddlers or preschoolers is currently available to researchers with an applicable research study. Development of BOSCC modules for

available to researchers with an applicable research study. Development of BOSCC modules for individuals with phrase to fluent speech are under development. Both the BOSCC play partner and coder can be unaware of the child’s treatment status and time point, eliminating any potential bias associated with knowledge of the intervention.

Historical Background Advances in developing efficacious interventions are limited by a lack of treatment response measures, without which researchers are hindered in evaluating intervention programs (French and Kennedy 2018). Many early interventions focus on improving core ASD symptoms (See Need for Caregiver Support for Families of Children with ASD, The, and “Intervention During the Prodromal Stages of ASD”). Often subtle in nature, quantifying changes in core ASD symp-toms is difficult

Stages of ASD”). Often subtle in nature, quantifying changes in core ASD symp-toms is difficult (Anagnostou et al. 2015). Intervention programs have used the ADOS-2 to capture changes in ASD symptoms (Dawson et al. 2010; Estes et al. 2015) with limited suc-cess – perhaps since the ADOS-2 was developed to provide a diagnosis rather than measure changes in symptoms. There are additional limita-tions to using the ADOS-2 as well. Reliable use of the ADOS-2 requires substantial training and expertise

to using the ADOS-2 as well. Reliable use of the ADOS-2 requires substantial training and expertise of ASD, as well as substantial clinician and participant time (~45–60 min), limiting its use across sites and studies. As well as the ADOS-2, studies have used measures developed specifically for their intervention, impeding comparabil-ity across studies, or have focused on parent reports of improvement that, while important, may yield subjective information since parents are often aware of the

that, while important, may yield subjective information since parents are often aware of the child’s treatment status (Bolte and Diehl 2013; Guastella et al. 2015). To address such limitations, the BOSCC was devel-oped by expanding ADOS-2 items to increase sensitivity compared to a diagnostic coding scheme. The BOSCC administration is also shorter, and the coding can be completed by less experienced individuals who are unaware of the child’s treatment status and time point.

Psychometric Data The initial psychometric properties of the BOSCC were evaluated in a sample of 56 chil-dren participating in early intervention trials (Grzadzinski et al. 2016). Results of this and subsequent work indicate that the BOSCC has high inter-rater (intra-class correlation coeffi-cients; ICCs = 0.88–0.98) and test-retest (ICCs = 0.79–0.90) reliabilities (Grzadzinski et al. 2016; Kim et al. 2019). These reliabilities have been further confirmed in independent sam-ples (Frost et al.

et al. 2019). These reliabilities have been further confirmed in independent sam-ples (Frost et al. 2019; Kitzerow et al. 2015; Pijl et al. 2016). Results also showed statistically significant decreases (improvements) in BOSCC scores, with small to moderate effect sizes (effect sizes = 0.37–0.60), over 6 to 8 months of intervention (Grzadzinski et al. 2016; Kim et al. 2019; Mullen 1995; Sparrow et al. 2005). These improvements aligned with improvements observed in parent reports and standardized

al. 2005). These improvements aligned with improvements observed in parent reports and standardized assessments of communication skills (Grzadzinski et al. 2016; Kim et al. 2019). Independent studies have also shown significant decreases in BOSCC scores over the course of intervention (Divan et al. 2018; Frost et al. 2019; Gengoux et al. 2019; Grzadzinski et al. 2016; Kim et al. 2019; Kitzerow et al. 2015; Pijl et al. 2016). However, not all intervention trials using the BOSCC have shown

et al. 2015; Pijl et al. 2016). However, not all intervention trials using the BOSCC have shown significant improvements. The amount of change observed may be depen-dent on characteristics of the intervention, such as intensity or duration (Fletcher-Watson et al. 2016; Nordahl-Hansen et al. 2016). See Grzadzinski and Lord, 2019 for a review of the BOSCC development.

Clinical Uses The BOSCC is a treatment response measure that quantifies changes in ASD symptoms over the course of an intervention (See Need for Caregiver Support for Families of Children with ASD, The, and “Intervention During the Prodromal Stages of ASD”). The BOSCC is not currently available for clinical use though can be obtained for use by researchers with an applicable research study and who have completed appropriate training. The BOSCC is appropriate for mini-mally verbal (single words

have completed appropriate training. The BOSCC is appropriate for mini-mally verbal (single words or less) toddler/preschoolers with ASD, and modules are cur-rently under development for individuals with phrase to fluent speech. The BOSCC is not intended for use as an ASD screener (See “Screening for ASD and Developmental Delays in Infants and Toddlers”), diagnosis, or severity metric. The BOSCC’s ability to capture treatment response in other clinical conditions that may have over-lapping

ability to capture treatment response in other clinical conditions that may have over-lapping symptoms with ASD (e.g., fragile X) remains an area of exploration.

Broader Autism Phenotype Jeremy Parr1,2 and Ann S. Le-Couteur3 1Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK 2Sir James Spence Institute, Institute of Health and Society, Newcastle University, Royal Victoria Infirmary, Newcastle upon Tyne, UK
3Institute of Health and Society, Sir James Spence Institute, Newcastle University, Royal Victoria Infirmary, Newcastle upon Tyne, UK

Definition Autism spectrum disorder (ASD) twin and family studies showed during the 1990s that the behavioral phenotype extends beyond the clinical diagnoses of autism and ASD to include related milder behaviors or personality traits in the relatives of affected individuals. These qualitatively similar ASD-related behaviors in relatives are termed the broader autism phenotype (BAP) (see Losh et al. 2011, for a review). Although several authors have reported that these symptoms and traits are

al. 2011, for a review). Although several authors have reported that these symptoms and traits are continuously distributed in the general population, the term “BAP” has not been used to describe individuals with social communication difficulties from population samples (see Constantino 2011, for a review of this literature). Researchers have defined BAP characteristics using interview and questionnaire methods, neuropsychological and neurophysiological testing, and neuroimaging (Bailey and Parr

methods, neuropsychological and neurophysiological testing, and neuroimaging (Bailey and Parr 2003; Dawson et al. 2002; Losh et al. 2011). However, there is no formal definition of the BAP due to variability in approaches and research findings (see section “Historical Background”); indeed BAP is not a “diagnosis” recognized in the international diagnostic classification systems. Thus, the best working definition of the BAP would be “individuals with the BAP show behavioral characteristics and

working definition of the BAP would be “individuals with the BAP show behavioral characteristics and personality traits similar to, but milder than, their relative with ASD” (see Current Knowledge).

Historical Background Over the last 20 years, many groups have used a variety of instruments to define various character-istics in relatives of people with ASD. A large body of literature describes the different compo-nents of the BAP proposed following studies using a range of methodologies and measures in different populations (see Bailey et al. 1998, and Losh et al. 2011, for reviews). Research shows that in keeping with ASD, impaired social communication and social emotional abilities are

shows that in keeping with ASD, impaired social communication and social emotional abilities are core features of the BAP, together with repetitive behaviors (including obsessional behaviors) and behavioral rigidity (for reviews, see Parr et al. 2011 and Losh et al. 2011). Of all the BAP traits, repetitive behaviors, rigidity, perfectionism, obsessions, and circumscribed/special interests have been the most difficult to identify and quantify.

Two approaches have been taken to the inves-tigation of these ASD-like behavioral traits. First, researchers have focused on identifying the BAP in families of one child with ASD (singleton fam-ilies) and two or more people with ASD (multiplex families). Various groups have contin-ued this research as part of the search for autism susceptibility genes (see the work of Piven, Daw-son, and Parr et al. and the International Molecular Genetic Study of Autism Consortium [IMGSAC]). In addition to

et al. and the International Molecular Genetic Study of Autism Consortium [IMGSAC]). In addition to investigating the behavioral BAP within ASD families, researchers have focused on identifying neuropsychological components of the BAP in the relatives of people with ASD (Dawson et al. 2002). More recently, neurophysiological measurement and neuroimag-ing studies of relatives have been a focus (see Losh et al. 2011); the rationale for using all these approaches to BAP characterization is

(see Losh et al. 2011); the rationale for using all these approaches to BAP characterization is described by Bailey and Parr (2003). By contrast to this investigation of the relatives of people with ASD, other groups have conceptualized and mea-sured a range of social communication and other difficulties in the context of normative trait varia-tion in the general population hypothesizing that these traits could be included on a dimension with ASD (see Constantino 2011, for a review). The BAP has

traits could be included on a dimension with ASD (see Constantino 2011, for a review). The BAP has been of increasing interest to researchers due to its potential importance for understanding the neurobiological nature of ASD (for a review, see Lainhart and Lange 2011). From 2000, research groups began collecting data from relatives in an attempt to assist in the search for ASD susceptibility genes, assuming that the BAP indexes a “genetic risk” that may be present in one or both parents and

assuming that the BAP indexes a “genetic risk” that may be present in one or both parents and “unaffected” siblings – thus relatives might carry ASD susceptibility genes and express an “ASD-like” phenotype (see Bailey and Parr 2003, and Losh et al. 2011). The most commonly used measures for the identification of BAP in affected families are sum-marized in Table 1. In keeping with ASD itself, reliable direct observation of BAP behaviors has been challenging. For this reason, most research groups

direct observation of BAP behaviors has been challenging. For this reason, most research groups have used some form of interview data, either exclusively or in combination with other measures. For most ASD molecular genetic stud-ies, the BAP measures have been designed to dimensionalize the social communication difficul-ties of parents and children (e.g., quantitative trait loci studies) rather than to define an affected/unaf-fected categorical “cut-off score” – this means “the BAP” is less

than to define an affected/unaf-fected categorical “cut-off score” – this means “the BAP” is less clearly defined than might be expected.

Current Knowledge Research studies have shown that relatives of people with ASD have difficulties qualitatively similar to those seen in ASD, but milder – the individual’s profile of difficulties does not meet clinical ASD threshold. Generally, males are more commonly and more severely affected than females, and relatives from multiplex families are more affected than those from singleton fam-ilies. Children and young people may have difficulties with developing and maintaining friendships and

Children and young people may have difficulties with developing and maintaining friendships and problems relating to others. Children frequently have less well-developed social play than their same-age peers. Children and adults may be considered aloof. Language and communication difficulties are common. Perfectionism, obsessions, and rigidity may be seen. Considering mental health, the BAP has been associated with affective disorder (particularly depression). Whether depression is part of the

associated with affective disorder (particularly depression). Whether depression is part of the BAP or is a function of having a relative with ASD remains unknown (for a detailed review, see Losh et al. 2011).

| Instrument | Interview/ questionnaire/ observation | Populations used | References |
|---|---|---|---| | Social responsiveness scale | Questionnaire | Twin, singleton, multiplex, and general pop samples | Constantino and Todd (2003) |
| BAPQ | Questionnaire | Singleton and multiplex families | Hurley et al. (2007) |
| BPASS | Interview and observation | Singleton and multiplex families | Dawson et al. (2007) |

| BPASS | Interview and observation | Singleton and multiplex families | Dawson et al. (2007) |
| Family history interview and impression of interviewee | Interview and observation | Singleton and multiplex families | Parr et al. and the IMGSAC, in preparation |

Investigation of the familial mechanisms that underpin ASD continue and, indeed, the finding that parents from multiplex and simplex ASD families show the BAP at different rates is likely to be important for our understanding of etiology. However, to date, the BAP has contributed only modestly to the understanding of the neurobiology of ASD or the identification of genetic vari-ants (see Lainhart and Lange 2011 and Parr et al. 2011). The impact of the BAP on the functioning of affected children,

Lange 2011 and Parr et al. 2011). The impact of the BAP on the functioning of affected children, young people, and adults is similar to that seen in ASD itself, but milder, and usually results in less impairment in daily life. However, BAP traits may lead to difficulties with peer interactions and marital relationships and thus potentially difficulties at home, school, and in the workplace. People with BAP have varying degrees of insight into their difficulties and the impact of their behavior for

BAP have varying degrees of insight into their difficulties and the impact of their behavior for themselves and others (Losh et al. 2011; Parr et al. 2011).

“BAP” is a term used in research and not usually in clinical practice. However, in clinical settings, with their knowledge of the importance of genetic factors in autism, relatives of people with ASD comment about their own ASD-related difficulties, or those of other family members. For clinicians, the challenge is how best to “classify” these difficulties shown by people who do not have ASD but who do experience some degree of social communication impairment. It is impor-tant to be able to

who do experience some degree of social communication impairment. It is impor-tant to be able to effectively describe these difficulties for the affected individual themselves, families, and professionals; this leads to a better understanding of the person’s behaviors and the reason for them. This is likely to be particularly important for individuals who may benefit from specific intervention and resources, for example, mentoring in the workplace for adults with BAP and support from education

resources, for example, mentoring in the workplace for adults with BAP and support from education and/or social care professionals for affected children, young people, and adults (see Parr et al. 2011; Parr and Le Couteur 2011). Finally, relatively little is known about the neurobiology or pathophysiology of the BAP. It has been hoped that better understanding the BAP will lead to improved neurobiological knowledge about ASD itself. However, in keeping with ASD, replicated neurobiological

knowledge about ASD itself. However, in keeping with ASD, replicated neurobiological findings are scarce (comprehensively recently reviewed by Lainhart and Lange 2011). Whether BAP will play a significant role in advancing our understanding of the complexity of ASD remains to be seen (Parr et al. 2011).

Future Directions During the next decade, studies of parents and other relatives of people with ASD will continue, and this will undoubtedly expand the understand-ing of subclinical ASD traits. Genetics research is likely to continue to be a major “driver” of increased knowledge about BAP, for example, there will be great interest in the extent to which the BAP is seen in the relatives of people with ASD who have an identified inherited or de novo causal variant as this will further inform our

with ASD who have an identified inherited or de novo causal variant as this will further inform our knowledge of the genetic and environmental con-tributions to ASD.

Another exciting prospect will be the findings from studies of siblings of children with ASD (“at-risk” or “high-risk” sibling studies). These studies will provide insights into the develop-mental trajectories of children with ASD and those without ASD who have the BAP; both groups can be compared to siblings who develop typically and to controls. In the future, as “high-risk” siblings move toward and into adolescence and adulthood, the knowledge of how early development and subsequent

toward and into adolescence and adulthood, the knowledge of how early development and subsequent characteristics relate to individual progress and outcomes will improve.

Finally, one new direction for BAP research relates to intervention. There is currently great interest in whether intervention changes the developmental trajectories and outcomes for “at-risk” siblings (e.g., the study of Green and colleagues in the UK). Projects evaluating the effect of the BAP on the delivery of parent-mediated early intervention for ASD have commenced. If research findings show that the BAP has a negative impact on the effectiveness of parents’ interactions with their child

that the BAP has a negative impact on the effectiveness of parents’ interactions with their child with ASD, identifying the most beneficial intervention strat-egies for BAP-affected parents will become both a research and a clinical priority to ensure better understanding and effective targeting of evidence-based interventions. For older children and adults with the BAP, interventions and treatments need to be evaluated. Researchers are, for example, beginning to investigate whether behavioral

need to be evaluated. Researchers are, for example, beginning to investigate whether behavioral interventions such as social skills training or social stories might improve the social skills of people with BAP. Indeed, it could be argued that people with BAP might be more responsive to such interventions than individuals with a clinical diagnosis of ASD as they are less likely to have cognitive impair-ment, will have milder social impairment, and may well have more insight into their

impair-ment, will have milder social impairment, and may well have more insight into their difficulties. Workplace interventions for people with BAP may also be of benefit – whether mentoring or other types of workplace support give adults a greater chance of working more productively with colleagues still remains to be seen.

See Also Autism Perfectionism Repetitive Behavior Social Communication   Short Description or Definition Broca’s aphasia is a language disorder that is characterized by limited, “telegraphic” spoken language output in the face of intact language comprehension skills. This condition is typically the result of damage to the left frontal lobe of the brain, often due to stroke, but may also result from traumatic brain injury or a degenerative neurological condition.

Categorization Broca’s aphasia is considered a “nonfluent” apha-sia under larger aphasia classification systems due to the patient’s lack of fluent speech output.
 Epidemiology Estimates of Broca’s aphasia in the larger popula-tion are largely unknown, though it has been estimated that 80,000 people develop aphasia in the United States each year.

Natural History, Prognostic Factors, and Outcomes The prognosis for individuals who are diagnosed with Broca’s aphasia is largely dependent upon the severity of the condition. Often, people with Broca’s aphasia do not completely recover fluent spoken language skills and need to develop compensatory strategies to manage the condition. It is thought that recovery is enhanced depending upon factors such as age of onset, health, education level, and how soon treatment takes place after brain damage

as age of onset, health, education level, and how soon treatment takes place after brain damage has occurred.

Clinical Expression and Pathophysiology Broca’s aphasia is often due to damage in the left frontal lobe of the brain, also referred to as “Broca’s area.” Patients demonstrate impaired, effortful speech/language output in the face of relatively intact comprehension skills.

Evaluation and Differential Diagnosis Please see “Aphasia.”  Treatment Treatment for Broca’s aphasia, as in other aphasias, is typically individualized and is based on the patient’s profile of strengths and needs. Formal speech-language therapy is often recommended to address functional communication in a variety of settings in which patients are expected to communicate. Therapy goals are focused on maximiz-ing the individual’s ability to communicate effectively with peers and family members,

on maximiz-ing the individual’s ability to communicate effectively with peers and family members, given residual strengths. For individuals with Broca’s aphasia, treatment strategies often focus on language output and naming as well as build-ing sentence length, building on their intact comprehension skills. In addition, computer-assisted methods are beginning to show promise in assisting individuals with Broca’s aphasia to transmit messages.

Family member and patient support groups are often a critical piece of the therapeutic process as the patient and family learn to manage the patient’s changed mode of communication. Support groups are often key to recovery.

Please see “Aphasia” for a list of general treatment strategies for aphasia.  Brodmann’s Areas Kartik Pattabiraman Child Study Center, Yale School of Medicine, New Haven, CT, USA Department of Psychiatry, Yale School of Medicine, New Haven, CT, USA  Definition Brodmann’s areas (BA) are regions of the cerebral cortex defined by the layer-specific organi-zation of cells. These areas were originally annotated by German neurologist Korbinian Brodmann using basic staining techniques and microscopy in

by German neurologist Korbinian Brodmann using basic staining techniques and microscopy in 1909. He initially divided the human cortex into 43 distinct areas. Later studies confirmed these boundaries and identified the functional significance of each area. For exam-ple, BA 44 and 45 are part of the left frontal cortex and are important for the motor aspect of speech. Several BAs have been implicated in autism including BA9 (dorsolateral prefrontal cortex), BA 24 (right anterior cingulate gyrus),

in autism including BA9 (dorsolateral prefrontal cortex), BA 24 (right anterior cingulate gyrus), and BA44 (left inferior frontal gyrus).

See Also Cerebral Cortex Neuroanatomy    Description The BOT-2 is designed to assess motor proficiency in children and adults from ages 4 to 21 years and 11 months. This was intended to cover the age range for children served by the American Individuals with Disabilities Education Act (IDEA). It is individually administered, stan-dardized, and norm referenced. It is used for treatment planning and evaluation in clinical and school settings as well as for research. Physical and occupational

and evaluation in clinical and school settings as well as for research. Physical and occupational therapists especially may find the test useful.

The Complete Form version of the BOT-2 includes 53 items based on activities such as cut-ting out a circle, copying a square, bouncing a ball, and standing on one leg. Items are organized into eight subtests and further categorized into four motor area composites and one comprehen-sive score. These composites are strength and agility (running speed and agility + strength sub-tests, meant to measure control of the musculature of body involved in movement); manual coordi-nation (manual dexterity

control of the musculature of body involved in movement); manual coordi-nation (manual dexterity and upper limb coordi-nation subtests, meant to measure the ability to manually manipulate objects and the level of coordination in the hands and arms); body coor-dination (bilateral coordination and balance sub-tests, to measure large musculature control of posture, balance, as well as the sequential and simultaneous coordination of the lower and upper limbs); and fine manual control (fine motor

and simultaneous coordination of the lower and upper limbs); and fine manual control (fine motor precision and fine motor integration sub-tests, to measure the level of control and coordi-nation of the hand and fingers by looking at an individual’s ability to grasp, draw, and cut with scissors). The nature of the measure makes it fairly easy to administer, as children tend to enjoy performing the variety of activities involved in the testing. The BOT-2 revision has made it much more adaptive for

of activities involved in the testing. The BOT-2 revision has made it much more adaptive for younger children, for instance by increasing the number of blocks to string and adding the balance beam to walk on. The entire battery of tests can take an hour to administer, but a 14-item Short Form of the test is available which only requires 20 min. The short form accounts for 96.3% of the variability in children ages 3–5, so it can be used as a substitute for the complete battery when appropriate.

in children ages 3–5, so it can be used as a substitute for the complete battery when appropriate. The test manual provides many clear pictures of the tasks being completed. However, scoring of the test is time-intensive, taking at least 20 min according to Deitz et al. (2007). Deitz et al. note that scoring for the BOT-2, although improved over the BOTMP, nonetheless is tedious, some-times confusing, and easy to make errors. Norm lookup tables are also difficult to use.

Historical Background The BOTMP was originally developed in Russia by Oseretsky in 1923 (Oseretsky 1923). When it was translated into English by Doll in 1946 (Doll 1946), it was known as the “Oseretsky Test of Motor Proficiency.” However, because the test had been based on Oseretsky’s personal obser-vations of children, it had many problems relat-ing to its psychometric properties. Multiple revisions were made in order to increase the reliability and validity of the measure, and the BOTMP

revisions were made in order to increase the reliability and validity of the measure, and the BOTMP represents the culmination of these revisions. The BOT-2 was published in 2005 with updated and revised materials, items, scales, and norms.

Psychometric Data Criticisms of the original BOTMP included con-cerns about the normative sample being racially homogenous and functioning at normal levels both intellectually and motorically. A child’s abil-ity to understand and respond to instructions may have confounded motor skill development. Factor analyses showed that 14 of the 17 fine motor ability items loaded at significant levels on the general motor ability factor, implying that the BOTMP was not a good stand-alone measure for

on the general motor ability factor, implying that the BOTMP was not a good stand-alone measure for assessing fine motor abilities and that the group-ing of tests into fine and gross motor skills was problematic. The creators of the BOT-2 revision set out to address these and other issues.

The normative sample for the BOT-2 included 1520 individuals from ages 4 to 21, with greater age differentiation for normative comparisons in younger children (in 1-year increments) up to a 5-year age increment for the adult sample. It was targeted to US Census Data from 2001 and included about 11% of children with special edu-cation status. Separate clinical samples were tested for autism/Asperger’s, developmental coor-dination disorder, and mild-to-moderate mental retardation. Interrater

developmental coor-dination disorder, and mild-to-moderate mental retardation. Interrater reliability reported by the developers of the BOT-2 is above .90 for all but the fine motor scale (adjuster r = .86). Test-retest reliability is good for the Total Composite and the Short Form totals, but generally less good (with sub-stantial variability) for the other scale composites and item analyses. Deitz et al. (2007) therefore recommend that the Composite scores be used wherever possible and that

et al. (2007) therefore recommend that the Composite scores be used wherever possible and that reliance on subscale scores is inadvisable.

Test developers utilized Confirmatory Factor Analysis to document a good fit for the four-factor model of the BOT-2, better than the two-factor (Fine vs. Gross Motor) structure of the original BOTMP. The three clinical samples all scored significantly lower than the normative sample on both the Complete and Short forms. Convergent validity was strong for the original BOTMP (adjusted r = .80 for composite scores); the Pea-body Test of Developmental Motor Skills – Sec-ond Edition (adjusted rs

composite scores); the Pea-body Test of Developmental Motor Skills – Sec-ond Edition (adjusted rs ranging from .51 to .75 for subscales); and the Test of Visual Motor Skills – Revised (comparison of relevant fine motor skills adjusted r = .74). Statistical modeling by Wuang et al. (2009) on a sample of 446 children diagnosed with intellec-tual disability found that the manual coordination and strength + agility composites fit the whole sample better than the fine motor and body coor-dination

strength + agility composites fit the whole sample better than the fine motor and body coor-dination composites, which fit the lower-functioning end of the sample better than the higher-functioning end. Their analysis suggested elimination and/or restructuring of a number of items and scales to improve both reliability and discriminant validity.

Clinical Uses Deitz et al. (2007) note that the inclusion of 11% special education students in the normative sam-ple makes the BOT-2 less likely than its BOTMP predecessor to score children with motor disabil-ities as significantly below average.

The BOTMP has been used to characterize motor problems in individuals diagnosed with Autism Spectrum Disorders. One study (Ghaziuddin and Butler 1998) compared BOTMP motor coordination between children diagnosed with autism, Asperger’s syndrome (AS), and perva-sive developmental disorder not otherwise specified (PDDNOS). Of the three groups, those with autism were the most clumsy, followed by those with AS and then those with PDDNOS. However, there was not a significant difference between the

with AS and then those with PDDNOS. However, there was not a significant difference between the autism group and the AS group. These results indicate that caution should be used before including clum-siness as a diagnostic criterion for only one of the disorders. Dewey et al. (2007), using the BOTMP Short Form, found particular impairment in gestural performance in ASD relative to other clinical groups (developmental motor coordination and ADHD). In the context of generally impaired motor

groups (developmental motor coordination and ADHD). In the context of generally impaired motor performance for all the clinical groups, Dewey et al. suggest that gestural impairments in autism are not solely attributable to motor problems.

The test is also frequently used in studies of developmental coordination disorders, with a few studies of ADHD. There are very few published studies that have used the BOT-2 instead of the original BOTMP.

Bruxism Arianne Stevens and Raphael Bernier Psychiatry and Behavioral Sciences, University of Washington, Seattle, WA, USA  Synonyms Sleep bruxism  Definition Bruxism is the nonfunctional and involuntary grinding, gnashing, clenching, or tapping of teeth. Bruxism is considered to be common among individuals with developmental delays or disabilities, including those diagnosed with autism spectrum disorders. Bruxism is classified as nocturnal (occurring during sleep) or diurnal (occurring while

disorders. Bruxism is classified as nocturnal (occurring during sleep) or diurnal (occurring while awake). Bruxism can be audible when teeth are grinding or gnashing or inaudible when teeth are clenching. Many are not aware of their bruxism, but some will develop symptoms such as tooth sensitivity, headaches, or jaw pain. Bruxism is considered to be a psychophysiological and sleep disorder influenced by anatomical and biological (i.e., dental abnormalities), neuro-logical (i.e., mental

influenced by anatomical and biological (i.e., dental abnormalities), neuro-logical (i.e., mental retardation), and/or psycho-logical (i.e., stress, trauma, anxiety) factors. Studies examining effective treatments for brux-ism in individuals with developmental disabilities are limited to date; however, dental-based approaches, biofeedback, behavior therapy, habit reversal, and stress management appear to be common interventions.

Definition In General The issue in this case was whether the prevailing party in a claim for violating the Americans with Disabilities Act (ADA) should be awarded attor-ney’s fees under the catalyst theory. The Supreme Court, quoting Black’s Law Dictionary 1145 (7th ed. 1999), defines “prevailing party” as “[a] party in whose favor a judgment is ren-dered, regardless of the amount of damages awarded (in certain cases, the court will award attorney’s fees to the prevailing party).” The catalyst

(in certain cases, the court will award attorney’s fees to the prevailing party).” The catalyst theory provides fees to a party where the case serves as a “catalyst” for legislative change. The Supreme Court ruled that the “cat-alyst theory” is not an appropriate basis for attorney’s fees under certain civil rights cases, including under the ADA. The prevailing party is only entitled to attorney’s fees when they are victorious in court and awarded a judgment in court.

Implications for ASD Students Buckhannon has implications for those with ASD. First, in the case of discrimination under the ADA, parents may be less willing to bring cases because of the expense of bringing a lawsuit. The parent would not be guaranteed expensive attorney fees if they end up pre-vailing outside of a courtroom. Only cases heard in court would be awarded attorney’s fees. Second, IDEA (Individuals with Disabil-ities Education Act) has made fees available to parents who win in

IDEA (Individuals with Disabil-ities Education Act) has made fees available to parents who win in either administrative or judicial proceedings. If IDEA follows the Buckhannon decision, then this fee payment for parents would become obsolete if a case is heard in an informal proceeding or dismissed because of a change in law.

Litigation Strategies Buckhannon specifically dealt with an assisted living facility which failed a fire inspection. Buckhannon was ordered to be shut down, but filed suit under the ADA. After filing suit, the state legislature removed the language that cre-ated the problem. But, because of the Supreme Court decision, Buckhannon was not entitled to an award of attorney’s fees. Most special educa-tion cases settle either because of the speed nec-essary to allow the child to continue his/her

cases settle either because of the speed nec-essary to allow the child to continue his/her education or the school district changes its behavior before a decision is even made. Under Buckhannon, parents would not be able to recover attorney fees. It might be more appropri-ate to try to mediate between the parents and school district, so that in the mediation agree-ment the parents can be entitled to some reason-able attorney’s fees.

Short Description or Definition Bullying is an aggressive behavior perpetrated by those who hold and/or try to maintain a dominant position over others (Morita 1985). It is intended to cause mental and/or physical harm or suffering to another: it is a repetitive behavior and almost always involves an imbalance of power between victim and perpetrator in which the victim is usu-ally not able to defend himself/herself (Farrington 1993). Bullying is also the most common form of school violence.

Bullying can take various forms including: exclusion, verbal abuse, physical abuse, and/or coercion (Kim et al. 2004). Bullying may be “direct” or “indirect.” Direct bullying includes physical and verbal aggression, such as kicking, threatening, name-calling, and insulting. Indi-rect or covert/relational bullying includes social exclusion/isolation, such as ignoring, cliques, rumor-mongering, insulting, and humiliating with the spread of embarrassing information about an individual (van der Wal

and humiliating with the spread of embarrassing information about an individual (van der Wal et al. 2003). Students are involved in bullying as victims, perpetrators, victim-perpetrators, or bystanders. Victims may experience many forms of bullying with considerable variability in form. Some stu-dents may be involved in bullying as both a victim and perpetrator; that is, they are bullied by one student or a group of students and may also individually or in a group bully other students (Schwartz

or a group of students and may also individually or in a group bully other students (Schwartz 2000). With recent advances in information technol-ogy, bullying has added cyberspace to the schoolyard and neighborhood as sites for bully-ing. In cyberspace, bullying can take place anon-ymously, without overtly identifying the perpetrators. Further, children or adolescents may not be safe from bullying even in their homes since unkind text messages, hateful e-mails, videos, or provocatively

bullying even in their homes since unkind text messages, hateful e-mails, videos, or provocatively manipulated messages and materials can reach them 24 h per day, 7 days a week (Pridgen 2009).

Epidemiology/Clinical Expression Children and adolescents with Autism Spectrum Disorder (ASD) have essential difficulty in recip-rocal social interaction along with impairment in communication skills (American Psychiatric Association [APA] 1994; Caronna et al. 2008; Frith and Hill 2004; Gura et al. 2011; Kelly et al. 2008; van Roekel et al. 2010). These difficulties make those with ASD especially vulnerable for involvement with bullying as victims and/or per-petrators since bullying is a form of

for involvement with bullying as victims and/or per-petrators since bullying is a form of dynamic and complex social interactions (Cappadocia et al. 2011; Sharp and Cowie 1994). Children with ASD also often demonstrate stereotyped behavior and a limited range of interests, often in unusual topics or objects that can make them stand out as quite different from their peers: this often puts them in the position of becoming targets for ridi-cule (Cappadocia et al. 2011; Gray 2004). Other challenges

position of becoming targets for ridi-cule (Cappadocia et al. 2011; Gray 2004). Other challenges often facing children with ASD that include unusual sensory responses such as hyper/hyposensitivity to auditory, olfactory, tactile, or visual stimuli; problems in motor coordination; and poor performance in physical education, can also contribute to the risk of becoming a target of the peer victimization (Bejerot et al. 2011; Kelly et al. 2008).

Perpetrators of bullying intend to cause mental and/or physical harm or suffering on other chil-dren; perpetrators identify what would cause pain to their victims and, then, plan and execute their actions accordingly. However, it is difficult for children and adolescents with ASD to bully others due to their difficulties in understanding and using the rules governing social behaviors and perspec-tives of other people. Nevertheless, their behav-iors may be regarded as bullying for several reasons.

of other people. Nevertheless, their behav-iors may be regarded as bullying for several reasons. First, children and adolescents with ASD may have increased levels of aggressive behaviors (Mandell et al. 2005; van Roekel et al. 2010). Since bullying is a form of aggression, those with ASD who have increased level of aggression may be considered to be bullying other children or adolescents (van Roekel et al.). Second, because adolescents with ASD have lim-ited insight into social processes

Roekel et al.). Second, because adolescents with ASD have lim-ited insight into social processes (Frith and Hill 2004; van Roekel et al. 2010), they may not be aware of the consequences of their own behavior or words; some of these behaviors may be regarded as bullying (van Roekel et al.). For example, children with ASD may say brutally honest things or violate the physical space of others to the extent that they cause discomfort, even though it may not be intended to be bullying (Montes and

extent that they cause discomfort, even though it may not be intended to be bullying (Montes and Halterman 2007; van Roekel et al. 2010).

Although the severity of ASD symptoms is negatively correlated with successful social inclu-sion and peer relationships, even children and adolescents with high-functioning ASD continue to struggle with social competence as they age (Brauminger and Kasari 2000; Cappadocia et al. 2011; Orsmond et al. 2004); as a result, even with improvement in overall functioning, individuals with ASD remain at increased risks for bullying experiences (Cappadocia et al. 2011).

Indeed, several previous studies have reported that children or adolescents with ASD showed increased involvement in bullying as victims or perpetrators (Cappadocia et al. 2011; Little 2001, 2002; Twyman et al. 2010; van Roekel et al. 2010). Little used a website survey of 411 parents of children with Asperger’s disorder (AD) (75% of subjects) or nonverbal learning disorder (25%); they reported that up to 75% of the children with AD were bullied within previous year. The youn-ger children,

that up to 75% of the children with AD were bullied within previous year. The youn-ger children, boys, and children with ASD had greater risk for victimization (Little 2001). In another study of 187 adolescents with ASD attending a special secondary education school, van Roekel et al. also reported that 7–30% were victimized more than once a month, and 19–46% bullied others, depending on the informants (teacher, peer, or self-report of bullying) (van Roekel et al. 2010). Samson et al. showed

(teacher, peer, or self-report of bullying) (van Roekel et al. 2010). Samson et al. showed indi-viduals with Autistic Disorder recruited from clinics in Germany and Switzerland (40 with autism and 83 control), who reported higher rates of experiencing teasing or being ridiculed, compared to the control group who did not have ASD diagnoses (Samson and Huber 2010). Inter-estingly, Shtayermann measured the bullying experiences of 10 adolescents or young adults with Asperger’s Disorder using mailed

the bullying experiences of 10 adolescents or young adults with Asperger’s Disorder using mailed or online self- or parent’s questionnaires, and reported a negative correlation between the severity of AD symptoms and victimization. The authors consid-ered that children and adolescents with milder AD symptoms received lesser support and supervision from teachers and/or parents than those with severe symptom, leading to greater risks for vic-timization due to “under-surveillance” by adults

severe symptom, leading to greater risks for vic-timization due to “under-surveillance” by adults (Shtayermman 2007). Although there are signifi-cant limitations in his study, including the small number of samples and survey accuracy, this find-ing suggests that children and adolescents with ASD, irrespective of symptom severity, require appropriate support from caregivers and teachers in order to prevent peer victimization. Addi-tionally, Volker et al., using a standardized behavioral rating

to prevent peer victimization. Addi-tionally, Volker et al., using a standardized behavioral rating scale, demonstrated that children and ado-lescent with high-functioning ASD recruited from those awaiting participating in social intervention study (N = 62) showed increased scores for bul-lying participation when compared to a control group, even after being controlled for their IQs (Volker et al. 2010).

When examining the experience of school bul-lying in children and adolescents with ASD, the school setting likely plays an important role: there are advantages and shortcomings in different school settings for children and adolescents with ASD (Burack et al. 1997; Laugeson et al. 2009). On one hand, regular classroom has been associ-ated with increases in the complexity of interac-tions and decreases in nonsocial activity, in comparison to special education settings. On the other hand, these

in nonsocial activity, in comparison to special education settings. On the other hand, these individuals report often feeling lonelier and having poorer quality friendships then their typically developing classmates (Capps et al. 1996; Laugeson et al. 2009; Sigman and Ruskin 1999). Another study also implies important feature that in a special educational setting, teachers report higher rates of bullying among students with ASD than those without (van Roekel et al. 2010).

In general, bullying is associated with various psychological problems as consequences or ante-cedents to bullying experiences (Barker et al. 2008; Kim et al. 2005, 2006; Salmon et al. 1998; Srabstein and Piazza 2008); children and adoles-cents with ASD who are also involved with bul-lying are not exceptions. In a study of 192 children diagnosed with ASD recruited from the website for parents of children with ASD or the school system, using parental report of psy-chopathology, Cappadocia et al.

with ASD or the school system, using parental report of psy-chopathology, Cappadocia et al. reported that ASD children who were bullied once or more per week had higher levels of anxiety; hyperac-tivity; self-injurious, stereotypic behaviors; and oversensitivity when compared to those not bul-lied or bullied less than once per week (Cappadocia et al. 2011). Additionally, correla-tions between peer victimization and suicidal ide-ation were reported in adolescents with AD (Asperger’s Disorder)

victimization and suicidal ide-ation were reported in adolescents with AD (Asperger’s Disorder) (Shtayermman 2007). Kelly et al. reported that peer victimization was not only directly related to severity of ASD symp-toms, but also that poor peer relationship was associated with anxiety and depression symptoms measured by parental survey in 322 children with ASD recruited from the clinics. This suggests that not only do ASD symptoms increased risks for peer victimization but also that

This suggests that not only do ASD symptoms increased risks for peer victimization but also that victimization may worsen associated symptoms in children with ASD (Kelly et al. 2008). Such bidirectional impacts of social problems and peer victimization on each other have been already demonstrated in a general population of adolescents in a longitudi-nal study (Kim et al. 2006).

In addition to ASD severity, cognitive function may play roles in the risks for the involvement in bullying and development of psychopathological consequences from bullying experiences. For example, children with milder forms of ASD or higher cognitive function may be more accurate in recognizing bullying when they are bullied while those with more severe ASD or lower levels of cognitive function might not; this may lead to more serious adverse consequences from bullying experiences in the

might not; this may lead to more serious adverse consequences from bullying experiences in the higher functioning groups (Sofronoff et al. 2011). The experience of bullying in childhood and adolescence can have long-term sequelae, includ-ing in adulthood. Samson et al. recruited 40 adults diagnosed with ASD and 83 adults without ASD to compare their recollection of bullying experi-ence in their childhood and/or youth; compared to the control group, the individuals with Asperger’s Disorder

childhood and/or youth; compared to the control group, the individuals with Asperger’s Disorder report not only higher rates of recollec-tions of being ridiculed or teased in their child-hood or youth, but also fear for being ridiculed at present, indicating that the psychological damage of school bullying persists beyond the school years (Samson and Huber 2010).

Evaluation and Differential Diagnosis Given the high prevalence of bullying and its association with psychiatric and psychological morbidities in children and adolescents with ASD, comprehensive and careful attention and assessment is required for prevention, early identification, and intervention with bullying in ASD children and adolescents.

Due to their impairments in making and recog-nizing social interactions, the utility of self-report as a tool for identifying bullying experiences in the ASD population may be limited. Indeed, van Roekel et al. showed that teachers reported higher prevalence of bullying compared to peer- and self-reports which indicated much lower rates of school bullying in this population: teachers reported 27% of adolescents frequently involved in school bullying (more than once a week), whereas adolescents

of adolescents frequently involved in school bullying (more than once a week), whereas adolescents themselves reporting only 12% in 230 adolescents with ASD (van Roekel et al. 2010). This was distinctly different from the findings in children and adolescents without ASD, when on average self-report or peer nomination measurement report 35–48% of involvement in bullying as victims and/or perpetrators, but teacher or parent report only have 10–18% (Cleary 2000; Hunter et al. 2004; Ladd and

but teacher or parent report only have 10–18% (Cleary 2000; Hunter et al. 2004; Ladd and Kochenderfer-Ladd 2002; Nansel et al. 2001; Rønning et al. 2009). Such a discrepancy may stem from the combination of two factors: First, teachers may have missed opportunities to witness bullying incidences among typically developing children since bullying usually occur in the absence of adults supervision; children and adolescents with ASD receive higher levels of supervision and monitoring from

children and adolescents with ASD receive higher levels of supervision and monitoring from teachers, resulting in more opportunities for teachers to observe peer interac-tions and bullying in this population. Second, indi-viduals with ASD have difficulties understanding the mental states of other people, and consequently in understanding the intentions of others (Frith and Hill 2004; van Roekel et al. 2010). It may be difficult for children and adolescents with ASD to recognize or identify

et al. 2010). It may be difficult for children and adolescents with ASD to recognize or identify bullying incidents due to their limited social insights, unlike typically developing children (van Roekel et al.). Therefore, comprehensive assessment with multiple informants including caregivers, teachers, and peers in addition to self-report is crucial for the identification of bullying experience in children and adolescents with ASD (Ladd and Kochenderfer-Ladd 2002; Mandell et al. 2005).

Treatment Screening for bullying experience and symptoms for ASD in primary care and community setting is an important first step for early identification and intervention since children and adolescents with ASD are at increased risks for the involvement of bullying (Gura et al. 2011; Tantam and Girgis 2009).

Careful school placement is crucial for chil-dren and adolescents with ASD. Regular educa-tion classroom placement has resulted in mixed outcomes for individuals with ASD (Burack et al. 1997; Laugeson et al. 2009). As mentioned ear-lier, mainstream classroom placement is associ-ated with the increase of the complexity of interac-tions and decrease in nonsocial activity, in comparison to special education settings. On the other hand, placement in special education classroom can enhance teachers’

settings. On the other hand, placement in special education classroom can enhance teachers’ capacities for careful attention and intervention for those students with ASD and protection from undesirable social stigma and traumatization (Laugeson et al.). Hav-ing close friends in a classroom is protective of becoming a target of bullying (Cappadocia et al. 2011; Nansel et al. 2001; Williams and Guerra 2007). Therefore, interventions such as social skill training to help these children have better

2007). Therefore, interventions such as social skill training to help these children have better friendship will decrease their risks for peer vic-timization (Laugeson et al. 2009).

Children and adolescents with ASD have var-ious comorbid psychopathologies including depression, anxiety, and withdrawal, which are reported to be associated with increased risks for the involvement of bullying in general population (Volker et al. 2010). Appropriate assessment and interventions for comorbid conditions in ASD children is warranted (Volker et al.). When a child is being bullied, particularly a child with a disability, adult support is crucial. Through scaffolding, adults can

particularly a child with a disability, adult support is crucial. Through scaffolding, adults can support children to acquire and develop important social skills such as: adaptive emotional and behavioral regulation strategies and coping skills, identifying and engaging with supportive peers, problem solving, and communicating assertively (Cappadocia et al. 2011; Cummings et al. 2006). Recent research supports the effectiveness and importance of parent-assisted learning with respect to

research supports the effectiveness and importance of parent-assisted learning with respect to develop-ing social skills among children with ASD (Cappadocia et al. 2011; Frankel et al. 2010; Laugeson et al. 2009). This relationship scaffold-ing, individualized for each child to capitalize on his or her strengths and support weaknesses, can help the child develop coping skills that may reduce the impact of the bullying on the victim-ized child and in turn reduce the likelihood of bullying. It is

of the bullying on the victim-ized child and in turn reduce the likelihood of bullying. It is important to encourage children to seek help from a trusted adult and continue to seek help until they find an adult who is willing to listen and offer protection and support. Once the adult understands the particulars of the bullying epi-sodes (e.g., when and where), safe places and safe people can be discussed to minimize the risk for bullying to occur (Cappadocia et al. 2011; Cummings et al. 2006).

to minimize the risk for bullying to occur (Cappadocia et al. 2011; Cummings et al. 2006). Finally, validated effective antibullying cam-paigns/interventions to decrease bullying in

home, schools, and communities will exert preventive effect on bullying not only for children with ASD but for all children receiving such interventions (Olweus 1994; Olweus and Limber 2010; Vreeman and Carroll 2007). Understanding the relationships between ASD and bullying has been limited due to the shortcomings of previous studies, including small sample size, limited sampling methods, and/or inadequate measurement of bullying (Mandell et al. 2005). Future study should focus on

and/or inadequate measurement of bullying (Mandell et al. 2005). Future study should focus on incidence/prevalence of bullying, the impact of bullying experiences on the natural course of ASD, associations between bullying experiences and other comorbid psychopathology, and development and assessment of intervention programs in larger population-based samples of children and adolescents with ASD.

Bullying is common among all children, but the children with ASD are at even greater risk of this harmful experience. And, just as is the case for typically developing children, reduction of bullying enhances developmental prospects for all children, including those with ASD. While ASD may not be preventable at this time, we can reduce or even prevent bullying experiences for children with ASD, as we can and must for all children.

Buspirone is an antianxiety medication that is an agonist for serotonin 1A receptor. Unlike benzodiazepines, buspirone does not directly affect a GABA system and is not habit-forming. There is limited information on the use of buspirone in children and only one trial in adolescents with pervasive developmental disorders. In that study, buspirone appeared to be only modestly beneficial for disruptive and agitated behavior.

Description The California Verbal Learning Test-Children’s Version (CVLT-C; Delis et al. 1994) is an examination of auditory and verbal learning for children between the ages of 5 years and 16 years 11 months. The test makes use of familiar visual categories to generate a measure of short- and long-term memory performance. Encoding and recall are examined via the use of single words verbally presented in the context of “a shopping list” over the course of eight total trials spanning 15–20 min

in the context of “a shopping list” over the course of eight total trials spanning 15–20 min with an additional 20-min period to accommodate delayed recall testing. During the first five trials of CVLT-C, a list of 15 items consisting of three semantic categories (fruit, clothing, and toys), labeled “list A” or “the Monday list,” is read aloud to the child and he or she is asked to recall as many items as possible following each presentation. During the sixth trial, a second 15-item list

many items as possible following each presentation. During the sixth trial, a second 15-item list containing new words that belong to one of the categories from the original list (fruits) as well as words from two new categories with semantic similarities (furniture and sweets) from the original list are presented as “list B” or “the Tuesday list” to the child as an interference task. The child is then asked to recall as many words as possible. After completion of the list B trial, the child is

then asked to recall as many words as possible. After completion of the list B trial, the child is then asked to recall words from list A without presentation of the items. In the seventh trial, list categories are used as cues to elicit recall from the original list via prompts from the examiner such as “Tell me all the things to wear in the Monday list.” Following trial 7 is a 20-min break from the task during which time the child can complete nonverbal tasks or participate in other

from the task during which time the child can complete nonverbal tasks or participate in other activities that provide moderate distraction. Following this “long-delay” interval, the child is asked to recall as many words as he or she can from list A (long-delay free-recall trial), asked to recall words from list A after being provided with the categorical cues (long-delay cued-recall trial), and finally read a 45-item list aloud and asked to indicate whether or not each word was on list A

and finally read a 45-item list aloud and asked to indicate whether or not each word was on list A (yes/no recognition trial). Responses are recorded and documented by the examiner during every trial.

A complete administration of the CVLT-C produces data on eight recall measures, eight learning characteristics, four areas of recall errors, four recognition measures, and five contrast measures. This includes information concerning encoding strategies for success over time as well as the characteristics of errors that occur. In addition to generating information on the quantity of items accurately recalled after each of the eight testing trials, the CVLT-C allows for the detailed examination

recalled after each of the eight testing trials, the CVLT-C allows for the detailed examination of characteristics related to acquisition methods utilized during the learning process. Characteristics related to the learning process are examined through the use of learning strategy variables and contrast variables. The learning strategy variables aid in outlining the characteristics of acquisition and encoding that progress throughout the course of the examination. They include semantic

and encoding that progress throughout the course of the examination. They include semantic clustering (i.e., consecutive words from the same category), serial clustering (i.e., words recalled in the same order in which they were presented), primacy recall (i.e., percentage of words recalled from the first five items of the list), middle recall (i.e., percentage of words recalled from the middle five items of the list), recency recall (i.e., percentage of words recalled from the last five items of

items of the list), recency recall (i.e., percentage of words recalled from the last five items of the list), learning slope (i.e., the average number of new words recalled per learning trial), consistency (i.e., percentage of words recalled once that were also recalled on the following trial), recognition hits (i.e., number of words correctly identified as belonging to list A during the recognition trial), and discriminability (i.e., accuracy of distinguishing target words in list A from

trial), and discriminability (i.e., accuracy of distinguishing target words in list A from distraction words in list B). Characteristics of errors are also calculated with regard to perseveration (i.e., words repeated in a trial), free intrusions (i.e., extra-list intrusions on all free-recall trials), cued intrusions (i.e., extra-list intrusions on the cued-recall trials), total intrusions (i.e., extra-list intrusions on all trials), false-positives (i.e., words incorrectly identified as list A

extra-list intrusions on all trials), false-positives (i.e., words incorrectly identified as list A items during the recognition trials), and response bias (i.e., the tendency to identify words as belonging on the target list during recognition trials). The learning slope variable, in particular, allows for a thorough examination of specific learning characteristics that may be evident across differing presentations of clinical populations. Deficits in areas related to learning (i.e., flat learning

presentations of clinical populations. Deficits in areas related to learning (i.e., flat learning slope across trials with low amounts of new words learned), encoding (e.g., poor trial 1 performance followed by a normative learning slope), or sustaining focus (i.e., normative recall on initial trials with poor recall on later trials) can be identified with the learning slope, allowing for the closer inspection of learning characteristics and discrimination of other possible domains of learning

inspection of learning characteristics and discrimination of other possible domains of learning that may be affected (Spreen and Strauss 1998). Children with Down syndrome, attention deficit hyperactivity disorder (ADHD), and other disorders have demonstrated distinct and differentiated characteristics of learning slope in clinical populations (Delis et al. 1994). The CVLT-C contrast variables (Donders 1999) aid in the identification of trial discrepancies and learning differences that occur

(Donders 1999) aid in the identification of trial discrepancies and learning differences that occur throughout the learning process. These include aspects of encoding related to proactive interference (i.e., the contrast between list B recall and list A trial 1 recall), retroactive interference (i.e., the contrast between list A short-delay free recall and list A trial 5), rapid forgetting (i.e., contrast between list A long-delay free recall and list A short-delay recall), and retrieval

(i.e., contrast between list A long-delay free recall and list A short-delay recall), and retrieval problems (i.e., contrast between discrimination trial and list A long-delay free recall).

Historical Background Delis et al. (2000) observed that while there are a variety of verbal learning instruments that measure the amount of material that is recalled, far fewer examine the processes by which the information is learned and retrieved. Construction of CVLT-C in 1994 followed the same process-oriented approach of the original California Verbal Learning Test (CVLT) for adults (Delis et al. 1987). For construction of the task, selection of the target words themselves was chosen

et al. 1987). For construction of the task, selection of the target words themselves was chosen based on their frequency of occurrence in the English language as well as the frequency of reported words by children in the sample. The three most common words in each semantic category were removed to avoid recall confounds associated with item familiarity (Miller et al. 2003). The context of a shopping list was selected for its consistent familiarity with children across a wide range of cultural

list was selected for its consistent familiarity with children across a wide range of cultural and demographic variables and mapped closely with the CVLT with regard to presentation, timing, and scoring.

Psychometric Data The normative sample for the CVLT-C consists of stratified data taken from the 1988 US census findings and is comprised of 920 children in 12 age ranges from 5 years to 16 years 11 months. Standardized scores were derived from accumulative raw score performance per age group, distribution normalization, and elimination of outliers and skewing effects. The remaining learning score components of the CVLT-C were developed via regression analyses (Delis et al. 1987). Investigations

components of the CVLT-C were developed via regression analyses (Delis et al. 1987). Investigations of test-retest reliability among 106 school-age children ranged from .17 (cued-recall intrusions, for 12-year-olds) to.90 (perseverations, for 8-year-olds) (Delis et al. 1987, 1994; Spreen and Strauss 1998). Alternate forms reliability was reported at .84 (Delis et al. 1987, 1994; Spreen and Strauss 1998), indicating appropriate reliability for multiple administrations with children and tracking

1998), indicating appropriate reliability for multiple administrations with children and tracking results and learning characteristics over time. Gender effects were reported by the authors to be minimal in the initial standardization sample, and significant differences were not found for gender in the 4-year-old sample norms provided by Goodman, Delis, and Mattson (Goodman et al. 1999) for normative populations. However, differences in gender have been reported in followup examinations of the

populations. However, differences in gender have been reported in followup examinations of the standardization sample (Kramer et al. 1997) and have been evidenced in clinical populations of children with ADHD (Cutting et al. 2003) and significant head injury (Warschausky et al. 2005). Gender effects were also evident in examinations of adolescent populations, with girls outperforming boys (Beebe et al. 2000). Low correlations with measures of executive functioning and moderate associations with

al. 2000). Low correlations with measures of executive functioning and moderate associations with intelligence measures such as the Wechsler block design and vocabulary subtests have been reported (Beebe et al. 2000). Donders (1999) also identified a significant link between parental education levels and test performance in the standardized sample, with children of parents with higher education consisting of 22% of the highest performing children and children of parents with lower rates of

consisting of 22% of the highest performing children and children of parents with lower rates of education accounting for 30% of the children in the below-average range of performance.

Predictably, age effects were observed among the standardization sample, with steeper learning slopes being present in children as age increased and development progressed. Consistency of recalled items and immediate recall scores were also observed to have developmental trends across the sample. The use of semantic clustering strategy as a learning strategy was first emergent among 9–12-year-old participants. Adolescents in the sample exhibited higher degrees of serial clustering strategy use

participants. Adolescents in the sample exhibited higher degrees of serial clustering strategy use compared to other age groups (Delis et al. 1994). Investigations of executive functioning and CVLT-C process scores further indicate that perseverative errors evidence strong consistency throughout development with minimal improvement, while rates of intrusions and false-positives exhibit considerable improvement as development progresses into adolescence (Beebe et al. 2002; Delis et al. 1994).

improvement as development progresses into adolescence (Beebe et al. 2002; Delis et al. 1994). Donders (1999) provided maximum likelihood confirmatory factor analysis on 13 qualitative and quantitative variables from the original standardized sample to identify the most salient factors of learning and memory tapped by the CVLT-C. A five-factor model consisting of attention span, learning efficiency, free delayed recall, cued delayed recall, and inaccurate recall showed the greatest fit and was

free delayed recall, cued delayed recall, and inaccurate recall showed the greatest fit and was proposed to be a valid and clinically useful predictor of performance on the measure. The CVLT-C has been co-normed with the children’s category test (CCT; Boll 1993), allowing examiners to compare a child’s memory and learning performance with other forms of higher order cognitive functioning. Combining the results of both tasks to generate the learning profile of a child can be clinically valuable as

the results of both tasks to generate the learning profile of a child can be clinically valuable as the CCT provides explicit feedback on a nonverbal task, while the CVLT-C provides non-explicit feedback on a verbal task through repetition. By taking advantage of the co-normed scores, clinicians are able to tap a wider range of learning areas and skills for characterizing the cognitive capabilities of the child. Donders (1999) examined the psychometric comparisons of the two measures including

of the child. Donders (1999) examined the psychometric comparisons of the two measures including the magnitude of difference necessary for statistical significance in scores. Standardized sample data from both measures were used to evaluate covariances and statistically significant discrepancies between the T scores of those instruments as well as the base rate of specific discrepancies among 920 children ranging in age from 5 to 16 years. Results suggested that the CCT and CVLT-C share a small

children ranging in age from 5 to 16 years. Results suggested that the CCT and CVLT-C share a small degree of common variance. Statistically significant score discrepancies between the two measures (T-score difference greater than 18 among 5–8-year-olds and greater than 16 among 9–16-year-olds) were common, indicating that evaluation of the potential clinical significance of a discrepancy between the obtained results should also include consideration of base rate statistics when evaluating

the obtained results should also include consideration of base rate statistics when evaluating individual children.

While the standardization sample focused on children ages 5 years through 16 years 11 months, Goodman et al. (1999) provided normative data for 4-year-old participants on the CVLT-C for potential administration with younger populations to aid in early identification and intervention. Each month of the 4-year-old range was represented among the stratified sample of 80 (40 males and 40 females). Performance characteristics of the younger population were considerably similar to that of the

Performance characteristics of the younger population were considerably similar to that of the normative sample data, apart from a few learning characteristics. The 4-year-old participants had a tendency for higher extra-list intrusions relative to their correct responses on cued recall that were not present on free recall as well as a higher endorsement of distracter items during the recognition trial. Semantic and serial clustering characteristics were also consistent with developmental

trial. Semantic and serial clustering characteristics were also consistent with developmental trends, providing evidence for utility in identifying early memory and learning characteristics with the younger population.

Clinical Uses The CVLT-C has been used to assess memory and learning in a wide variety of clinical childhood populations and has been used to examine verbal learning in children with ASD. Early studies of memory and list learning among children with ASD highlighted specific deficits in recall compared to control groups. Boucher and Warrington (1976) used memory tests that employed pictures, lists, and spoken words with 29 children with ASD and compared recall scores against age-matched controls.

and spoken words with 29 children with ASD and compared recall scores against age-matched controls. During trials of forced-choice recall, children with autism showed significantly lower rates of recall than controls but demonstrated considerable improvement when provided with semantic descriptive cues of list items and pictures. Initial investigations of verbal recall among children with autism spectrum disorder (ASD) utilizing the CVLT also suggested distinct differences in learning and memory

disorder (ASD) utilizing the CVLT also suggested distinct differences in learning and memory profiles when compared to typically developing peers. Minshew and Goldstein (1993) compared the performance of high-functioning children and adults with ASD ranging in age from 12 to 40 years old to age-matched normal controls using the CVLT. The comparison group significantly outperformed the ASD group. Specific scores indicated that while individuals with ASD showed comparable recall and recognition

Specific scores indicated that while individuals with ASD showed comparable recall and recognition scores when presented with list A of CVLT, they showed significantly more intrusion errors on both list A and list B items and considerably lower recall scores on list B. The authors concluded that the overall characteristics of the ASD scores were indicative of a “subtle inefficiency of verbal memory” that was more suggestive of deficits in mechanisms for effectively organizing information than a

that was more suggestive of deficits in mechanisms for effectively organizing information than a reflection of comprehensive memory impairment. More recent investigations into learning strategies and encoding profiles of children with ASD lend support for this theory and suggest that the CVLT-C may be effective in highlighting specific characteristics of verbal learning in children with ASD that differ from those of typical developing peers. Phelan, Filliter, and Johnson (Phelan et al. 2010)

differ from those of typical developing peers. Phelan, Filliter, and Johnson (Phelan et al. 2010) compared performance and verbal learning characteristics on the CVLT-C between 15 high-functioning children with ASD and typical developing controls. Although the learning profiles and performance characteristics of both groups were comparable, children with ASD demonstrated considerable improvement in their cued-recall scores compared to their free-recall scores, suggesting the need for external

in their cued-recall scores compared to their free-recall scores, suggesting the need for external supports and cueing opportunities to facilitate verbal memory performance among ASD youth.

Key clinical strengths of the CVLT-C include its relative ease of use and excellent internal consistency. Considerable research and psychometric data have been gathered with CVLT-C, and it has proven useful in predicting a variety of difficulties and deficits that can inform decision making concerning placements in groups such as head trauma patients and other neurodevelopmental disorders (Nagel et al. 2006; Nichols et al. 2004). As previously noted, the test provides a considerable amount of

et al. 2006; Nichols et al. 2004). As previously noted, the test provides a considerable amount of information about the verbal learning process and learning strategies across a relatively short period of time in such a way that recall and cueing effects can be examined efficiently and reliably. Scores on the CVLT-C have been shown to account for a considerable amount of the variance in the prediction of special education services and long-term educational outcome among children with severe head

of special education services and long-term educational outcome among children with severe head injury that could translate to other clinical populations (Miller and Donders 2003). The CVLT-C’s implementation across a wide range of childhood populations illustrates its breadth in utility and efficiency across several domains of care. The provision of normative data for 4-year-olds additionally provides valuable opportunities for early screening, intervention, and tracking among children early in

valuable opportunities for early screening, intervention, and tracking among children early in development. While the internal consistency of the test has been thoroughly investigated and validated, stability coefficients of many of the variables examined in the CVLT-C fall below acceptable standards, cautioning against the use of single variables as valid examination of cognitive factors (Spreen and Strauss 1998). Overall, the test has shown to be an efficient and informative instrument of

and Strauss 1998). Overall, the test has shown to be an efficient and informative instrument of memory and verbal learning among children that serves as a valuable asset to clinicians involved in diagnostic assessment, treatment planning, service enrollment, and needs assessment.

The CANTAB® tests are simple, computerised, non-linguistic, and culturally blind. They can be administered by a trained assistant. Importantly, interpretation of a patient’s condition can be easily understood by a clinician. Below is a complete list of all tests, correct at time of publication. The tests are categorised as assessing the following cognitive domains:

1. Induction 2. Visual Memory 3. Executive function 4. Attention 5. Verbal/Semantic Memory 6. Decision Making and Response Control 7. Social Cognition 8. Other tests  CANTAB – Induction These very short tests can be used to familiarize participants with the general idea of responding in a task by touching the screen. They can also be regarded as warm-up tasks, getting the participant used to the general testing situation. They consist of: Motor Screening Task and Big/Little Circle.

Motor Screening (MOT) Overview The Motor Screening test is typically administered at the beginning of a test battery, and serves as a simple introduction to the touch screen for the participant. If a participant is unable to comply with the simple requirements of this test, it is unlikely that they will be able to complete other tests successfully. This test therefore screens for visual, movement, and comprehension difficulties.

Administration Time Around 2 min Task Participants must touch the flashing cross which is shown in different locations on the screen.
Outcome Measures This test has two outcome measures which measure the participant’s speed of response and the accuracy of the participant’s pointing.
Test Modes Two modes are available – clinical and high visibility. In high visibility the crosses are drawn using thicker lines and are easier to see.

Big/Little Circle (BLC) Overview The Big/Little Circle test assesses comprehension, learning, and reversal. It is also intended to train participants in the general idea of following and reversing a rule, before proceeding to the Intra-Extra dimensional Shift test (IED), so it should ideally precede the IED task in a battery.

Administration Time Around 2 min. Task Participants must first touch the smaller of the two circles displayed, then, after 20 trials, touch the larger circle for 20 further trials.
Outcome Measures This test has five outcome measures, covering latency (speed of response) and the participant’s ability to touch the correct circle.

Test Modes One mode – clinical  Visual Memory These tests allow investigation of visual and spatial aspects of memory and consist of: Delayed Matching to Sample, Paired Associates Learning, Pattern Recognition Memory and Spatial Recognition Memory.

Delayed Matching to Sample Overview Delayed Matching to Sample (DMS) assesses forced choice recognition memory for novel non-verbalisable patterns, and tests both simultaneous and short-term visual memory. This test is primarily sensitive to damage in the medial temporal lobe area, with some input from the frontal lobes.

Administration Time Around 10 min Task The participant is shown a complex visual pattern (the sample) and then, after a brief delay, four similar patterns. The participant must touch the pattern which exactly matches the sample.
Outcome Measures This test has 19 outcome measures, assessing latency (the participant’s speed of response), the number of correct patterns selected, and statistical analysis measuring the probability of an error after a correct or incorrect response.

Test Modes Clinical mode (for testing once); five parallel modes (for repeated testing), and child mode (a simplified version for testing children)
 Paired Associates Learning (PAL) Overview This challenging test assesses visual memory and new learning, and is a useful tool for assessing patients with questionable dementia, Mild Cognitive Impairment, Alzheimer’s disease, and age-related memory loss.

Administration Time Around 10 min, depending on level of impairment Task Boxes are displayed on the screen and are opened in a randomized order. One or more of them will contain a pattern. The patterns are then displayed in the middle of the screen, one at a time, and the participant must touch the box where the pattern was originally located. If the participant makes an error, the patterns are re-presented to remind the participant of their locations. The difficulty level increases through the

to remind the participant of their locations. The difficulty level increases through the test. In the clinical mode, the number of patterns increases from one to eight, which challenges even very able participants.

Outcome Measures This test has 21 outcome measures, covering the errors made by the participant, the number of trials required to locate the pattern(s) correctly, memory scores, and stages completed.

Test Modes Clinical mode (for testing once); five parallel modes (for repeated testing)  Pattern Recognition Memory (PRM) Overview This is a test of visual pattern recognition memory in a two-choice forced discrimination paradigm. This test is often used, in conjunction with Spatial Recognition Memory (SRM), before the Paired Associates Learning (PAL) test, as both these tests help to train the participant for PAL. PRM and SRM contain different elements of PAL and the results considered together

for PAL. PRM and SRM contain different elements of PAL and the results considered together help to decide on the exact nature of the cognitive deficit being considered.

Administration Time Around 5 min, depending on level of impairment Task The participant is presented with a series of 12 visual patterns, 1 at a time, in the center of the screen. These patterns are designed so that they cannot easily be given verbal labels. In the recognition phase, the participant is required to choose between a pattern they have already seen and a novel pattern. In this phase, the test patterns are presented in the reverse order to the original order of presentation. This is

the test patterns are presented in the reverse order to the original order of presentation. This is then repeated, with 12 new patterns. The second recognition phase can be given either immediately or after a 20 min delay.

Outcome Measures This test has three outcome measures, including the number and percentage of correct trials and latency (speed of participant’s response).
Test Modes Clinical mode (for testing once); four parallel modes (for repeated testing). Each of these modes also has separate immediate and delayed versions available.

Spatial Recognition Memory (SRM) Overview This is a test of visual spatial recognition memory in a two-choice forced discrimination paradigm. This test is often used, in conjunction with Pattern Recognition Memory (PRM), before the Paired Associates Learning (PAL) test, as both these tests help to train the participant for PAL. PRM and SRM contain different elements of PAL and the results considered together help to decide on the exact nature of the cognitive deficit being considered.

Administration Time Around 5 min, depending on level of impairment Task The participant is presented with a white square, which appears in sequence at five different locations on the screen. In the recognition phase, the participant sees a series of five pairs of squares, one of which is in a place previously seen in the presentation phase. The other square is in a location not seen in the presentation phase. As with the PRM test, locations are tested in the reverse of the presentation order.

phase. As with the PRM test, locations are tested in the reverse of the presentation order. This subtest is repeated three more times, each time with five new locations.

Outcome Measures This test has three outcome measures, including the number and percentage of correct trials and latency (speed of subject’s response).
Test Modes Clinical mode (for testing once); four parallel modes (for repeated testing)  CANTAB – Executive Function, Working Memory, and Planning Tests These tests address executive function, working memory, and planning; all are associated with the frontal area of the brain.

Attention Switching Task (AST) Overview AST is a test of the participant’s ability to switch attention between the direction or location of an arrow on screen. This test is a sensitive measure of frontal lobe and ‘executive’ dysfunction.

Administration Time Around 8 min, depending on level of impairment Task The test begins with an arrow in the centre of the screen which points either to the left or to the right. The participant is introduced to two buttons, one on the left and one on the right, and is asked to press a button corresponding to the direction in which the arrow is pointing. After this initial training, the participant is then told that the arrow might appear on the left or the right side of the screen, and

is then told that the arrow might appear on the left or the right side of the screen, and depending on the cue given at the top of the screen, the participant must either press the left or right button to indicate on which side of the screen the arrow is displayed, or else press the left or right button to correspond with the direction in which the arrow is pointing.

Outcome Measures AST has 7 outcome measures, each of which can have various options applied to it. The AST measures cover latency, correct and incorrect responses, commission errors, omission errors, switch cost and congruency cost.
Test Modes AST has one mode: Clinical  Intra-Extra Dimensional Set Shift (IED) Overview Intra-Extra Dimensional Set Shift is a test of rule acquisition and reversal. It features:

• Visual discrimination and attentional set formation • Maintenance, shifting, and flexibility of attention This test is primarily sensitive to changes to the fronto-striatal areas of the brain. This test is a computerized analogue of the Wisconsin Card Sorting test, and is sensitive to cognitive changes associated with schizophrenia, Parkinson’s Disease, and dopaminergic-dependent processes.

Administration Time Around 7 min, depending on level of impairment Task Two artificial dimensions are used in the test: • Color-filled shapes • White lines Simple stimuli are made up of just one of these dimensions, whereas compound stimuli are made up of both, namely white lines overlying color-filled shapes. The participant starts by seeing two simple color-filled shapes, and must learn which one is correct by touching it. Feedback teaches the participant which stimulus is correct, and after six

correct by touching it. Feedback teaches the participant which stimulus is correct, and after six correct responses, the stimuli and/or rules are changed. These shifts are initially intra dimensional (e.g., color-filled shapes remain the only relevant dimension), then later extra dimensional (white lines become the only relevant dimension). Participants progress through the test by satisfying a set criterion of learning at each stage (six consecutive correct responses). If at any stage, the

a set criterion of learning at each stage (six consecutive correct responses). If at any stage, the participant fails to reach this criterion after 50 trials, the test terminates.

Outcome Measures This test has 18 outcome measures, assessing errors, and number of trials and stages completed.

Test Modes Clinical mode (for testing once); seven parallel modes (for repeated testing)  One Touch Stockings of Cambridge (OTS) Overview One Touch Stockings of Cambridge is a spatial planning task which gives a measure of frontal lobe function. OTS is a variant of the Stockings of Cambridge test (see below) and places greater demands on working memory as the participant has to visualize the solution.

Administration Time Around 10 min, depending on level of impairment Task As for SOC (Stockings of Cambridge), the subject is shown two displays containing three colored balls. The displays are presented in such a way that they can easily be perceived as stacks of colored balls held in stockings or socks suspended from a beam. This arrangement makes the 3-D concepts involved apparent to the participant, and fits with the verbal instructions. There is a row of numbered boxes along the bottom of

and fits with the verbal instructions. There is a row of numbered boxes along the bottom of the screen. The test administrator first demonstrates to the participant how to use the balls in the lower display to copy the pattern in the upper display, and completes one demonstration problem, where the solution requires one move. The participant must then complete three further problems, one each of two moves, three moves, and four moves. Next the participant is shown further problems, and must work

moves, three moves, and four moves. Next the participant is shown further problems, and must work out in their head how many moves the solutions to these problems require, then touch the appropriate box at the bottom of the screen to indicate their response.

Outcome Measures OTS has four outcome measures – problems solved on first choice, mean choices to correct, mean latency to first choice, and mean latency to correct. Each of these measures may be calculated for all problems, or for problems with a specified number of moves (one move to five or six moves).

Test Modes OTS has four modes, with varying numbers of problems and boxes.  Spatial Span (SSP) Overview Spatial Span assesses working memory capacity, and is a visuospatial analogue of the Digit Span test.

Administration Time Around 5 min, depending on level of impairment Task White squares are shown, some of which briefly change color in a variable sequence. The participant must then touch the boxes which changed color in the same order that they were displayed by the computer (for clinical mode) or in the reverse order (for reverse mode). The number of boxes increases from two at the start of the test to nine at the end, and the sequence and color are varied through the test.

Outcome Measures This test has six outcome measures, covering span length (the longest sequence successfully recalled), errors, number of attempts, and latency.

Test Modes Two modes: clinical mode and reverse mode.  Spatial Working Memory (SWM) Overview SWM is a test of the participant’s ability to retain spatial information and to manipulate remembered items in working memory. It is a self-ordered task, which also assesses heuristic strategy. This test is a sensitive measure of frontal lobe and “executive” dysfunction. It has been shown in recent studies that impaired performance on SWM emerges as a common factor in prepsychosis.

Administration Time Around 8 min, depending on level of impairment Task The test begins with a number of colored squares (boxes) being shown on the screen. The aim of this test is that, by touching the boxes and using a process of elimination, the participant should find one blue “token” in each of a number of boxes and use them to fill up an empty column on the right hand side of the screen. The number of boxes is gradually increased, until it is necessary to search a total of eight boxes. The

number of boxes is gradually increased, until it is necessary to search a total of eight boxes. The color and position of the boxes used are changed from trial to trial to discourage the use of stereotyped search strategies.

Outcome Measures The 24 outcome measures for SWM include errors (touching boxes that have been found to be empty, and revisiting boxes which have already been found to contain a token), a measure of strategy, and latency measures.

Test Modes Clinical mode  Stockings of Cambridge (SOC) Overview SOC is a spatial planning test which gives a measure of frontal lobe function Administration Time Around 10 min, depending on level of impairment. Task The participant is shown two displays containing three coloured balls. The displays are presented in such a way that they can easily be perceived as stacks of coloured balls held in stockings or socks suspended from a beam. This arrangement makes the 3-D concepts involved apparent

stockings or socks suspended from a beam. This arrangement makes the 3-D concepts involved apparent to the participant, and fits with the verbal instructions. The participant must use the balls in the lower display to copy the pattern shown in the upper display. The balls may be moved one at a time by touching the required ball, then touching the position to which it should be moved. The time taken to complete the pattern and the number of moves required are taken as measures of the

time taken to complete the pattern and the number of moves required are taken as measures of the participant’s planning ability.

Outcome Measures This test has three outcome measures, including the number and percentage of correct trials and latency (speed of participant’s response).

Test Modes Clinical mode  CANTAB Attention Tests These tests measure different aspects of attention and reaction time. Choice Reaction Time (CRT), Rapid Visual Information Processing (RVP), and Simple Reaction Time (SRT) use the press pad exclusively as an input device; Match to Sample Visual Search (MTS) and Reaction Time (RTI) use both the press pad and the touch screen.

Choice Reaction Time Overview Choice Reaction Time (CRT) is a two-choice Reaction Time test which is similar to the Simple Reaction Time (SRT) test, except that stimulus and response uncertainty are introduced by having two possible stimuli and two possible responses. It is useful for testing general alertness and motor speed.

Administration Time Around 7 min, depending on level of impairment Task An arrow-shaped stimulus is displayed on either the left or the right side of the screen. The participant must press the left hand button on the press pad if the stimulus is displayed on the left hand side of the screen, and the right hand button on the press pad if the stimulus is displayed on the right hand side of the screen.

Outcome Measures This test has 13 outcome measures, assessing correct and incorrect responses, errors of commission and omission (late and early responses), and latency (response speed).

Test Modes Clinical mode  Match to Sample Visual Search (MTS) Overview Match to Sample Visual Search (MTS) is a matching test, with a speed/accuracy trade-off. It is a simultaneous visual search task with response latency dissociated from movement time. Efficient performance on this task requires the ability to search among the targets and ignore the distractor patterns which have elements in common with the target. This test can help to differentiate between Parkinson’s disease and Alzheimer’s

with the target. This test can help to differentiate between Parkinson’s disease and Alzheimer’s disease, and also between Lewy Body dementia and Alzheimer’s disease.

Administration Time Around 9 min, depending on level of impairment Task The participant is shown a complex visual pattern (the sample) in the middle of the screen, and then, after a brief delay, a varying number of similar patterns are shown in a circle of boxes around the edge of the screen. Only one of these boxes matches the pattern in the center of the screen, and the participant must indicate which it is by touching it. Reaction time is measured on the basis of the release of the press

which it is by touching it. Reaction time is measured on the basis of the release of the press pad, which allows for its more accurate measurement.

Outcome Measures The 12 outcome measures for SOC cover the number of problems solved with minimum moves, the mean number of moves for n-move problems, mean initial thinking time for n-move problems, and mean subsequent thinking time for n-move problems.

Test Modes Clinical mode  Rapid Visual Information Processing (RVP) Overview Rapid Visual Information Processing (RVP) is a test of sustained attention (similar to the Continuous Performance Task) and has proved useful in many studies in which drugs are used to help develop a disease model. It is sensitive to dysfunction in the parietal and frontal lobe areas of the brain and is also a sensitive measure of general performance.

Administration Time Around 7 min Task A white box appears in the center of the computer screen, inside which digits, from 2 to 9, appear in a pseudo-random order, at the rate of 100 digits per minute. Participants are requested to detect target sequences of digits (e.g., 2–4–6, 3–5–7, 4–6–8) and to register responses using the press pad.

Outcome Measures The nine RVP outcome measures cover latency, probabilities, and sensitivity (calculated using Signal Detection Theory), and hits, misses, false alarms, and rejections.
Test Modes Clinical mode, plus 123 mode (for children aged 4–8) and 357 mode (for children aged 7–14)

Reaction Time (RTI) Overview Reaction Time (RTI) is a latency task with a comparative history (the five choice task) and uses a procedure to separate response latency from movement time. It is more useful than CRT or SRT where it is necessary to control for tremor.

Administration Time Around 5 min, depending on level of impairment Task The task is divided into five stages, which require increasingly complex chains of responses. In each case, the subject must react as soon as a yellow dot appears. In some stages, the dot may appear in one of five locations, and the subject must sometimes respond by using the press pad, sometimes by touching the screen, and sometimes both.

Outcome Measures The four outcome measures in RTI are divided into Reaction Time (simple and five-choice) and movement time (simple and five-choice)

Test Modes Clinical mode, parallel mode, and child mode  Simple Reaction Time (SRT) Overview Simple Reaction Time (SRT) is a test which measures simple Reaction Time through delivery of a known stimulus to a known location to elicit a known response. The only uncertainty is with regard to when the stimulus will occur, by having a variable interval between the trial response and the onset of the stimulus for the next trial. Like Choice Reaction Time (CRT), it is useful for testing general

the stimulus for the next trial. Like Choice Reaction Time (CRT), it is useful for testing general alertness and motor speed, and is often sensitive to medication effects.

Administration Time Around 6 min, depending on level of impairment Task As soon as the participant sees the square on the screen, they must press the button on the press pad.
Outcome Measures The 11 outcome measures for SRT cover latency (response speed), correct responses, and errors of commission and omission.

Test Modes Clinical mode  CANTAB – Semantic/Verbal Memory Tests These tests, which address semantic and/or verbal memory, are relatively new additions to the CANTAB battery consisting of: Graded Naming Test (GNT) and Verbal Recognition Memory (VRM).

Graded Naming Test (GNT) Overview The Graded Naming Test has been used extensively in cognitive neuropsychology. The Graded Naming Test (GNT) avoids the problem of ceiling effects in previous naming tests by having participants name drawings of objects in ascending difficulty. Reduced efficiency in retrieving the name of an object can be the first and only indication of impaired language functioning. This test assesses object-naming ability, but is in addition graded in difficulty to allow for

This test assesses object-naming ability, but is in addition graded in difficulty to allow for individual differ-ences. This means that it may be able to detect any word-finding difficulty even in those with an extensive naming vocabulary.

Administration Time Around 10 min, depending on level of impairment Task Thirty different line drawings are displayed on the screen, 1 at a time. The participant must identify the object depicted in each drawing.
Outcome Measures This test has six outcome measures, which include total correct, total errors, and normative z-score and percentile.

Notes Currently available in UK English only (this test is culturally biased and there are no alternative ver-sions at present). A pencil and paper version of this test is also available.

Test Modes Clinical mode  Verbal Recognition Memory (VRM) Overview Despite the general desirability of nonverbal tests because of their culture free applicability, researchers and clinical studies sometimes require verbal tests, perhaps because of need to explore questions relating to language or left hemisphere function. Other verbal tests have a long history of use in psychiatric assessment and clinical studies. The Verbal Recognition Memory test, which assesses immediate and delayed memory

clinical studies. The Verbal Recognition Memory test, which assesses immediate and delayed memory of verbal information under free recall and forced choice recognition conditions, should provide comparable results.

Task In the VRM test, the participant is shown a list of 12 words, 1 at a time, and then asked to:
• Produce as many of the words as possible immediately following the presentation
• Recognize the words they have seen before from a list of 24 words containing the original 12 words and 12 distractors
• Following a delay of 20 min, recognize the words they have seen before from another list of 24 words containing the original list and 12 new distractors

Outcome Measures The five outcome measures for VRM cover correct and incorrect responses for the recognition and free recall parts of the test.
Notes Currently available in UK English only Test Modes Clinical mode and four parallel modes for repeated testing. Each mode has immediate and delayed parts.

CANTAB – Decision Making and Response Control Tests These tests add another dimension to cognitive profiling and investigation of frontal lobe function. Most decisions in life have an emotional or risk-related component, and many clinical conditions are associated with inappropriate risk models/strategies. They consist of Affective Go/No-go (AGN), Information Sampling Task (IST), Cambridge Gambling Task (CGT) and Stop Signal Task (SST).

Affective Go/No-go (AGN) Overview This test assesses information processing biases for positive and negative stimuli. Affective cognitive functions are thought to be related to the ventral and medial-prefrontal cortex areas of the brain because of the limbic connections with this region. As such, the Affective Go/No-go test represents a powerful research assessment tool for current studies on the neural substrates of depression, bipolar disorder, Post-Traumatic Stress Disorder (PTSD), and many

neural substrates of depression, bipolar disorder, Post-Traumatic Stress Disorder (PTSD), and many other affective conditions.

Administration Time Around 10 min, depending on level of impairment Task The test consists of several blocks, each of which presents a series of words from two of three different affective categories: Positive (e.g., joyful), Negative (e.g., hopeless), and Neutral (e.g., element). The participant is given a target category, and is asked to press the press pad when they see a word matching this category.

Outcome Measures Twelve outcome measures covering latency and errors of commission and omission Note Currently available in English only. Test Modes Six modes, four using positive and negative stimuli only, and two using positive, negative, and neutral stimuli

Cambridge Gambling Task (CGT) Overview The Cambridge Gambling Task was developed to assess decision making and risk-taking behavior outside a learning context. Relevant information is presented to the participants “up-front” and there is no need to learn or retrieve information over consecutive trials. Unlike other “Gambling” tasks, CGT dissociates risk taking from impulsivity, because in the ascending bet condition, the participant who wants to make a risky bet has to wait patiently for it to

bet condition, the participant who wants to make a risky bet has to wait patiently for it to appear. The likely neural substrate for this task is the orbitofrontal prefrontal cortex. Traumatic Brain Injury, Alcoholism, and Drug abuse are all conditions sensitive to this test.

Administration Time Up to 30 min Task On each trial, the participant is presented with a row of ten boxes across the top of the screen, some of which are red and some of which are blue. At the bottom of the screen are rectangles containing the words “Red” and “Blue.” The participant must guess whether a yellow token is hidden in a red box or a blue box. In the gambling stages, participants start with a number of points, displayed on the screen, and can select a proportion of these points,

with a number of points, displayed on the screen, and can select a proportion of these points, displayed in either rising or falling order, in a second box on the screen, to gamble on their confidence in this judgment. A stake box on the screen displays the current amount of the bet. The participant must try to accumulate as many points as possible.

Outcome Measures The six CGT outcome measures cover risk taking, quality of decision making, deliberation time, risk adjustment, delay aversion, and overall proportion bet.
Test Modes Ascending first (where stakes are displayed in ascending order for two stages, then in descending order for two stages) and Descending first (where stakes are displayed in descending order for two stages, then in ascending order for two stages).

Information Sampling Task (IST) Overview The Information Sampling Task (IST) tests impulsivity and decision making. Administration Time Up to 15 min Task The subject is presented with a 5 × 5 array of gray boxes on the screen, and two larger colored panels below these boxes. The subject is instructed that they are playing a game for points, which they can win by making a correct decision about which color is in the majority under the gray boxes. They must touch the gray boxes one at a time,

which color is in the majority under the gray boxes. They must touch the gray boxes one at a time, which open up to reveal one of the two colors shown at the bottom of the screen. Once a box has been touched, it remains open. When the subject has made their decision about which color is in the majority, they must touch the panel of that color at the bottom of the screen to indicate their choice. After the subject has indicated their choice, all the remaining gray boxes on the screen reveal

After the subject has indicated their choice, all the remaining gray boxes on the screen reveal their colors and a message is displayed to inform the subject whether or not they were correct. The colors change from trial to trial. There are two conditions – the fixed win condition, in which the subject is awarded 100 points for a correct decision regardless of the number of boxes opened, and the decreasing win condition, in which the number of points that can be won for a correct decision starts

win condition, in which the number of points that can be won for a correct decision starts at 250 and decreases by 10 points for every box touched. In either condi-tion, an incorrect decision costs 100 points.

Outcome Measures The eight IST outcome measures cover errors, latency, total correct trials, mean number of boxes opened per trial, and probability of the subject’s decision being correct based on the available evidence at the time of the decision.
Test Modes IST has two modes: • Fixed win-decreasing win (after practice trials, the fixed win stage precedes the decreasing win stage)
• Decreasing win-fixed win (after practice trials, the decreasing win stage precedes the fixed win stage)

Stop Signal Task (SST) Overview SST is a classic stop signal response inhibition test, which uses staircase functions to generate an estimate of stop signal reaction time. This test gives a measure of an individual’s ability to inhibit a prepotent response.

Administration Time Up to 20 min Task This test consists of two parts. In the first part, the participant is introduced to the press pad, and told to press the left hand button when they see a left-pointing arrow, and the right hand button when they see a right-pointing arrow. There is 1 block of 16 trials for the participant to practice this. In the second part, the participant is told to continue pressing the buttons on the press pad when they see the arrows, as before, but, if they hear an

pressing the buttons on the press pad when they see the arrows, as before, but, if they hear an auditory signal (a beep), they should withhold their response and not press the button.

Outcome Measures SST has five outcome measures, each of which can have various options applied to it. The SST mea-sures cover direction errors, proportion of success-ful stops, RT on GO trials, SSD (50%), SSRT.

Test Modes SST has one mode: clinical.  Social Cognition A range of disorders are known to affect social cognition and there is an expanding research field examining how such conditions may bias cognitive processes involved in social interaction. This domain is assessed by: Emotion Recognition Task (ERT).

Emotion Recognition Task (ERT) Overview ERT measures the ability to identify emotions in facial expressions. The participant is shown a series of faces which appear on the screen briefly and asked to identify the emotion (happiness, sadness, anger, disgust, surprise and fear).

Administration Time Around 10 min, depending on level of impairment. Task One hundred and eighty stimuli, which are computer morphed images derived from the facial features of real individuals each showing a specific emotion, are displayed on the screen, one at a time, in two blocks of ninety. Each face is displayed for a short while (200 ms) and then immediately covered up, and then six buttons are displayed, each describing an emotion which could be portrayed in the photograph. The participant

displayed, each describing an emotion which could be portrayed in the photograph. The participant must decide which is the appropriate button to describe the emotion and touch the button. There are fifteen different photographs for each of the six emotions, each showing different levels of intensity.

Outcome Measures The outcome measures for ERTcover percentages and numbers correct or incorrect, and overall response latencies. Results can be looked at across individual emotions, or across all emotions at once.
Test Modes ERT is available for clinical trials immediately, and will be available for academic research in CANTABeclipse 5. Please contact Cambridge Cognition for further information. ERT takes around 10 min to administer in healthy individuals.

Other Tests  Visual Analogue Scales (VAS) Overview Visual Analogue Scales are psychometric response scales which can be used as a measurement instrument for subjective states. The CANTAB VAS assess subjective measurements of drug effect, energy levels, sickness, alertness and mood.

Administration Time Around 5 min, depending on level of impairment. Task The participant must respond to sixteen questions as they appear on the screen by touching the on-screen slider and moving it to the appropriate position on the scale.
Outcome Measures The outcome measures for this test allow you to look at the data on a question-by-question basis.
Test Modes Please contact Cambridge Cognition for information about availability for academic research.

Historical Background Grounded in the neurosciences, the CANTAB® neuropsychological tests were developed more than 21 years ago at the University of Cambridge by Professors Robbins and Sahakian, to enable detailed translational assessment and evaluation of cognitive function. Lesion, neuroimaging, clinical and psychopharmacological studies have enabled a unique understanding of the structural, clinical and biochemical sensitivities of each of the tests. (CANTAB) The CANTAB battery was

clinical and biochemical sensitivities of each of the tests. (CANTAB) The CANTAB battery was developed for the assessment of cognitive deficits in humans with neurodegenerative diseases or brain damage (Fray and Robbins 1999). It consists of a series of interrelated computerized tests of memory, attention, and executive function, administered via a touch-sensitive screen. It allows a decomposition of complex tasks commonly used in clinical assessment into their cognitive components and enables

of complex tasks commonly used in clinical assessment into their cognitive components and enables the extrapolation of findings from the animal literature. Tests include versions of the Wisconsin Card Sorting Test and the Tower of London and also the Delayed Matching to Sample test, widely used in monkeys for visual recognition memory. The tests are constructed in such a way that they may be given to animals (monkeys) with minimal change. The nonverbal nature of the CANTAB tests makes them

given to animals (monkeys) with minimal change. The nonverbal nature of the CANTAB tests makes them largely language independent and culture free. CANTAB has been standardized on a large, predominantly elderly, population and validated in neurosurgical patients as well as in patients with basal ganglia disorders, Alzheimer’s disease, depression, and schizophrenia. In addition, CANTAB has been used to evaluate: (a) the therapeutic effects of dopaminergic and cholinergic medication in

been used to evaluate: (a) the therapeutic effects of dopaminergic and cholinergic medication in neurodegenerative disease; (b) cognition in 5–11-year old normal, learning-disabled, and autistic children; (c) deficits in patients with HIV infection; and (d) early, asymptomatic Huntington’s disease. The latter illustrate its usefulness in early identification of progressive disorders. It is suggested that the battery should have particular utility across a wide range of age and intelligence in

that the battery should have particular utility across a wide range of age and intelligence in longitudinal assessment after exposure to toxicants, and allow meaningful comparison with experimental studies of toxic effects in other species.

There is emerging evidence to support the involvement of frontal cortex in autism. CANTAB is particularly useful in helping study the cognitive profile of children who have autism and related disorders.

Psychometric Data CANTAB tests are sensitive to cognitive changes caused by a wide range of CNS disorders and medication effects. Where error scores are a key outcome measure, CANTAB tests are graded in difficulty to avoid ceiling effects. Where accurate measurement of latency is important, responses are made via a press pad. Elsewhere, engaging touch-screen technology maximizes compliance. The majority of CANTAB tests are independent of language and culture.

Clinical Uses The following cognitive and other disorders have been investigated using CANTAB®:
 | Disorder 1 | Disorder 2 | |---|---| | AD/HD – Attention deficit hyperactivity disorder | Lesion in orbitofrontal cortex |

| AIDS dementia complex | Liver failure | | Alcoholism | Long-term health effects of diving | | Amphetamine addiction | Machado-Joseph disease | | Amygdalo- hippocampectomy | Mad Hatter’s disease | | Anorexia nervosa | Manic depression | | Anterior parietal damage | Melancholia | | Antisocial behavior | Mercury poisoning | | Antisocial personality disorder | Mild cognitive impairment (MCI) | | Anxiety | Motor neuron disease | | Attention deficit- hyperkinetic disorder | Multiple sclerosis | |

Anxiety | Motor neuron disease | | Attention deficit- hyperkinetic disorder | Multiple sclerosis | | Autism | Multiple system atrophy | | Basal ganglia lesions | Narcolepsy | | Bipolar disorder | Neuronal migration disorders | | Borderline personality disorder | Normal pressure hydrocephalus | | Camptocormia | Obsessive compulsive disorder | | Capgras syndrome | Organophosphate pesticide exposure | | Carcinoid syndrome | Panic disorder | | Chronic drug misuse | Paraphrenia | | Chronic fatigue

| | Carcinoid syndrome | Panic disorder | | Chronic drug misuse | Paraphrenia | | Chronic fatigue syndrome | Parkinson’s disease | | Chronic occupational solvent encephalopathy | Periventricular brain insult | | Critical illness requiring intensive care | Personality disorder | | Dementia Alzheimer-type (DAT) | Petrol (gasoline) sniffing | | Dementia lewy body type | Phenylketonuria | | Dementia of frontal type | Post-concussion syndrome | | Developmental dyslexia | Premature birth needing

of frontal type | Post-concussion syndrome | | Developmental dyslexia | Premature birth needing intensive care | | Diabetes | Premenstrual dysphoric disorder | | Dorsolateral frontal cortical compression | Progressive supranuclear palsy | | Down’s syndrome | Psychopathy | | Drug abuse | Psychosis | | Dysexecutive syndrome | Questionable Dementia | | Frontal lobe damage | Renal Cancer | | Frontal lobe excision | Roifman syndrome | | Frontal variant frontotemporal dementia | Schizoaffective

lobe excision | Roifman syndrome | | Frontal variant frontotemporal dementia | Schizoaffective disorder | | Gluten ataxia | Schizophrenia | | Hallucinosis | Seasonal affective disorder | | Head injury | Self harm | | Hearing loss | Semantic dementia | | Heart disease | Specific language impairment | | Heart failure | Social withdrawal in Schizophrenia | | Heavy social drinking | Solvent encephalopathy | | Hepatic encephalopathy | Spina bifida | | Heroin addiction | Steele-Richardson- Olzsewski

| | Hepatic encephalopathy | Spina bifida | | Heroin addiction | Steele-Richardson- Olzsewski syndrome | | Herpes encephalitis | Stiff Person syndrome | | Hippocampal atrophy | Striatocapsular infarct | | HIV/AIDS | Subarachnoid hemorrhage | | Huntington’s disease | Substance abuse | | Hydrocephalus | Tardive dyskinesia | | Hypercortisolemia | Temporal lobe excision | | Hyperostosis frontalis interna | Temporal lobe lesion | | Hypertension | Tinnitus | | Insomnia | Tourette’s syndrome | |

interna | Temporal lobe lesion | | Hypertension | Tinnitus | | Insomnia | Tourette’s syndrome | | Korsakoff syndrome | Traumatic brain injury | | Late paraphrenia | Trichotillomania | | Lead exposure | Tuberous sclerosis | | Left ventricular systolic dysfunction | White matter lesions |  Drugs Pharmacological studies (academic research) have been carried out on the following drugs using CANTAB:

| Drug 1 | Drug 2 | |---|---| | Alcohol | Flumazenil | | Modafinil | Amisulphiride | | Fluoxetine | Neuroleptic | | Amphetamine | Galantamine | | Nicotine | Antipsychotic medication | | Ginkgo biloba | Olanzapine | | Antiretroviral therapy | Glyburide | | Opiates | Atomoxetine | | Guanfacine | Paroxetine | | Branch chain amino acid drink | Highly active antiretroviral therapy (HAART) |

| Pergolide | Bromocryptine | | Haloperidol | Perindopril | | Buspirone | Heroin | | Petrol/ Gasoline | Caffeine | | Hydrocortisone | Phenserine | | Cannabis | Idazoxan | | Quetiapine | Chlorpromazine | | Idazoxan plus | Clonidine | | Risperidone | Clonidine | | Interferon | Ritalin | | Clozapine | Interleukin-2 | | Rivastigmine | Cocaine | | Kava | Rosiglitazone | | delta-9 tetrahydrocannabinol | Ketamine | | RU-486 | Dexamphetamine | | L-Dopa | Scopolamine | | Diazepam | Lecithin | | SGS742 |

Ketamine | | RU-486 | Dexamphetamine | | L-Dopa | Scopolamine | | Diazepam | Lecithin | | SGS742 | Donepezil | | MDMA | Sulpiride | | Dopaminergic medication | Metamphetamine | | Tacrine | Ecstasy | | Methylphenidate | Tryptophan | | Endozepines | Mifepristone | | Tyrosine | |    Description The Camouflaging Autistic Traits Questionnaire (CAT-Q) is a standardized self-report measure of camouflaging behaviors in autistic and non-autistic adults. It comprises 25 items and takes around 5 min to

behaviors in autistic and non-autistic adults. It comprises 25 items and takes around 5 min to complete, on paper or online. The scale consists of three sub-scales: compensation (strategies used to overcome social difficulties associated with autism), masking (strategies used to hide autistic characteristics or present a less autistic persona), and assimilation (strategies used to avoid standing out during social interac-tions). In addition to sub-scale scores, a total camouflaging score can be

out during social interac-tions). In addition to sub-scale scores, a total camouflaging score can be calculated as the sum of all scores (ranging from 25 to 175, with higher scores indicating greater camouflaging). The CAT-Q is completed by the individual themselves, reflecting on their own behaviors at the present time.

Historical Background Camouflaging describes the use of strategies, whether deliberate or automatic, to minimize the appearance of autistic characteristics during social interactions and to compensate for social difficulties associated with autism (Hull et al. 2017). Camouflaging has also been proposed as a potential explanation for the underdiagnosis of autism in females (Lai et al. 2015); if girls and women use more, or more successful, camouflaging strategies to hide or compensate for their

and women use more, or more successful, camouflaging strategies to hide or compensate for their autism, they are less likely to be identified by clinical services. This can lead to lack of support and acceptance, as well as the potential for resulting mental health difficulties (Bargiela et al. 2016; Milner et al., 2019). Recent research has also suggested that camouflaging strategies themselves may be associated with negative mental health outcomes for autistic adults (Cage et al. 2018; Hull et

be associated with negative mental health outcomes for autistic adults (Cage et al. 2018; Hull et al. 2017) and young people (Tierney et al. 2016). Until recently there has been no way to measure how much someone is camouflaging. Some researchers have quantified camouflaging as the discrepancy between an individual’s internal autistic experience (such as level of autistic traits) and the external behavioral presentation (such as ADOS score; Lai et al. 2017). This approach has generally concluded

presentation (such as ADOS score; Lai et al. 2017). This approach has generally concluded that females camouflage more than males (Lai et al. 2017, 2018; Parish-Morris et al. 2017; Ratto et al. 2018). However, the discrepancy approach to mea-suring camouflaging requires multiple, often time-consuming measures to be taken for each individual and only measures the effect camouflaging has on behavior rather than the effort put into camouflaging. An alternative measurement is the CAT-Q, which directly

than the effort put into camouflaging. An alternative measurement is the CAT-Q, which directly measures the extent of camouflaging strategies self-reported by an individual. This makes measurement of camouflaging quick and easy, and the CAT-Q is freely available to download (Hull et al. 2018).

Psychometric Data There is limited psychometric data for this measure, particularly across cultures, abilities, and age groups. The CAT-Q has been validated in autistic and non-autistic adult males and females in a large sample (N ¼ 832; Hull et al. 2018) and demonstrated good internal consistency (α ¼ 0.94 for total camouflaging scale) and acceptable test-retest reliability in a smaller sample (ICC [C,1] ¼ 0.77). Measurement invariance has also been demonstrated between autistic and

sample (ICC [C,1] ¼ 0.77). Measurement invariance has also been demonstrated between autistic and non-autistic males and females, demonstrating that the CAT-Q can be used with individuals regardless of whether they have received a formal diagnosis of autism. This is particularly important as camouflaging is likely to exist along a continuum, similarly to autistic traits (Constantino, 2011), and individuals who camouflage extensively may consequently not meet current diagnostic criteria for autism

who camouflage extensively may consequently not meet current diagnostic criteria for autism (Kreiser and White 2014). There is some evidence to support the convergent validity of the CAT-Q, with higher scores associated with higher levels of autistic-like traits (Hull et al. 2018).

Clinical Uses Camouflaging has been associated with mental health difficulties including depression (Lai et al. 2017), anxiety (Hull et al. 2018), and suicidal thoughts (Cassidy et al. 2018). The CAT-Q can be used to identify autistic adults who may be a greater risk of these co-occurring conditions and help them access support. However, norms have not yet been established for either autistic or non-autistic adults; therefore clinically meaningful cutoffs have not been identified. There is also

non-autistic adults; therefore clinically meaningful cutoffs have not been identified. There is also potential for the CAT-Q to be used as part of the autism diagnostic assessment pro-cess in adults and adolescents. Adults, particularly women, who have not yet received an autism diagnosis, may camouflage their characteristics during autism assessments, leading to under-recognition of their level of need. Further clinical research is needed to examine exactly how the CAT-Q can be integrated into

need. Further clinical research is needed to examine exactly how the CAT-Q can be integrated into gold standard assessment processes.

One common issue faced by parents, teachers, and caregivers of individuals with autism is understanding when a behavioral difficulty is due to a skill deficit (“can’t”), rather than due to deliberate noncompliance (“won’t”). Caregivers who attribute behavior problems to deliberate noncompliance often see the behavior as rooted in laziness, stubbornness, or defiance. This attribution has multiple negative consequences, including increased frustration and stress for the caregiver, as well as use

negative consequences, including increased frustration and stress for the caregiver, as well as use of ineffective or confrontational behavior management strategies. Even caregivers who have some understanding of autism may believe that the individual with autism is purposely engaging in misbehavior, and consequently become embroiled in an unproductive power struggle. The confusing behavioral picture presented by individuals with autism contributes to this misunderstanding. For example,

picture presented by individuals with autism contributes to this misunderstanding. For example, individuals with autism often have a very typical physical appearance, so the caregivers’ natural inclination is to expect age-appropriate skills and behavior. In addition, many individuals with autism, including those with language impairments, can repeat back verbal directions even when they have not fully understood the content of what was said, giving a misimpression about their level of

have not fully understood the content of what was said, giving a misimpression about their level of understanding. Furthermore, poor social insight and communication deficits may mean that individuals with autism are unable to recognize and communicate their own lack of skill or need for assis-tance, or may cause them to question directions from others in a manner that is perceived as argumentative or disrespectful. Perhaps most confusing for caregivers is the unusual scatter of strengths and

or disrespectful. Perhaps most confusing for caregivers is the unusual scatter of strengths and weaknesses shown by individuals with autism, as well as their difficulty in generalizing the use of skills from one context to another. For example, parents of a bright 14 year old with autism may simply have difficulty understanding how their son can have extensive working knowledge of his computer, yet not be able to successfully operate the microwave. A teacher of a more impaired 7 year old may be

not be able to successfully operate the microwave. A teacher of a more impaired 7 year old may be confused as to why the student can independently use the toilet at home but repeatedly soils her clothing at school.

In general, when faced with a “can’t versus won’t” dilemma, it is more productive to begin by assuming that the individual with autism “can’t” and then conduct a behavioral assessment focused on the symptoms of autism that may be impeding his or her behavioral success. The caregiver should consider the ways in which the individual’s unique profile of strengths and weaknesses in communication, socialization, flexibility and interests, sensory responses, and learning style may be contributing to

flexibility and interests, sensory responses, and learning style may be contributing to the behavioral difficulty. That information can then be used to generate positive, proactive strategies to help sup-port desired behaviors in the future.

Background In Canada, as in many other countries, a growing public awareness of autism spectrum disorder (ASD) has emerged in the context of the evidence for a rising prevalence and the existence of life-long vulnerabilities and complex medical and mental health comorbidities (Anagnostou et al. 2014). Parents and carers have been instrumental in raising this awareness, and the government has responded with the commissioning of new services, principally focused on the needs of children

has responded with the commissioning of new services, principally focused on the needs of children (Motiwala et al. 2006; Auditor General of Ontario 2013). As discussed subsequently, despite increased public funding for ASD-focused services, significant inequalities in service provision exist for specific groups, including adults and higher-functioning individuals (Shattuck et al. 2012), newly arrived immigrants (Khanlou et al. 2017), and individuals with complex health and social care needs

arrived immigrants (Khanlou et al. 2017), and individuals with complex health and social care needs (Autism Ontario 2008). Moreover, service inequalities exist between different provinces (Eggleton and Keon 2007). It is now widely recognized that there is an urgent need for uniformly accessible services for all individuals with ASD, irrespective of age or any other characteristic. The provision of a uniform service can only truly be achieved through federal involvement and ultimately a national

a uniform service can only truly be achieved through federal involvement and ultimately a national policy or legislative framework. Such a strategy has widespread support and in 2007 was a suggestion made by the Senate Select Committee (Eggleton and Keon 2007), although at this stage there is no indication of the adoption of a federal initiative. By way of background, in Canada, each province (of which there are ten, along with three territories) is responsible for providing healthcare and

(of which there are ten, along with three territories) is responsible for providing healthcare and social services for all individuals. This of course includes children and adults with developmental disabilities, such as ASD. Funds for services are raised through taxation, and each province implements its own model of service delivery. Importantly, for healthcare federal policy – by way of the Canada Health Act – still provides some oversight and direction, including the directive that

the Canada Health Act – still provides some oversight and direction, including the directive that universal access to publically funded “medically necessary” services must be ensured for all. However, the significant power devolved by the government to provincial policymakers does result in interprovincial variation in services. It is difficult to articulate the minutiae of province-by-province differences, and so this present entry will provide a simple overview, drawing examples from individual

and so this present entry will provide a simple overview, drawing examples from individual provinces but not attempting to present a detailed and comprehensive picture of ASD services across Canada.

Overview of Current Treatments and Centers  Early Diagnosis and Intervention One significant development across Canada has been the widespread availability of early intervention services for children with ASD (Anagnostou et al. 2014; Volden et al. 2015). Early intervention, based on the principles of Applied Behavior Analysis (ABA), is funded at the provincial level by those Ministries responsible for child, family, and community care. For example, in Ontario such services are commissioned by

for child, family, and community care. For example, in Ontario such services are commissioned by the Ministry of Child and Youth Services (separate from the Ministry of Health which is responsible for healthcare), in Alberta by the Ministry of Children’s Services, and in British Columbia (BC) by the Ministry of Children and Family Development. Early intervention programs (Intensive Behavioural Intervention or IBI) involve one-on-one therapy during which the child is engaged in a series of

Intervention or IBI) involve one-on-one therapy during which the child is engaged in a series of discrete trials involving reward contingencies to facilitate learning and generalization. The trials themselves focus on language and communication, as well as social and adaptive skills. Intensive intervention typically involves 20–40 h of 1:1 therapy per week over a period of 2 years, which has been shown to maximize the chance of improvement (Reitzel et al. 2015 and references therein). Research

shown to maximize the chance of improvement (Reitzel et al. 2015 and references therein). Research has consistently shown that early language and cognition are strong predictors of outcome in later childhood and into adulthood (Henninger and Taylor 2013), although outcome in later adult life may be related more closely to early social adjustment (Howlin et al. 2013). The increased availability of early intervention services has therefore been welcomed by all involved in ASD policy. Moreover,

of early intervention services has therefore been welcomed by all involved in ASD policy. Moreover, research has shown the success of such programs (Warren et al. 2011), although the research is not clear cut (Reichow et al. 2012). There is still much interprovincial variation in service delivery: for example, in Nova Scotia publicly funded IBI services are available to all young children with ASD, and this level of care is echoed in Ontario. As would be expected, with the evidence for a rising

and this level of care is echoed in Ontario. As would be expected, with the evidence for a rising prevalence, currently estimated at ~1% (or 67,000 children age between 3 and 20 years) in Canada (Anagnostou et al. 2014), the demand on these services is large, and consequently wait times are often long between receiving a diagnosis and accessing IBI. Some form of triage is often in place to target those children who are more likely to benefit. For example, in Ontario IBI is reserved for younger

those children who are more likely to benefit. For example, in Ontario IBI is reserved for younger children who have “severe autism.” Although “severe” is not explicitly defined, clinicians responsible for intake use a variety of screening tools to determine eligibility. However, even targeting services in this way, wait times are still substantial. For example, in 2013, the waitlist for IBI in Southern Ontario, comprising parts of the Greater Toronto Area (GTA) and the surrounding “Golden

in Southern Ontario, comprising parts of the Greater Toronto Area (GTA) and the surrounding “Golden Triangle,” included 1748 children (Auditor General of Ontario 2013). Slightly different service provision is seen in BC and Alberta, where public funding is provided to partly offset the costs of private intervention sourced by the family itself.

Early intervention demands that diagnosis is made as early as possible, which is dependent on the availability of expert clinical diagnostic services. Although certain groups, such as the American Academy of Pediatrics, have recommended universal screening for ASD between the ages of 18 and 24 months (Johnson and Myers 2007), the Canadian Pediatric Society instead advices developmental surveillance (Anagnostou et al. 2014). In parts of Canada, this approach has been facilitated through the use

(Anagnostou et al. 2014). In parts of Canada, this approach has been facilitated through the use of brief, validated, and reliable screening questionnaires (Zwaigenbaum 2009). While family physicians are in a position to provide early screening, however, the diagnosis itself may be delayed through the unavailability of appropriate expertise. While family physicians are the frontline staff involved in developmental surveillance, the responsibility for early diagnosis rests with existing

involved in developmental surveillance, the responsibility for early diagnosis rests with existing services, such as developmental pediatrics and child psychiatry. The provision of adequate training to primary and secondary healthcare workers is therefore crucial.

School-Aged Children Services for school-aged children have also seen progress in recent years. In some provinces, the focus remains on early intervention for preschoolers, whereas other provinces have also developed services for children with ASD up to the age of 18 years. In Ontario, for example, services have developed to meet the varying needs of this population using ABA principles. Among some children with ASD, particularly those who function typically, the focus may be on social skills,

children with ASD, particularly those who function typically, the focus may be on social skills, often, although not necessarily, delivered in a group setting, whereas for others, it may be behavioral or adaptive needs. The emphasis is on mastering skills one at a time and then learning to apply these in everyday settings. In 2013, the median age of children accessing this service was 8 years, with 90% age 14 or younger indicating that older children and those in transition (i.e., age 17–18

with 90% age 14 or younger indicating that older children and those in transition (i.e., age 17–18 years) may not be accessing services. In addition to therapy that targets the core symptoms of ASD, there is also a need for mental health services to address the high level of emotional distress and comorbidity among children with ASD (Drmic and Szatmari 2014). The impact on later outcome for therapy aimed at school-aged children will need to be fully evaluated.

Adults Services for adults with ASD in Canada have lagged behind those for children (Stoddart et al. 2013). It is estimated that in the region of 4900, teenagers with ASD in Canada reach their 18th birthday each year (Shattuck et al. 2012). Based on current epidemiological estimates, as many as 70% of these may have IQs in the typical range (Centers for Disease Control and Prevention 2014). Despite this, however, the outcome for many is poor. For example, studies of outcomes consistently find

this, however, the outcome for many is poor. For example, studies of outcomes consistently find low to modest levels of indepen-dence and the persistence of core phenotypic traits and associated developmental and mental health vulnerabilities beyond childhood (Howlin et al. 2013). It is clear, therefore, that for an individual with ASD – irrespective of their IQ – health and community/social care needs will remain significant throughout much of their lives (Stoddart et al. 2013; Autism Ontario

needs will remain significant throughout much of their lives (Stoddart et al. 2013; Autism Ontario 2008). With increases in life expectancy, this potentially represents a public health crisis. Indeed, on an individual basis, the lifetime costs associated with ASD have been estimated at up to $2.44M US dollars in the USA and UK (Buescher et al. 2014).

Healthcare for adults with ASD in Canada is met according to the universal healthcare principals of the Canada Health Act. Specialist mental health services for adults with developmental disabilities do exist but are not government mandated. Such services focus on the mental health and behavioral needs of adults with IQs below 70, and as such, many adults with ASD will not meet the access criteria. For those adults who do have IQs 70 or above, it is expected that existing mental health

criteria. For those adults who do have IQs 70 or above, it is expected that existing mental health services will meet their needs, although this is often not the case, with some excluded from community mental health services as a result of their ASD diagnosis, essentially leaving them “doubly socially excluded.” This is even more concerning when the statistics are considered: in one study examining comorbidity, as many as 70% of young adults with ASD had experienced one or more episode of major

comorbidity, as many as 70% of young adults with ASD had experienced one or more episode of major depression, with 50% experiencing recurrent depression and 50% describing an anxiety disorder (Lake et al. 2014). In Canada, vocational and social care needs, including the provision of supported accommodation, are met by the Ministry responsible for the commission of community and social services. Among those who have an intellectual disability, i.e., evidence of IQ <70 along with adaptive

Among those who have an intellectual disability, i.e., evidence of IQ <70 along with adaptive impairments, a variety of services are available, although the large demand for services results in long wait times. Such services include supported living and respite, supported employment and other vocationally centered programs, and behavioral services. Adults with ASD who have IQs above 70, however, are generally denied access to such services (Stoddart et al. 2013; Autism Ontario 2008). As such,

are generally denied access to such services (Stoddart et al. 2013; Autism Ontario 2008). As such, the emphasis has been on private initiatives. For example, in Alberta the Sinneave Foundation in collaboration with the consulting firm Meticulon provides individuals with autism an opportunity to work with the IT field while providing them with the appropriate wages. The availability of similar initiatives exist across the country.

Specific Issues Rural communities have identified a definite lack of resources and services when tending to the needs of their children. The lack of medical support has made life difficult for families and pro-viding proper treatment difficult as there are no professionals or workers to provide the training and insight to how to provide the best environ-ment for their children to grow (Hoogsteen and Woodgate 2013). Similar barriers to service access is seen among newly arrived immigrants to Canada

Woodgate 2013). Similar barriers to service access is seen among newly arrived immigrants to Canada (Khanlou et al. 2017). Rates of ASD have been shown to be 36% higher in children of immigrant mothers. Considering the fact that migration is an integral part of Canadian federal policy and that a significant proportion of Canada’s population is made up of newly arrived immigrants, this represents a major area of need. Addressing this requires a better understanding of the barriers to care, which

major area of need. Addressing this requires a better understanding of the barriers to care, which will include, for example, language and knowledge of existing structures, as well as federal policy to overcome these barriers. Other specific issues relate to the organization of existing structures of care. For example, transition planning and implementation continues to present a major challenge for families, with the negotiation of adult services an extra hurdle at an already difficult time

for families, with the negotiation of adult services an extra hurdle at an already difficult time (Gorter et al. 2011). Hospitals themselves are often not set up to manage individuals with ASD and other developmental disabilities effectively. For example, it has been argued that emergency departments are poorly equipped to accommodate patients with ASD appropriately (Nicholas et al. 2016). Key problems identified are lack of communication and training. The same concern has been expressed in

problems identified are lack of communication and training. The same concern has been expressed in relation to primary care, although initiatives such as the Primary Care Developmental Disabilities Network in Ontario attempts to overcome this barrier through more adequate training (Sullivan et al. 2011).

Overview of Research Directions Canada has a long tradition of research in ASD, with basic and applied scientific approaches being used to further the knowledgebase on ASD. These comprise a number of multisite, high-impact, studies. By way of example, two research pro-grams are briefly highlighted below.

Pathways This large, multisite project comprises researchers across five Canadian provinces (Ontario, Quebec, Nova Scotia, Alberta, and British Columbia). It has recruited newly diagnosed children with ASD, aged between 2 and 4 years, and prospectively following these children to examine their developmental trajectories (Szatmari et al. 2015). Across time, data is collected at four separate intervals, with core symptomatology, behavior, and adaptive function all being measured in detail. This

with core symptomatology, behavior, and adaptive function all being measured in detail. This is a powerful design for a number of reasons. Importantly, most previous studies have recruited participants at different points in the natural history of their disorder. Without sampling an inception cohort (a group assembled at a common time point early in the development of the disorder), there is no way of ensuring that all subgroups of children with ASD are included in the sampling frame.

is no way of ensuring that all subgroups of children with ASD are included in the sampling frame. Additionally, in many other studies, individuals with ASD are recruited through clinics, which may introduce bias into the outcomes being observed.

Genetics Canada has a long tradition of genetics research in autism spectrum disorder, utilizing state-of-the-art techniques to attempt to unravel the genetic com-ponent of ASD’s etiology. In recent years, the focus has been on identifying de novo and inherited unbalanced copy number variation (CNV) (Pinto et al. 2014), including variation at the single nucleotide level (SNV). The current research activities of this multisite, multi-disciplinary group focus on the MSSNG project, a

research activities of this multisite, multi-disciplinary group focus on the MSSNG project, a collaboration between Google and Autism Speaks under the directorship of Prof. Steve Scherer that aims to sequence the DNA of over 10,000 families with one or more members affected by autism (Yuen et al. 2017).

Current Controversies The development of services in Canada in recent years has seen a major injection of money, particularly in relation to IBI programs aimed at young children. These programs have been developed along evidence-based lines and are constantly evaluated to make certain of clinical impact. The provincial-led nature of these programs means that there remain inequalities of care across the country as a whole, with rural communities often having the least joined-up level of care.

the country as a whole, with rural communities often having the least joined-up level of care. Furthermore, adults, and particularly those who are higher functioning, have seen the least in the way of service development. The need for a federal approach to ASD-specific policy has been raised but not yet adopted.

Definition Although twin and family studies show that genes play a critical role in determining the risk for autism, its specific genetic etiology remains largely unknown. A candidate gene is one for which there is some evidence of contribution to the etiology of a disorder but for which this has not yet been definitively demonstrated. These genes are identified by a variety of techniques including linkage analysis, association studies, cytogenetic analysis, studies of copy number variation, and

linkage analysis, association studies, cytogenetic analysis, studies of copy number variation, and next-generation sequencing. Typically, once a candidate gene has been identified, it is reinvestigated via analysis in independent patients’ samples. Particularly for studies that rely on case–control comparisons, replication is essential to elevating a candidate gene to a “risk” gene.

Historical Background Over the past decade, many studies have shown that autism is not a simple Mendelian disorder caused by a single gene at the population level. In the early phase of autism gene discovery, the majority of candidate genes were selected for study based on biological plausibility; that is, they were involved in some biological process that could conceivably play a role in ASD. These genes were then typically evaluated in candidate gene association studies in which one or a

These genes were then typically evaluated in candidate gene association studies in which one or a small number of common genetic polymorphisms in or near one or a small number of genes were evaluated in cases versus controls. If an overrepresentation of a particular allele or alleles was identified, the gene was considered a candidate ASD gene. These studies were based on the hypothesis that common alleles were responsible for the disorder. Across all of medicine, the majority of such studies

alleles were responsible for the disorder. Across all of medicine, the majority of such studies proved difficult to replicate. In retrospect, it is clear that approach had some significant limi-tations. Among these, the chances of choosing correctly among millions of genetic variations were low, the effect sizes carried by common alleles for most common medical conditions were much smaller than anticipated (resulting in studies that were in retrospect often markedly underpowered), and there were

(resulting in studies that were in retrospect often markedly underpowered), and there were multiple potential confounds, including ancestral mismatching of cases and controls, that were difficult to control for. More recently, the approach has been replaced for the most part by genome-wide association studies, typically of large patient cohorts, that eliminate many of these difficulties. This approach has led to the identification of replicated risk alleles in many common medical conditions,

approach has led to the identification of replicated risk alleles in many common medical conditions, including schizophrenia and bipolar disorder.

Over the last several years, the identification of candidate genes through studies of common variation has been complemented by studies of rare variation. Here again, it is common practice to pursue an initial observation with an attempted independent replication. With rare variations, the infrequency of individual mutations and the overall genetic heterogeneity of autism may make such studies difficult to mount. A variety of approaches are being developed in an effort to provide a path to

difficult to mount. A variety of approaches are being developed in an effort to provide a path to confirm candidate loci: these include assessing the total amount of rare varia-tion in a gene in cases versus controls (as opposed to asking questions about one particular rare allele). This approach is often called a mutation burden analysis. In addition, there are ongoing efforts to take advantage of particular types of variation, including de novo mutations, to increase the power to detect and

of particular types of variation, including de novo mutations, to increase the power to detect and confirm the asso-ciation of a gene or locus with ASD risk (Sanders et al. 2011).

Current Knowledge  Genome-Wide Linkage Studies Linkage studies identify chromosomal loci inherited by affected individuals more frequently than expected by chance. These studies most often investigate multiplex families in which there is more than one affected person. DNA polymorphisms are used as markers of chromosomal loci throughout the genome. The closer the marker is to a disease gene, the more likely there is cosegregation between the marker and the phenotype under study. The likelihood

more likely there is cosegregation between the marker and the phenotype under study. The likelihood that a locus is linked to the phenotype is represented as the LOD score (logarithm of the odds). For example, a LOD score of 3 means that there is 1,000 to 1 odds that the locus is linked to the phenotype. When the LOD score is more than 2.2, linkage is considered suggestive; 3.6 is considered significant (Lander and Kruglyak 1995). Linkage peaks have been found on almost every chromosome. As

significant (Lander and Kruglyak 1995). Linkage peaks have been found on almost every chromosome. As reviewed by Gupta and State (2007), loci with among the highest LOD scores are 3q26.32 (LOD 4.81), 2q31.1 (LOD 4.80), 17q11.2 (LOD 4.3), 17q21.32 (LOD 4.1), and 7q36.1 (LOD 3.7). For the most part, linkage studies in autism have failed to replicate each other, probably due to a number of reasons, such as nonuniform criteria for patient selection, differing sets of polymorphisms, and differing

such as nonuniform criteria for patient selection, differing sets of polymorphisms, and differing statistical methodologies. A few loci, such as 17q11-q21 and along 7q, have been highlighted by more than one study (Abrahams and Geschwind 2008). Some of the genes implicated are CNTNAP2 (contactin-associated protein-like 2), EN2 (engrailed homeobox 2), RELN (reelin), MET (MET proto-oncogene), CADPS2 (Ca2+-dependent activator protein for secretion 2), ITGB3 (integrin beta3), and SLC6A4 (solute

(Ca2+-dependent activator protein for secretion 2), ITGB3 (integrin beta3), and SLC6A4 (solute carrier family 6) (Abrahams & Geschwind). Linkage studies have also been conducted in consanguineous families using homozygosity mapping. Homozygous regions are parts of the genome where the identical chromosomal segment is inherited from both parents due to a recent common ancestor. In homozygosity mapping, it is hypothesized that the disorder is inherited as a recessive trait. Candidate genes found

it is hypothesized that the disorder is inherited as a recessive trait. Candidate genes found by this method include DIA1 (deleted in autism-1), NHE9 (sodium/proton exchanger 9), PCDH10 (protocadherin 10), and CNTN3 (contactin 3) (Morrow et al. 2008).

Candidate Gene and Genome-Wide Association Studies Association studies determine whether there is a statistically significant relationship between expo-sure to the variant and increased (or decreased) population risk for the phenotype. Numerous genetic association studies have investigated common variants in one or a small number of candidate genes, often selected due to hypothesis-driven disease models. Since these studies are relatively inexpensive, many genes have been evaluated for

disease models. Since these studies are relatively inexpensive, many genes have been evaluated for associa-tion with autism, with multiple positive results. However, very few of them have been replicated (Gupta and State 2007). Some genes identified by this method are GABRB3 (gamma-aminobutyric acid A receptor beta3), GRIK2 (glutamate receptor ionotropic kainite 2 precursor), SLC25A12 (solute carrier family 25 member 12), MET, RELN, EN2, SLC6A4, and CNTNAP2 (Abrahams and Geschwind 2008; State

family 25 member 12), MET, RELN, EN2, SLC6A4, and CNTNAP2 (Abrahams and Geschwind 2008; State 2010). Rare variants can also be investigated by association studies, but this method requires comprehensive resequencing of candidate genes in large cohorts and is expensive. In addition to common variants, rare variants in CNTNAP2 have been associated with autism (Bakkaloglu et al. 2008). More recently, high-resolution SNP arrays have enabled genome-wide association studies (GWAS), which query all

high-resolution SNP arrays have enabled genome-wide association studies (GWAS), which query all genes rather than investigating a few candidate genes at a time. Three loci which have been associated with autism are chromosome 5p14.1, between the genes CDH9 (cadherin 9) and CDH10 (cadherin 10), chromo-some 5p15, near the gene SEMA5A (semaphoring 5A), and chromosome 20p12.1, near the gene MACROD2 (MACRO domain containing 2) (reviewed by State 2010). CDH9 and CDH10 are interesting candidate genes

domain containing 2) (reviewed by State 2010). CDH9 and CDH10 are interesting candidate genes since they are involved in neuronal cell adhesion. SEMA5A has been implicated in axonal guidance.

Cytogenetic Analysis Cytogenetic analysis is the study of chromosomal abnormalities such as inversions, translocations, duplications, deletions, and aneuploidies. Traditionally, these abnormalities have been detected via karyotype analysis (microscopic examination of chromosomes). A review by Veenstra-VanderWeele et al. (2004) calculated that 4.3% of the 1826 karyotypes published in the ASD literature are abnormal. Abnormalities have been found on every chromosome, indicating that no one

literature are abnormal. Abnormalities have been found on every chromosome, indicating that no one rearrangement is responsible for any substan-tial fraction of cases. The most common chromosomal abnormality found in ASD is maternally inherited duplications at 15q11-q13 (Abrahams and Geschwind 2008). Some genes which have been implicated by cytogenetic analysis include NLGN4X (neuroligin 4X), UBE3A (ubiquitin pro-tein ligase E3A), GABRB3, CENTG2 (centaur

Initiation of the ASD-CP was associated with a significant reduction in holds and restraints in both brief-stabilization and inpatient settings. Further, a 40% decrease in total length of stay approached statistical significance in this small, initial study (Kuriakose et al. 2018). A subsequent study was then conducted to examine the sustain- ability of these results, adding a third comparison group of youth who received the ASD-CP in the 18 months following the initial implementation period.

of youth who received the ASD-CP in the 18 months following the initial implementation period. Results from this study demonstrated that reductions in the use of crisis interventions, including holds, restraints, and intramuscular medications, were sustained, while the non- statistically significant trend toward decreased length of stay was no longer present (Cervantes et al. 2019). Taken together, current data suggest that the ASD-CP can be implemented and sustained with limited resources and

current data suggest that the ASD-CP can be implemented and sustained with limited resources and minimal expertise and is associated with improved patient care.

### Future Directions  While the results of significant and continued reductions in crisis interventions are exciting and essential, research into the ASD-CP requires fur- ther development. First, these initial studies were small, and the samples were heterogeneous. Therefore, replication across sites and with larger samples is needed to improve confidence in the effects of the ASD-CP. We also do not currently have documented evidence of intervention fidel- ity. However, the process of data

do not currently have documented evidence of intervention fidel- ity. However, the process of data abstraction from medical records across the first two studies exposed inconsistent use of some of the ASD- CP tools, particularly those that required docu- mentation (e.g., staff schedule). Although it is undeterminable how ASD-CP components that do not require documentation (e.g., first-then card, simplifying language) were implemented, the inconsistent use of those that do suggests that the

simplifying language) were implemented, the inconsistent use of those that do suggests that the improvements seen may be due to a milieu change, such that changes in staff self-efficacy and understanding are responsible for the reduc- tions in their use of crisis interventions (Cervantes et al. 2019). A more formal evaluation of how patient care and outcome relates to staff fidelity on ASD-CP intervention components and staff acceptability of ASD-CP strategies is currently underway. Importantly

components and staff acceptability of ASD-CP strategies is currently underway. Importantly though, because fidelity estimates are captured by record review, we are limited by a lack of formal documentation of use across strategies. Therefore, we are now creating a feasible process for assessing implementation of tools and strategies across each staff shift using a brief fidelity checklist. Improved understanding of intervention acceptability and fidelity, and how these factors might influence

understanding of intervention acceptability and fidelity, and how these factors might influence patient care and outcome, will allow us to identify key com- ponents of the ASD-CP and thus pare down the intervention to increase feasibility. Subsequently, staff supports will be further developed to encour- age consistent implementation of essential com- ponents. For instance, we will be adding periodic booster training sessions for all retained staff.

Further, as reported, the ASD-CP was designed for a distinct subpopulation of the autism spec- trum. However, youth with ASD who do not meet criteria for the ASD-CP also require thoughtful adaptations to treatment as usual in psychiatric inpatient settings. Future research should assess the utility and feasibility of implementation of ASD-CP strategies for youth of varying severity levels and presentations. Of note, presenting con- cerns may differ between and within groups of youth who do and

Of note, presenting con- cerns may differ between and within groups of youth who do and do not meet criteria for the ASD-CP. For example, it is not uncommon for youth with ASD to present with internalizing symptoms, such as anxiety, post-traumatic stress disorder (PTSD), depression, and/or suicidality (Siegel 2018). These individuals would likely require variations in programming that are distinct from both the ASD-CP and treatment as usual. Additional resources for assessing and addressing the

from both the ASD-CP and treatment as usual. Additional resources for assessing and addressing the unique needs of these children in non- specialized psychiatric inpatient settings are required.

Finally, researchers have found that psychiatric hospitalization in specialized settings is associ- ated with lower recidivism rates for youth with ASD (Gabriels et al. 2012). It is essential that we also study long-term outcomes for patients who receive the ASD-CP. While it is promising there were demonstrated improvements in care during their stay, understanding if and how the ASD-CP improves patient utilization trajectories and tran- sitions to less restrictive care environments post

patient utilization trajectories and tran- sitions to less restrictive care environments post discharge is integral and would have significant public health implications given the high costs associated with hospitalization. Readmission rates are often elevated in this population of chil- dren, as demonstrated by the proportion of youth excluded from evaluation due to readmission sta- tus (~10%) across our studies (Kuriakose et al. 2018). While quality of care during psychiatric hospitalization

our studies (Kuriakose et al. 2018). While quality of care during psychiatric hospitalization contributes to this, readmission rates are also largely driven by the considerable lack of appropriate community supports available for patients to transition to after their stay. This systemic issue of limited accessibility of supports increases both the prevalence of psychiatric hos- pitalization and the economic burden of ASD. Importantly, researchers have found that higher spending on ASD-specific

the economic burden of ASD. Importantly, researchers have found that higher spending on ASD-specific outpatient services and on respite care in particular was associated with significant reductions in the likelihood of psychiatric hospitalization (Mandell et al. 2012, 2019). Therefore, not only are improvements in inpatient care necessary, but it is essential that we continue to work to increase accessibility to evidence-based treatments and family supports to prevent hospitalization and keep

accessibility to evidence-based treatments and family supports to prevent hospitalization and keep youth with ASD integrated in the community.

### See Also  *   ▶Emergency Department Utilization and Autism *   ▶Irritability in Autism *   ▶Mental Health and ASD *   ▶Suicidality in Children and Adolescents with Autism  ### Caregiver Consent to a Pediatric Neurodevelopmental Research Registry Luke Kalb Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Kennedy Krieger Institute’s Center for Autism and Related Disorders, Baltimore, MD, USA  ### Definition  There has been a historical lag in the development of

Baltimore, MD, USA  ### Definition  There has been a historical lag in the development of evidenced-based interventions for youth with neurodevelopmental disorders (NDD), including those with autism spectrum disorder (ASD). One well-known barrier to the development of empir- ically sound interventions is research recruitment. Problems with study recruitment and retention can result in the delay and/or termination of inter- vention studies. This methodological problem can also result in the

and/or termination of inter- vention studies. This methodological problem can also result in the selection of study participants who are not representative of the target popula- tion, leading to biased study estimates. Recruit- ment of youth with NDD can be particularly challenging, when compared to the neurotypical population, since the caregiver will have to simul- taneously manage the child’s extensive healthcare needs alongside participating in a research protocol.

One potential solution to improve recruitment to NDD studies is through the use of research registries. There are many types of registries, including national or international disorder- specific registries as well as registries that recruit from a particular clinic or institution (hereafter referred to as clinic registries). Joining a clinic registry, which is governed under an institutional review board, offers parents the opportunity to hear about and potentially engage in local research

review board, offers parents the opportunity to hear about and potentially engage in local research opportunities. For the investigator, it pro- vides a low-cost option to actively recruit partic- ipants, rather than simply relying on passive recruitment methods (e.g., flyers, word of mouth).

There is evidence to suggest that most care- givers raising a child with or at risk of NDD are agreeable to joining a clinic registry, when offered the opportunity during their child’s evaluation. This finding is valuable as it speaks to parent’s overall interest in joining the research enterprise. However, this conclusion is drawn from the only known study of this topic.

There also appears to be disparate trends across settings in terms of the proportion of families who consent to join the clinic registry. Settings that primarily serve the ASD populations, rather than those serving youth with NDD as a whole, may find increased registry consent rates over time. There are many possible reasons for this finding, including the nature of the setting. If it is a one- time evaluation center, families may be less inter- ested at the prospect of an ongoing research rela-

evaluation center, families may be less inter- ested at the prospect of an ongoing research rela- tionship compared to a setting where their child may be receiving care over an extended period of time. There may be something unique to the ASD population as well. There are numerous national organizations and initiatives that have brought science to the general conscious of the ASD com- munity, including the federally funded Autism Act, the Simons Foundation SPARK project, and Autism Speaks.

including the federally funded Autism Act, the Simons Foundation SPARK project, and Autism Speaks. These disparate efforts may have created a culture of scientific collaboration not seen in other populations.

Family sociodemographic factors play an important role as to whether families consent to a clinical registry. For the caregiver, race and socioeconomic status likely influence their deci- sion. Race and ethnicity, in particular, may be related to medical mistrust given the historical research injustices (e.g., Henrietta Lacks) faced by people of color. The nature of the clinical registry, which elicits consent to contact for an unspecified prospective project, may exacerbate feelings of mistrust

consent to contact for an unspecified prospective project, may exacerbate feelings of mistrust since caregivers are providing consent to hear about an unknown endeavor. Lastly, families with low income may be less likely to consent since they may not have the resources (e.g., ability to travel) or time to become involved in a research project.

Beyond sociodemographics, it is likely the child’s clinical characteristics influence care- giver’s interest in research. There is evidence to suggest that caregivers of children with increased mental health issues may be more apt to consent. This may reflect the parents desire to enroll in a study that could assist with such problems or the desire to help other children like theirs. It would follow that increased core developmental issues, such as the presence of increased ASD symptoms, would

that increased core developmental issues, such as the presence of increased ASD symptoms, would be positively related to caregiver consent, just like mental health symptoms. However, increased ASD severity has not been associated with an increased likelihood of registry consent. There is research to suggest that these core devel- opmental issues are less stressful to caregivers than the presence of behavior problems. Perhaps the consent findings mimic this body of research on stress.

Much more research is needed on trends and predictors of consent to clinic registries involv- ing youth with NDD. Qualitative approaches that identify reasons for consent, or lack thereof, are particularly needed. This work would shed light on the speculative reasons, put forth above, for why particular populations are more or less likely to consent. Future research should also seek to replicate the existing findings, identify novel predictors of consent, and examine this topic among other

the existing findings, identify novel predictors of consent, and examine this topic among other pediatric populations.

### Caregiver Training Program  *   ▶Babysitter Training Guide for Families with Individuals with ASD  ### Carnosine Fred R. Volkmar Child Study Center, Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology, Yale Child Study Center, School of Medicine, Yale University, New Haven, CT, USA  ### Synonyms  beta-Alanyl-L-histidine  ### Definition  Carnosine is a compound formed from two amino acids (histidine and alanine) and is found in sev- eral organ systems including muscle

two amino acids (histidine and alanine) and is found in sev- eral organ systems including muscle and brain. A number of possible biological roles for this compound have been suggested including antiox- idant properties. It has been used experimentally in several disorders. One small double-blind study in 2002 by Chez and colleagues reported positive initial findings, although the study was criticized on various grounds and the results have not yet been well replicated in the scientific

criticized on various grounds and the results have not yet been well replicated in the scientific literature.

### See Also  *   ▶Neurochemistry  ### CARS  *   ▶Childhood Autism Rating Scale  ### CARS, Second Edition, High-Functioning Version  *   ▶Childhood Autism Rating Scale  ### CARS, Second Edition, Questionnaire for Parents or Caregivers  *   ▶Childhood Autism Rating Scale  ### CARS, Second Edition, Standard Version  *   ▶Childhood Autism Rating Scale  ### CARS2-HF  *   ▶Childhood Autism Rating Scale  ### CARS2-QPC  *   ▶Childhood Autism Rating Scale  ### CARS2-ST  *   ▶Childhood Autism Rating

### CARS2-QPC  *   ▶Childhood Autism Rating Scale  ### CARS2-ST  *   ▶Childhood Autism Rating Scale  ### Case Report  *   ▶Case Study  ### Case Study Fred R. Volkmar Child Study Center, Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology, Yale Child Study Center, School of Medicine, Yale University, New Haven, CT, USA  ### Synonyms  Case report  ### Definition  Case studies are frequent in both biomedical and behavioral psychological research. A typical case study

studies are frequent in both biomedical and behavioral psychological research. A typical case study (sometimes referred to as case report) pro- vides a focused report of an individual or series of individuals to illustrate some important issue rel- evant to clinical work or research. Many of the conditions now recognized as significant causes of developmental disability first appeared as case reports, for example, Down syndrome and child- hood autism. Sometimes case reports are used to draw

reports, for example, Down syndrome and child- hood autism. Sometimes case reports are used to draw attention to other relevant issues, for exam- ple, new approaches to treatment. Case studies from the behavioral literature may be used to illustrate the possible effectiveness of a new inter- vention, for example, the subject is used as his/her own control with data collected pre-, during, and postintervention. In other fields such as business or law, case studies take other formats.

Case studies may be primarily descriptive or may be more theoretical in nature. Sometimes, as in the case of Down syndrome (trisomy 21), the underlying theory may prove profoundly wrong but the observation is very robust (in the case of Down syndrome, the report from Dr. Down appeared well before there was any awareness of the importance of human chromosomes in devel- opment and disease). Case studies can bring atten- tion to new phenomena, can serve as a vehicle for teaching or documenting a

can bring atten- tion to new phenomena, can serve as a vehicle for teaching or documenting a potentially important clinical issue, and may, over time, lead to more focused hypothesis-based research. As noted, single-subject research methods provide possibil- ities for statistically based evaluation within a report focused on a single case.

While case studies have importance in focus- ing attention on new observations and stimulating hypothesis testing and theory building, they also have some important limitations. Various factors can go into the selection of the case that is reported, and generalization is therefore difficult. There is an obvious tendency on the part of editors and reviewers to support positive association reports (rather than negative ones) in case studies and again generalization can be limited. Cases may also

(rather than negative ones) in case studies and again generalization can be limited. Cases may also be reported with these multiple publica- tions of the same case contributing to a perception of greater significance than actually is apparent. As a result, many journals now have limited pub- lication of case reports.

One example in the autism research is provided by the many case reports of autism associated with a host of medical conditions ranging from congen- ital

autism who do pass first- and second-order tests come to do so with a significant delay. This fits well with results found in Happé’s (1995) meta-analysis of 13 false belief studies showing that the minimum verbal mental age (VMA) at which participants pass false belief tasks is 3.62 years in TD children and 5.5 years in children with ASD. Under the assumption that there is a critical period for the development of numerous cognitive skills, this delay could account for persisting def-icits in the

development of numerous cognitive skills, this delay could account for persisting def-icits in the communicative and social realms. The second hypothesis is that surface-level performance is to be distinguished from actual competence. It is indeed possible that the individuals with an ASD who pass ToM tests use strategies that greatly differ from ordinary ToM mechanisms. One should thus refrain from assuming that intact performance reflects intact competence. This is in line with the fact that

from assuming that intact performance reflects intact competence. This is in line with the fact that more advanced tests of ToM reveal impaired perfor-mance even in individuals on the highest end of the spectrum. In the Strange Stories test (Happé 1994), for instance, participants are asked to jus-tify why a character might have chosen to say what he says in a complex mentalistic situation. For example, a prisoner gets captured by enemy troops and upon being asked where the rest of his camp is

a prisoner gets captured by enemy troops and upon being asked where the rest of his camp is hidden, the prisoner decides to reveal the exact location in the hope that the enemy will believe that he’s lying and therefore send troops to the opposite location. Understanding this use of “double bluff” is a complex mind reading achievement that turns out to be especially chal-lenging for individuals with autism, including for those individuals who do pass second-order the-ory of mind tests.

with autism, including for those individuals who do pass second-order the-ory of mind tests. Similarly, Baron-Cohen and colleagues found that adults with a high-functioning ASD who were able to pass first- and second-order standard ToM tests were nonetheless impaired in a subtle form of tests, assessing the ability to “read the mind in the eyes.” In this test, participants look at pictures of the eye region displaying specific emotions and select the appropriate emotional adjective best

of the eye region displaying specific emotions and select the appropriate emotional adjective best describing the person’s mental state (e.g., despondent, relieved, excited, shy). The fact that adults on the highest end of the autism spec-trum are less proficient than control populations in these kinds of tests suggests that difficulties dealing with psychological states are long lasting and can persist in even milder forms of the condition.

Future Directions Standard false belief tasks and more subtle tests of mind reading have lent support to the idea that ToM deficits are widespread in ASDs. Whether this impairment is primary or simply consecutive to more basic deficits, however, is still debated. In particular, some researchers have argued that ToM deficits may be the consequence of a more primary deficit in social orienting or social atten-tion. More specifically, this alternative hypothe-sis posits that autism is characterized by

atten-tion. More specifically, this alternative hypothe-sis posits that autism is characterized by a primary disturbance in the motivational and executive processes that prioritize orienting to social stimuli. In this framework, decreased expertise in social cognition and ToM would be the result of reduced time spent attending to the social world (see e.g., Dawson et al. 2002; Schultz 2005). In one case then, impaired ToM is the result of impaired social attention. In the other, impaired ToM is

case then, impaired ToM is the result of impaired social attention. In the other, impaired ToM is the primary deficit behind decreased social attention. Telling these two hypotheses apart is the matter of further empiri-cal investigation, perhaps through comparison of different clinical groups or longitudinal studies of individual differences within the autism spectrum.

Theraflu® Thin Strips® Multi symptom [OTC]  Therapeutic Education  Therapist  Thimerosal Definition In 1999, the Public Health Service and the American Academy of Pediatrics issued a letter to pharmaceutical companies to remove thimer-osal, an ethylmercury-containing preservative, from vaccines as quickly as possible. During the previous decade, as more vaccines were added to the infant vaccination schedule, some of which contained thimerosal, infants were exposed to greater quantities of

schedule, some of which contained thimerosal, infants were exposed to greater quantities of ethylmercury. By 1999, it was possible for infants to receive as much as 187.5 ug of ethylmercury in the first 6 months of life. Regulators were worried that this quantity of mercury might cause subtle signs of mercury toxicity. Because no studies existed to refute this concern, public health officials cited the precautionary principle and urged removal.

The precipitous and frightening manner in which thimerosal was removed from vaccines in the late 1990s gave birth to several parent advo-cacy groups, specifically, Generation Rescue, Moms Against Mercury, and Safe Minds. All of these groups believed that mercury had been removed from vaccines because the public health community believed not that it might cause harm, but rather that it had caused harm. These groups were particularly concerned that thimerosal in vaccines had caused autism.

Although parents’ concern that mercury in vaccines could cause autism was understand-able – especially given the manner in which it was removed – several toxicological and biolog-ical facts should have been reassuring. First, signs and symptoms of mercury poisoning are clearly distinct from those of autism. Second, ethylmercury is excreted from the body far more quickly than environmental mercury (methylmercury). Third, the quantities of mercury contained in breast milk and infant formula

(methylmercury). Third, the quantities of mercury contained in breast milk and infant formula likely to be ingested in the first 6 months of life were greater than the quantity of mercury contained in vaccines.

Epidemiological studies determining whether thimerosal in vaccines caused autism took advan-tage of several natural experiments. Western European nations had removed thimerosal from all vaccines by 1991. Also, some Canadian prov-inces used thimerosal-containing vaccines, whereas others used vaccines containing lesser quantities of thimerosal or no thimerosal. Inves-tigators working in Europe, Canada, and the United States showed that children who received thimerosal-containing vaccines were

Canada, and the United States showed that children who received thimerosal-containing vaccines were not more likely to develop autism spectrum disorder or even subtle signs of mercury poisoning than chil-dren who had received thimerosal-free vaccines or vaccines containing lesser quantities of thi-merosal. Scientists and public health officials are now comfortable that existing studies have refuted the concern that thimerosal in vaccines caused autism.

Thioridazine Definition Thioridazine is a prescription drug in the group of piperidine phenothiazines in the family of first-generation antipsychotics which has the chemi-cal formula C21H26N2S2·HCl. This drug was ini-tially FDA-approved for medical use in the year 1962. This compound has relatively low potency compared to the other first-generation antipsy-chotics, and its mechanism of action is thought to involve anticholinergic binding. This drug is FDA-approved for the treatment of

is thought to involve anticholinergic binding. This drug is FDA-approved for the treatment of schizophre-nia and can be used to treat aggression and pos-itive symptoms. Observed side effects include drowsiness/sedation, orthostatic hypotension, tachycardia, electrocardiogram (ECG) abnor-malities, cardiac arrhythmias, anticholinergic effects, sexual dysfunction, galactorrhea, weight gain, photosensitivity, rashes, and pigmentary retinopathy. Thioridazine has significant poten-tial adverse

rashes, and pigmentary retinopathy. Thioridazine has significant poten-tial adverse drug-drug interactions when coadministered with fluvoxamine, fluoxetine, paroxetine, sertraline, pindolol, propranolol, cis-apride, fluoroquinolone antibiotics, many other antipsychotics, and tricyclic antidepressants among other drugs.

Thiothixene Definition Thiothixene is a prescription drug in the group of thioxanthenes in the family of first-generation antipsychotics which has the chemical formula C23H29N3O2S2. This drug was initially FDA-approved for medical use in the year 1967. This drug is FDA-approved for the treatment of schizo-phrenia and can be used to treat borderline per-sonality disorder and schizotypal personality disorder. Observed side effects include drowsi-ness/sedation, insomnia/agitation, Parkinsonism,

disorder. Observed side effects include drowsi-ness/sedation, insomnia/agitation, Parkinsonism, akathisia, and weight gain.

Third Edition  Thorazine  Threat Detection  Threat Perception  Threat Superiority  Three-Word Phrases and Sentences  Thyrotropin, Thyroid-Stimulating Hormone (TSH)  Thyroxine (T)  Tics Definition Tics are the defining feature of Tourette syn-drome. Tics are typically rapid, jerky movements that may also involve vocalizations. Common tics include eye blinking, facial movements, head jerking, shoulder jerking, and abdominal tensing. Common vocal tics include throat clear-ing, grunting, coughing,

jerking, and abdominal tensing. Common vocal tics include throat clear-ing, grunting, coughing, hooting, and making various animal noises. Although tics are the defining feature of Tourette syndrome, tics may also occur in other conditions. Tic-like behaviors do occur in children with autism spectrum disorders.

TIME  Time Experience in Autism Spectrum Disorder Definition The term time experience has been used in phi-losophy and descriptive psychopathology to delineate both the explicit and implicit inner experience of time. Explicit time experience (or “macro layer”) entails those aspects of time which we are consciously aware of – or may become aware of – such as the different dimen-sions of time encompassing past, present, and future or feelings such as boredom and time pres-sure (Vogel et al.

encompassing past, present, and future or feelings such as boredom and time pres-sure (Vogel et al. 2018a). Implicit time experi-ence (or “micro layer”) describes the unconscious prerequisites for perception, think-ing, and behavior, usually with a focus on the continuity and future directionality of our sub-jective experience. Importantly, time experience as the experience of time passing by only mar-ginally relates to our time perception (e.g., the ability to explicitly judge time intervals

mar-ginally relates to our time perception (e.g., the ability to explicitly judge time intervals according to the clock or to generate time inter-vals via button press etc.) (Wearden 2015; Vogel et al. 2018a). With respect to psychopathology in general, time experience provides a holistic understanding of an individual syndrome in terms of a person’s inner experience (Stanghellini 2009, 2010). It has been speculated that the time experience of individuals with ASD differs from those without ASD

has been speculated that the time experience of individuals with ASD differs from those without ASD (Zukauskas et al. 2009; Hohwy et al. 2016; Vogel et al. 2018a, 2019a). The respective proposals state that the processes underlying implicit time experience take more time in individuals with ASD, due to a more detailed perception of their environment. This might affect the intrapersonal coordination of information processing and might cause inter-subjective asynchronies potentially impeding both

of information processing and might cause inter-subjective asynchronies potentially impeding both perceptual processing and complex behav-ior (Bloch et al. 2019). Persons with ASD may consequently experience continuous interrup-tions of their time caused by their environment. As a result, rituals and structured repetitive behavior are used to increase predictability, decrease future anxiety, and avoid interruption.

Historical Background Research on time experience has a long-standing tradition in philosophy and psychiatry. Its roots go back to the philosophical discipline of phenome-nology (Kupke 2009). Among the most promi-nent theories are the works of Edmund Husserl, Henri Bergson, and Martin Heidegger (Bergson 2001; Heidegger 2008; Husserl 2012). Their ideas were adopted by psychiatrists including Erwin Strauss, Ludwig Binswanger, Eugene Minkowski, and Viktor Emil von Gebsattel. This early

Erwin Strauss, Ludwig Binswanger, Eugene Minkowski, and Viktor Emil von Gebsattel. This early interdisciplinary approach has since inspired many other psychiatrists, psychologists, and phi-losophers alike. The subsequent research has largely focused on the phenomenological descrip-tion of mental disorders, such as major depression (von Gebsattel 1928, 1954; Straus 1928; Lewis 1932; Binswanger 1960; Minkowski 1933; Fuchs 2001, 2013; Kupke 2005; Wyllie 2005; Ratcliffe 2012; Stanghellini et al.

Minkowski 1933; Fuchs 2001, 2013; Kupke 2005; Wyllie 2005; Ratcliffe 2012; Stanghellini et al. 2017; Vogel et al. 2018b), mania (Minkowski 1923; Binswanger 1960; Moskalewicz and Schwartz 2018; Martin et al. 2019), and schizophrenia (Bouman and Grünbaum 1929; Lewis 1932; Minkowski 1933; Vogeley and Kupke 2006; Fuchs 2007a; Kupke 2009; Stanghellini et al. 2015; Moskalewicz 2018; Vogel et al. 2019b). Some studies were also dedicated to obsessive-compulsive disorder (von Gebsattel 1928, 1954),

Some studies were also dedicated to obsessive-compulsive disorder (von Gebsattel 1928, 1954), addictive behavior (von Gebsattel 1954; Moskalewicz 2016b), eating disorders, or personality disorders (Fuchs 2007b; Stanghellini and Mancini 2019). So far only very few studies have focused primarily on ASD (Zukauskas et al. 2009; Hohwy et al. 2016; Vogel et al. 2019b). However, an extensive and increasing body of research on time perception (e.g., the ability to explicitly judge time intervals

body of research on time perception (e.g., the ability to explicitly judge time intervals according to the clock or to generate time intervals via button press etc.) has yielded interesting results for ASD and in turn inspired research on time experience (for review see Allman and Meck 2011; Falter and Noreika 2014; Allman and Falter 2015; Casassus et al. 2019).

Current Knowledge “Lived Time” The concept underlying time experience as a whole is commonly referred to as “lived time” (Straus 1928; von Gebsattel 1928; Fuchs 2001, 2013; Broome 2005; Kupke 2005; Wyllie 2005; Gallagher 2012; Moskalewicz 2016a; Stanghellini et al. 2015). In simple terms, it supposes that human consciousness is not only dependent on time as a prerequisite to our basic existence but that it is the direction of time which provides goals and meaning: actions were prepared in the

but that it is the direction of time which provides goals and meaning: actions were prepared in the imme-diate or far away past and are being performed in the present in order to influence the near to distant future (Vogel et al. 2018a).

Time experience may be differentiated into an explicit, controlled, and conscious aspect and an implicit, automatic, and unconscious aspect. Importantly, this division is conceptual; it is much harder to draw clear and distinctive lines between the two concepts in the empirical domain (Vogel et al. 2018a). However, from a scholarly perspective, the division into such an implicit and an explicit time experience enables an orderly scientific approach to the otherwise elusive research topic of

time experience enables an orderly scientific approach to the otherwise elusive research topic of human time.

Time is not static, but dynamic. According to the theory of lived time, the essential constituent of its dynamicity is the directionality toward the future. This dynamic character has consequences for the experience of the present that may vary in its temporal extension depending on its relation-ship to the future (as determined by the past). For example, depending on a current situation and its demands, the “present” could refer to an hour, a particular day, or a life phase – or even all

its demands, the “present” could refer to an hour, a particular day, or a life phase – or even all three. We live our time from the past in the present into the future (Kupke 2009; Vogel et al. 2018a). In emphasis of its future directionality, lived time has also been called the “becoming” (“Werden”) (von Gebsattel 1954; Straus 1947; Minkowski 1933; Fuchs 2013; Vogel et al. 2018a, b) or “striving” (“Streben”) (Minkowski 1923, p. 220; Minkowski 1933).

Explicit Time Experience Explicit time experience (or “macro layer of time”) (for terminology see Fuchs 2005; Vogel et al. 2018a) entails the three dimensions of the structure of time: past, present, and future. Along these dimensions, we construct our individual autobiographical narratives and identities (Carr 1986; Stanghellini and Mancini 2017, p. 56 ff). Humans seemingly effortlessly locate themselves, their respective present, and their memories of the past on a virtual time line. Also,

themselves, their respective present, and their memories of the past on a virtual time line. Also, they devise plans and prospects for the future on that time line. For each individual these biographic events are inter-related and thereby provide each other with mean-ing and significance (Stanghellini 2017; Stanghellini and Mancini 2017, p. 57 ff). As long as the execution of the present aligns with our ideas about our past and future, we normally do not pay attention to time: explicit time

with our ideas about our past and future, we normally do not pay attention to time: explicit time blends with implicit time (Fuchs 2005; Vogel et al. 2018a). However, if our present activity in some way does not fit our narrative or is out of tune with our plans, we increasingly become aware of time (Vogel et al. 2018a).

The dynamic character can be illustrated by extreme cases of time pressure and boredom. Under time pressure, the available time is experi-enced as not sufficient to perform a particular action to reach a particular goal. As a conse-quence, the present appears to be passing too quickly to attain the said goal. If, however, we are bored, the present does not seem sufficiently (full)filled. It may seem meaningless or empty in light of our plans and wishes. In terms of lived time, this can be

may seem meaningless or empty in light of our plans and wishes. In terms of lived time, this can be understood as an inability to pursue a preferred activity or goal, and it explains why someone bored would prefer a different (more satisfying) activity (Fuchs 2005; Elpidorou 2018). This tension between present and future directionality causes time to be experienced as passing more slowly. Contrarily to both time pres-sure and boredom, we experience the so-called flow state when being completely

to both time pres-sure and boredom, we experience the so-called flow state when being completely immersed in lived time. During flow, external requirements and own abilities are optimally balanced (Csikszentmihályi 1990).

The explicit experience of time has been suggested as altered in a variety of psychiatric conditions (Straus 1928; von Gebsattel 1928; Lewis 1932; Fuchs 2001, 2013; Broome 2005; Kupke 2005; Wyllie 2005; Gallagher 2012; Moskalewicz 2016a; Stanghellini et al. 2015; Vogel et al. 2018a). For example, its disturbances are a frequently reported symptom of depressive disorders. It has repeatedly been proposed that in major depression the future directionality of time experience loses extension, and

proposed that in major depression the future directionality of time experience loses extension, and the personal future appears closed off. Depressed patients lose their inherent ability to influence the future in the present. The present is rendered meaning-less, the past unchangeably shameful, and the passage of time turns into a dragging and repeti-tious continuance of suffering. The emerging syn-drome of disturbed time experience in the case of depression has been referred to as “blocked

syn-drome of disturbed time experience in the case of depression has been referred to as “blocked future” (von Gebsattel 1928; Straus 1928; Fuchs 2001; Wyllie 2005; Stanghellini et al. 2017), “dis-turbance of (vital) becoming” (Straus 1928; von Gebsattel 1954; Minkowski 1933; Fuchs 2013), “disturbance of protention” (Binswanger 1960), or “disorder/disturbance of conation” (Stanghellini et al. 2017) (for review see Vogel et al. 2018a, b).

With regard to time experience, ASD stands out among psychiatric diagnoses as the conceptu-alization of ASD in the International Classifica-tion of Diseases (ICD) (World Health Organization. 1992), and the Diagnostic and Sta-tistical Manual of Mental Disorders (DSM) (American Psychiatric Association 2013) contains a distinctly temporal symptom: “restricted, repetitive patterns of behavior, inter-ests, or activities” (American Psychiatric Association 2013, p. 50). Temporal structure, repetitive

or activities” (American Psychiatric Association 2013, p. 50). Temporal structure, repetitive routine, difficulty or inability to sponta-neity, and insistence on sameness have recently been described in terms of time experience as part of an overarching syndrome. In a qualitative study consulting adults with high-functioning ASD about inner time experience, Vogel et al. (2019a) were able to describe symptom formation in terms of time experience. Building on earlier qualitative research

to describe symptom formation in terms of time experience. Building on earlier qualitative research (Zukauskas et al. 2009; Vogel et al. 2018a), the results indicate that routine was described as bringing about a pleasant fading out of the felt passage of time as an uninhibited immersion into lived time. Non-surprisingly, dis-ruptions of routine were experienced as unpleas-ant. Due to a felt unpredictability, individuals with ASD reported a particular fear and anxiety concerning the very close

individuals with ASD reported a particular fear and anxiety concerning the very close to near future. This fear seemed to inspire excessive planning and structuring of the future through further routine. As long as the plan succeeded, time experience followed the same rules in persons with and without ASD.

However, plans can be neither flawless nor rigidly adhered to in everyday life without a cer-tain ability to take into account unpredictability and surprise. Hence, the pleasant continuation of routine is usually interrupted at some point – espe-cially when it comes to particularly unpredictable and complex situations such as social interactions. These interruptions are an external cause of a fragmentation of time experience. This discontin-uation of the time line relates to the experience of

of time experience. This discontin-uation of the time line relates to the experience of past and future events that are seemingly factual and isolated from the present (Zukauskas et al. 2009; Vogel et al. 2019a). Prospectively overcom-ing and retrospectively making sense of these separate temporal entities seems to necessitate a considerable degree of effort. Hence it has been argued that the degree of cognitive functioning and overall resources attributable to planning and integrating of

degree of cognitive functioning and overall resources attributable to planning and integrating of temporal structure determines symptom severity and potentially also depressive comorbidity in ASD (Boucher 2001; Fein et al. 2013).

Implicit Time Experience Implicit time experience (or “micro layer of time”) (for terminology see Fuchs 2005; Vogel et al. 2018a) refers to the unconscious basis of experi-ence. Its most important foundations are continu-ity and the future directionality of this subpersonal, unconscious basis of conscious-ness/experience (Dainton 2006; Fuchs 2013; Wiese 2017). It is this fundamental continuity and directionality that makes possible the similar principles in explicit time experience (Vogel et

and directionality that makes possible the similar principles in explicit time experience (Vogel et al. 2018a). The same principles have recently found their way into neuroscientific concepts as the putative basic requirements of consciousness in the brain (Hohwy et al. 2016; Wiese 2017; Vogel et al. 2018a). A variety of psychological and neu-rophysiological processes have been proposed as underlying the supposed alterations in time per-ception and experience in ASD (e.g., genetic var-iances

the supposed alterations in time per-ception and experience in ASD (e.g., genetic var-iances (Wimpory et al. 2002; Nicholas, B. et al. 2007) or hormonal dysregulation (Tordjman et al. 2015)). Concerning the theory of interrupted time experience, examining its underlying implicit mechanisms requires the examination of the unconscious processes constituting the flow or stream of consciousness (Vogel et al. 2018a). As a starting point of inquiry, it has recently been suggested that predictive

et al. 2018a). As a starting point of inquiry, it has recently been suggested that predictive processing or Bayesian perceptual inference constitutes the passage of time (Hohwy et al. 2016; also see Vogel et al. 2018a). The major advantage of this line of rea-soning is that it elegantly combines both phenom-enological ideas grounded largely in the Husserlian analysis of time consciousness and trending neuroscientific theories (Hohwy et al. 2016; Wiese 2017).

Predictive processing in the brain assumes that the brain calculates its output (i.e., percep-tions and experience) through the combination of preconceived top-down inferences and bottom-up perceptual information (e.g., Friston et al. 2014). Put simply, at any point in time, the brain creates a hypothesis of what its next per-ceptual input will most likely be. This prediction is based on the previous input, i.e., earlier expe-rience and directly preceding percepts. This hypothesis is called a

input, i.e., earlier expe-rience and directly preceding percepts. This hypothesis is called a prior. The prior is com-pared to the actual perception. As long as perceptual input and prior match, the prior remains active and the output remains unchanged. If incoming information and prior do not match, a prediction error is calculated. In case of a prediction error, the neural system passes the error along a hierarchical organization of alternative potential priors in order to explain the error

along a hierarchical organization of alternative potential priors in order to explain the error (i.e., unexpected or unusual percept). This hierarchy ranges from lower priors reflecting simple, specific assumptions on the causes and contents of perception to higher priors reflecting general beliefs. The more “unex-pected” a new perceptual input, the higher the resulting prediction error will be, and the further it potentially will have to travel up the hierarchy until it has been explained away

the further it potentially will have to travel up the hierarchy until it has been explained away and resolved. The result from this calculation is called the pos-terior. The active prior is subsequently replaced by the posterior which thereby becomes the next percept’s better fitting prior. The transition from prior to new prior has been postulated to produce the experience of temporal flow (Hohwy et al. 2016).

Theorists on Bayesian processing in the brain have proposed so-called hypo-priors for ASD (Pellicano and Burr 2012; Hohwy et al. 2016), i.e., priors which prioritize more perceptual input and hence provide more perceptual detail. A brain with higher-detailed priors would need more time to process and extract relevant information, com-paratively slowing down processing speed and the internal flow of information (Hohwy et al. 2016). If the resultant speed of prior changes drops below the speed of

information (Hohwy et al. 2016). If the resultant speed of prior changes drops below the speed of changes in the external world, the external changes might appear as happening too fast (Gepner and Féron 2009; Hohwy et al. 2016). In other words, due to a more detailed perception, individuals with ASD may not be able to process information fast enough to keep up with their surroundings. The need to process new, fast incoming and especially unexpected, spontaneous information effectively

need to process new, fast incoming and especially unexpected, spontaneous information effectively interrupts the currently ongoing processing of information. Although the prior updating process does not directly reflect experienced speed of time, the divergence of internal and external temporal flow may become aware in changes in the explicit velocity of time (Fuchs 2005; Vogel et al. 2018a).

Interrupted Time Experience Complementarily to these qualitative descrip-tions and hypotheses, observations from experi-mental psychology can also be read as indications of an interrupted time experience in ASD. Wimpory et al. (2002) proposed a “Social Timing Hypothesis of Autism.” According to the hypothesis, persons with ASD cannot suffi-ciently synchronize with others on a behavioral level, due to suspected anomalies in clock genes (Nicholas et al. 2007). Boucher et al. (2007) studied

due to suspected anomalies in clock genes (Nicholas et al. 2007). Boucher et al. (2007) studied children with ASD and found impairment in diachronic thinking. Diachronic thought (Montangero 1992) entails the ability to imagine past or future stages of a present situation, object permanence, and the ability to infer a process from successive events and vice versa. In other words, children with ASD may have a differing concept of temporal continuity or a delayed development thereof. Concerning

may have a differing concept of temporal continuity or a delayed development thereof. Concerning the passage of time and events, an environment changing too fast due to aberrant connectivity and neuronal synchronization has been discussed as constitut-ing ASD (Gepner and Féron 2009). Atypicalities in intrapersonal synchrony have been speculated to cause interpersonal asynchronies in ASD (Bloch et al. 2019). Although it still remains unclear, whether these and other variations in ASD are due to

al. 2019). Although it still remains unclear, whether these and other variations in ASD are due to distinct impairments in time perception, they have been suggested to produce difficulties in interpersonal and communicative coordination (for review see Allman and Meck 2011; Falter and Noreika 2014; Allman and Fal-ter 2015; Casassus et al. 2019). In accordance with interrupted time experience, stereotyped behavior may serve as a compensatory mecha-nism for these deficits (Allman et al. 2011).

The integrated analysis of time and temporality in ASD understands patients’ symptoms and indi-vidual syndromes as a meaningful whole (Stanghellini 2009, 2010) which emerges from a distinct experience of time. Repeat interruptions by an environment that is too fast or too unpredictable cause subjective difficulties depending on the availability of cognitive resources. Due to their innate complexity and relatively high spontaneity, we may assume that communicative situations are especially

and relatively high spontaneity, we may assume that communicative situations are especially difficult. Symptoms such as repetitions, routine, insistence on sameness, and intensified focus (American Psychiatric Association 2013, p.50) can be interpreted as compensatory mechanisms to reestablish or guarantee undisturbed time experience.

Future Directions Interrupted time experience in ASD remains a hypothesis primarily derived from qualitative exploration. As with other findings on time and ASD, the reliability and specificity of the theory remain uncertain (see Falter and Noreika 2014 for discussion; and Casassus et al. 2019 for review). However, it holds tremendous potential for further investigation of time experience in ASD. In its explorative and observational char-acter and the need to contextualize and under-stand the

In its explorative and observational char-acter and the need to contextualize and under-stand the inner lived experience of persons with ASD, interrupted time experience can become informative for research on the putative under-pinnings of human perception and experience in ASD, and beyond.

A potential neural target for research on time experience both generally and in ASD is the so-called default mode of the brain. The default mode (or resting state) is the brain’s activity mea-surable while the brain is not engaged in any specific task (Raichle et al. 2001; Northoff 2016a). Changes in the temporospatial activity of the default mode have recently been put for-ward as being related to psychopathological phe-nomena of time experience (Northoff 2016a, b; Northoff and Stanghellini

to psychopathological phe-nomena of time experience (Northoff 2016a, b; Northoff and Stanghellini 2016). Should the con-cept prove true, alterations in the brain’s resting state as repeatedly described in ASD (e.g., Weng et al. 2010; Anderson et al. 2011; Joshi et al. 2017) could be used to explain altered time experience.

Future research should further attempt an operationalization of interrupted time experience as a descriptive syndrome. Further conceptualiza-tion and the inclusion into a standardized diagnos-tic protocol allows for testing of the experiential hypothesis. If such a descriptive approach suc-ceeds in clinical practice, it would inform and specify diagnostic procedure, foster our understanding of persons with ASD, and help identify, therapeutically employ, and improve strengths and resources.

Vogel et al. (2019a) have provided a table describing a potential syndromic description of interrupted time experience. We have amended the table with explorative ques-tions designed to approach, identify, and poten-tially understand the time experience of a patient with suspected ASD in a diagnostic interview. Of course these questions are preliminary, are diffi-cult to understand, have never been used system-atically, and will need further study before being able to be more widely used in

been used system-atically, and will need further study before being able to be more widely used in clinical practice. Additionally quantifying psychometric scales need to be developed both to facilitate standard-ized clinical application and a broader use in sci-entific research.

| Experience | Definition | Suggestions for related questions | |:---|:---|:---| | The faded out passage of time | The passage of time is hardly or vaguely felt. A bad sense of time. Fading is usually amplified by structured and routine activity | “Do you have a good or a bad sense of time?”; “How do you keep track of time?”; “What makes you forget about time?” |

| The present as confined activity | The present consists of one distinct activity, usually deemed important, necessary, or meaningful. Routine is experienced as beneficial. Interruptions are experienced as distressing | “What does ‘the present’ mean to you?”; “How does routine/repetition influence your experience of the present?”; “Is the present a point in time, or is it extended?” |

| The past as isolated memories | The past is described as a repetition of facts. Although meaningful and influential, the past is not necessarily part of the lived present | “What do your past experiences (or a specific memory) mean to you?”; “Do your past experiences influence your decisions? If yes, how?” |

| The planned future | The future is experienced as uncertain and frightening. The future is rigorously planned to avoid unexpected interruption | “What does the future mean to you?”; “Are you afraid of the future/the unexpected?”; “Do you distinguish between a near and a far-away future?” “Do you feel that it is possible to plan for the future?”; “Do you spend much time/effort on planning? Describe to me, how you would plan your day?”; “Why do you make plans?” |

Time Interval  Time Management Definition Time management is the process through which a person plans for, initiates, and completes one or more activities consistent with a predetermined sequence and/or schedule. Time management is important for many everyday activities, such as getting ready for school or work, completing responsibilities on time, arranging priorities, etc. For individuals with autism spectrum disor-ders (ASDs), the time management process can be very challenging to complete

autism spectrum disor-ders (ASDs), the time management process can be very challenging to complete independently. Some individuals with ASDs may need explicit teaching with initial or ongoing support to manage their time effectively.

To help address time management issues, researchers and practitioners have used a variety of supports. Visual supports may be used to help arrange several activities into a logical order. Once arranged, visual supports then show a par-ticular sequence to be followed (e.g., activity schedules; McClannahan and Krantz 2010). While visual support can be used to help a person with an ASD complete a routine without assis-tance from another person, this does not mean he or she is independently

a routine without assis-tance from another person, this does not mean he or she is independently completing the entire time management process.

Learning to manage one’s time requires con-sideration of a wide variety of variables, such as relevant activities, time frames, and resources. Interventions designed to improve time manage-ment may need to address each of these areas if the person is to learn to manage their time indepen-dently. For individuals who have not yet mastered time management, visual supports, such as activ-ity schedules, may be particularly effective in increasing independent completion of even complex routines with

may be particularly effective in increasing independent completion of even complex routines with little or no intervention from care givers during the activities.

Time Sampling Procedures  Time Trends in Diagnosis Definition Autism is one of several pervasive developmental disorders (PDDs) characterized by atypical devel-opment in socialization, communication, and behavior. Symptoms of autism and related condi-tions are typically present before age 3 years and often are accompanied by unusual patterns in cognitive functioning, learning, attention, and sensory processing. In the past decade, the condi-tions of autistic disorder, Asperger’s disorder, and

processing. In the past decade, the condi-tions of autistic disorder, Asperger’s disorder, and pervasive developmental disorder – not otherwise specified – have been referred to as the “autism spectrum disorders” (ASDs). ASDs are defined by a pattern of development which emerges in the first few years of life, and there is currently no biologic test to confirm the diagnosis. Therefore, these developmental disabilities are typically diagnosed by professionals who have an advanced degree and training

disabilities are typically diagnosed by professionals who have an advanced degree and training in the evaluation of developmental status, such as physicians and psychologists. Determining that a child’s developmental profile is consistent with one of the ASDs requires consideration of the way the child communicates, interacts, behaves, learns, and plays and is guided by diagnostic criteria. Since autism was first described about 70 years ago, these criteria have changed.

Historical Background Autism was first described in 1943 by psychia-trist Leo Kanner working at Johns Hopkins Uni-versity (Kanner 1943). Dr. Kanner described 11 children referred to him because of unusual development. He noted common patterns among the children’s behavior including “extreme autism, obsessiveness, stereotypy, and echola-lia.” He also noted similarities to children with schizophrenia but offered that autism was unique in the “extreme aloneness” and lack of social contact with

but offered that autism was unique in the “extreme aloneness” and lack of social contact with “intelligent relation to objects” from very early in life. Also in the 1940s, Dr. Hans Asperger of Austria was also describing a group of children he saw clinically who had significant social impairments but more typical language content than the children described by Kanner. They were not aware of each other’s work, but both used the term “autism” to describe a unique group of children. Although there

work, but both used the term “autism” to describe a unique group of children. Although there are reports of socially isolated individuals with unusual behaviors throughout history, these efforts were the first to describe the developmen-tal pattern as a specific psychiatric condition (Rutter and Schopler 1987).

Kanner’s description (1943; Eisenberg and Kanner 1956) of autism provided the dominant guidance for describing the features of autism until the 1970s. Although Kanner noted that autism had a unique profile different from schizo-phrenia, autism was classified as a form of early-onset schizophrenia (Creak et al. 1964) in the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) (American Psychi-atric Association [APA] 1952, 1968). The DSM is the standard for clinical diagnosis

Psychi-atric Association [APA] 1952, 1968). The DSM is the standard for clinical diagnosis of psychiatric disorders which impacts the way in which professionals identify and label these conditions. The DSM is periodically revised. During the 1970s, there was a shift to distinguish autism from childhood schizophrenia with the recognition that the latter usually involves a period of typical functioning with the later emer-gence of unusual thoughts and behaviors and a loss of contact with reality.

with the later emer-gence of unusual thoughts and behaviors and a loss of contact with reality. Criteria for autism by Rutter (1978) and Ritvo and Freeman (1978) emphasized the early onset of autism in the first three years of life and the differences and overlap between autism and mental retardation. Around the same time, Lorna Wing translated Asperger’s earlier descriptions of more verbal children with autism into English. She also described social, communication, and behavioral features as

with autism into English. She also described social, communication, and behavioral features as the core of autism but noted that there is a continuum of social functioning indicated by three groups: “aloof,” “passive,” and “active but odd” (Wing and Gould 1979).

The DSM-III (APA 1980) distinguished autism as one of the “pervasive developmental disorders” and severed the connection to schizophrenia. Autism was now classified as one of several related developmental disorders where the typical social and language skills and behaviors do not occur as expected from very early in life. The next edition, DSM III-R (APA 1987), revised the spe-cific criteria which make up the social, communication, and behavioral symptoms of autism and the lowest threshold

which make up the social, communication, and behavioral symptoms of autism and the lowest threshold diagnosis of PDD-NOS. More significant changes were made with the DSM-IV (APA 1994) and the subsequent text revision (APA 2000) which mir-rored the broadening of conditions included as a PDD for the International Classification of Dis-eases, tenth edition (ICD-10) (WHO 1992). Starting in the early 1990s, Asperger’s disorder was included for the first time as a PDD. Since the publication of the

1990s, Asperger’s disorder was included for the first time as a PDD. Since the publication of the ICD-10 and DSM IVand IVTR criteria for the PDDs in the early 1990s, a great deal has changed in the identification and con-ceptualization of autism and related disorders. As noted earlier, three of the conditions are now referred to as the ASDs to reflect the “spectrum” of deficits and skills across multiple domains which share core social, communication, and behavioral features present during the first

domains which share core social, communication, and behavioral features present during the first 3 years of life. However, within this spectrum, individual features and functioning across domains may vary from mildly to severely affected. In addition, there is a recognition that ASDs can co-occur across the whole range of intellectual functioning and with other develop-mental and medical conditions.

Current Knowledge In the past 20 years, there have been increases in the numbers of people identified with an ASD compared to the past. This has sparked debate about how much of the increases in the preva-lence of ASDs are explained either by changes in identification patterns and, therefore, an artifact of changing diagnostic criteria and awareness or by a true increase in symptoms among children born in more recent times. One issue to examine is whether the changing diagnostic criteria for the

born in more recent times. One issue to examine is whether the changing diagnostic criteria for the ASDs have influenced estimates of the preva-lence of ASDs over time. The first epidemiologic studies of autism prevalence in the population were done by Lotter in the UK (1966, 1967) and were based on Kanner’s criteria. Since that time, many studies based on each of the major diagnostic criteria have estimated the prevalence of ASDs. From the 1940s until the 1980s, autism primarily referred to more

estimated the prevalence of ASDs. From the 1940s until the 1980s, autism primarily referred to more severely affected individuals with autistic disorder and was thought to be rare, affecting approximately one in every 2,000 (0.05%) children (Fombonne 2009; Rutter 2005). Several studies using ICD-10 and DSM-IV have been done in industrialized countries identifying not only autism but the wider spectrum with surprising consistency indi-cating a best estimate of combined ASD preva-lence at 6 or 7

with surprising consistency indi-cating a best estimate of combined ASD preva-lence at 6 or 7 of every 1,000 (0.6–0.7%) children with ASDs (CDC 2007; Fombonne 2009). These estimates are more than 10 times higher than estimates using earlier criteria. However, some of the most recent population-based studies have documented even higher ASD prevalence esti-mates of >1% (Baird et al. 2006; Baron-Cohen et al. 2009; CDC 2009; Honda et al. 2005; Kadesjo et al. 1999; Kogan et al. 2009) and even as

et al. 2009; CDC 2009; Honda et al. 2005; Kadesjo et al. 1999; Kogan et al. 2009) and even as high as 2.6% (Kim et al. 2011; Roelfsema et al. 2012) among children in areas of Asia, Europe, and North America. Can the difference of 1 in 2,000 children to about 1 in 100 be accounted for by the shift from seeing autism as a severe, rare disorder to the broader spectrum? One effort to retrospectively apply more modern criteria to an older study estimated a prevalence of about 4 per 1,000 children,

apply more modern criteria to an older study estimated a prevalence of about 4 per 1,000 children, indicating that older studies underestimated prevalence as they considered a more strict interpretation of autism (Heussler et al. 2001). Although earlier studies likely underestimated ASD prevalence by today’s standards, there are many other factors to take into account when sorting out time trends in ASD identification. For example, the age of onset required for diagnosis has changed over time

in ASD identification. For example, the age of onset required for diagnosis has changed over time and can influence ASD prevalence estimates. In addition, there are multiple identification and risk factors which could also influ-ence the identification and/or development of an ASD.

Few studies have tracked the same population over time to evaluate ASD prevalence changes. The Autism and Developmental Disabilities Mon-itoring (ADDM) Network [established by the Centers for Disease Control and Prevention (CDC) in 2007 to characterize and track the prev-alence of ASDs among children in multiple areas of the United States] reported an overall 57% increase in identified ASD prevalence among 8-year-old children over a 4-year period from 2002 to 2006 (Centers for Disease Control

among 8-year-old children over a 4-year period from 2002 to 2006 (Centers for Disease Control and Prevention [CDC] 2009). On average, ASD prev-alence increased across all sex, racial/ethnic, and cognitive functioning subgroups. Although some of the changes in ASD prevalence could be attrib-uted to improved identification in the areas stud-ied, particularly of some subgroups such as Hispanic children and children without intellec-tual disabilities, these patterns were not consis-tent among sites

and children without intellec-tual disabilities, these patterns were not consis-tent among sites and cannot completely explain a greater than 50% prevalence increase in such a short time period. These findings, in addition to trends across multiple single studies, raise ques-tions about what other identification and poten-tial risk factors in addition to changes in diagnostic criteria are influencing increasing prevalence estimates of ASDs. At this point, it is clear that shifts in the diagnostic

increasing prevalence estimates of ASDs. At this point, it is clear that shifts in the diagnostic criteria for ASDs have had an impact on the identified prevalence, but no single factor explains the changes identified in ASD prevalence over time, and much needs to be done to understand the relative contribution of the multiple factors involved.

*   Kanner Criteria (1943)     *   Inability to relate to people; language does not convey meaning; food refusal; fear of noises; limited but good relations with objects; present from the beginning of life
*   Eisenberg and Kanner (1956)     *   Extreme self-isolation (lack of affective con-tact) and extreme repetitive and ritualistic behavior (perseveration of sameness) DSM-I (1952) and DSM-II (1968)

*   Part of schizophrenia, childhood type manifested by autistic, atypical, and withdrawn behavior; unevenness, immaturity, or inade-quacy of development

*   Creak et al. (1964)     *   Schizophrenic syndrome in childhood including gross and sustained impairment of emotional relationships with people, lack of self-awareness, preoccupation with objects, resistance to change, abnormal perceptual and sensory issues, excessive anxiety, delayed lan-guage, unusual activity levels, unusual intel-lectual skills

*   Rutter Criteria (1978)     *   Emphasized social and language development delayed and unusual for the child’s intellectual ability; insistence on sameness, abnormal pre-occupations, or resistance to change; onset before 30 months
*   DSM-III (1980)     *   Differentiated autism from schizophrenia (not a psychiatric disorder, but developmental)
    *   Concept of “PDD” introduced: infantile autism; childhood-onset PDD; atypical PDD

*   Concept of “PDD” introduced: infantile autism; childhood-onset PDD; atypical PDD
    *   Autism: Pervasive lack of responsiveness to other people (autism); gross deficits in lan-guage development or peculiar speech pat-terns; bizarre responses to the environment; onset before 30 months

*   Childhood-onset PDD: gross and sustained impairment in social relationships with at least three of the following: excessive anxiety, inappropriate affect, resistance to change, movement oddities, abnormalities of speech, sensory issues, self-injury; onset between 30 months and 12 years

*   DSM-III-R (1987) *   Concept of PDD continued: autism and PDD-NOS     *   Autism: has eight criteria indicating qualita-tive impairment in reciprocal social interac-tion, in verbal and nonverbal communication and in imaginative activity, and in markedly restricted repertoire of activities and interests; onset during infancy or early childhood

*   PDD-NOS: qualitative impairment in the development of reciprocal social interaction and of verbal and nonverbal communication skills; may have a markedly restricted reper-toire of activities and interests
*   DSM-IV (1994) and DSM-IV TR (2000) *   Similar to ICD-10 (1992)     *   Expanded PDD concept: autistic disorder; Asperger syndrome; Rett syndrome; CDD; PDD-NOS

*   Autism: has six criteria indicating qualitative impairment in social interaction and commu-nication, and restricted, repetitive, and stereo-typed patterns of behavior; onset prior to 36 months

*   PDD-NOS: Severe and pervasive impairment in the development of reciprocal social inter-action or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present; includes “atypical autism” presentations that do not meet the criteria for autistic disorder because of late age at onset, atypical symptomatology, or sub-threshold symptomatology, or all of these

*   DSM 5 (estimated 2013)     *   Proposes to collapse PDD subtypes into a sin-gle category of “autism spectrum disorders”
    *   Proposed ASD: persistent deficits in social communication and social interaction across contexts not accounted for by general develop-mental delays; restricted, repetitive patterns of behavior, interests, or activities; present in early childhood; symptoms limit and impair everyday functioning

*   http://www.dsm5.org  Future Directions Despite the fact that ASD prevalence estimates based on the DSM-IVTR criteria continue to increase, there will be another revision of the diag-nostic criteria for autism and related conditions with the upcoming publication of the fifth edition of the DSM (http://www.dsm5.org) anticipated for 2013. The current proposed criteria collapse several of the PDD subtypes into one category of autism spectrum disorders. As it stands now, there is greater focus on

into one category of autism spectrum disorders. As it stands now, there is greater focus on distinguishing core social commu-nication and interaction and repetitive behaviors, interests, and activity symptoms of ASDs in the context of language level, cognitive functioning, and other indicators of functioning. In the clinical and research fields, there is a move away from the categorical identification of autism as being present or not present with the recognition that some of the core domains

of autism as being present or not present with the recognition that some of the core domains associated with ASDs are distributed in a more continuous way in the population (Constantino 2011). There is also increasing inter-est improving the utility of diagnoses to inform everyday supports and services for people with ASDs. This includes incorporating information on developmental changes and better understanding impact of ASD characteristics on daily functioning (Happe 2011; Lord 2011). The

understanding impact of ASD characteristics on daily functioning (Happe 2011; Lord 2011). The significance of the upcoming revised diagnostic criteria for the ASDs remains to be seen, but impact on identified preva-lence of ASDs is highly likely (Mattila et al. 2011).

Time-Out Definition Time-out is a procedure that involves removing an individual from positive reinforcement. It is typi-cally employed as a punishment technique. Often, it involves removing an individual from a partic-ular setting in which they displayed inappropriate behaviors and placing the individual in a non-reinforcing setting, such as a chair in the corner, their bed/crib, and outside the classroom. Time-out also may include removal of items or materials that are reinforcing. The term

classroom. Time-out also may include removal of items or materials that are reinforcing. The term “time-out” was first coined by Arthur Staats in the late 1950s as an effective procedure he used with his typically developing children to decrease their disruptive behaviors, such as crying (Staats 1971). Montrose Wolf and others (e.g., Allen et al. 1964) used the procedure more systematically as a behavior man-agement technique in which individuals are removed from positive reinforcement. While

behavior man-agement technique in which individuals are removed from positive reinforcement. While this technique is generally effective with typically developing children, it may serve as a (negative) reinforcer for children with autism, who may find some of the demands of social interaction aversive and time alone rewarding (Solnick et al. 1977). Specifically, social isolation may not be aversive to a child with autism; thus, time-out may be rewarding to the child. Time-out is often used in

to a child with autism; thus, time-out may be rewarding to the child. Time-out is often used in place of physical punishment but is most effective when used with other procedures, such as extinc-tion, teaching appropriate replacement behaviors, and differential reinforcement of appropriate behaviors.

Time-Out from Positive Reinforcement  Timothy Syndrome Short Description or Definition Timothy syndrome (TiS) is a rare multisystem developmental disorder caused by a single de novo mutation in the CaV1.2 L-type calcium channel gene CACNA1C. TiS is characterized by physical malformations, cardiac defects, and autism. Individuals with TiS exhibit dysmorphic facial features such as rounded faces, flat nasal bridges, baldness, and abnormal dental anatomy. Patients also possess webbing of toes and

flat nasal bridges, baldness, and abnormal dental anatomy. Patients also possess webbing of toes and fingers (syndactyly). Cardiac deficits of TiS include a severe prolongation of the QT interval (electrocardiographic indication of prolonged heartbeat), significant arrhythmia, and congenital heart disease. Developmental delays associated with TiS include language, motor, and cognitive impairments. Language is affected in the domains of articulation, reception, and expres-sion. Cognitive features

Language is affected in the domains of articulation, reception, and expres-sion. Cognitive features include impairment in communication, socialization, daily living skills, as well as intellectual disability. Individuals with TiS meet the criteria for autism spectrum disorder.

Categorization Phenotypic concurrence of cardiac arrhythmia, long QT, and syndactyly (webbing of fingers and toes) are indicative of TiS (Marks et al. 1995); DNA sequence analysis is used to confirm TiS (Frohler et al. 2014). Depending on the point muta-tion in either the mutually exclusive exon 8 or exon 8A, TiS diagnoses are categorized into two sub-types: TS1 (G406R in exon 8A) and TS2 (G406R or G402S in exon 8). The exon 8A-containing variant of CaV1.2 mRNA is primarily expressed during

or G402S in exon 8). The exon 8A-containing variant of CaV1.2 mRNA is primarily expressed during development and at lower levels (~20%) than the dominant exon 8 (Panagiotakos et al. 2019). A glycine to arginine substitution at residue 406 (G406R) in the alternative splicing variant of exon 8A of the CACNA1C gene encoding CaV1.2 calcium channel confirms typical Timothy Syn-drome variant 1 (TS1) (Splawski et al. 2004). The atypical Timothy Syndrome variant 2 (TS2), a more severe form of TiS,

(Splawski et al. 2004). The atypical Timothy Syndrome variant 2 (TS2), a more severe form of TiS, results from the G406R mutation occurring in the more highly and persis-tently expressed exon 8 (Panagiotakos et al. 2019). Patients with atypical TiS do not present with syn-dactyly (Splawski et al. 2005), a particular pheno-typic distinction from TS1. Additionally, TS2 can arise from two mutations of CaV1.2, in exon 8: G406R and G402S. The G406R mutation in atyp-ical TS2 leads to many of the same

CaV1.2, in exon 8: G406R and G402S. The G406R mutation in atyp-ical TS2 leads to many of the same cardiac and neurological phenotypes as classic TS1, including diagnosable ASD-associated behaviors. Patients with atypical TS2 from a G402S mutation also possess significant cardiac symptoms, including QT interval elongation as well as some neurologi-cal symptoms. Though TS2 patients with the G402S mutation possess degrees of intellectual disability and some developmental delay (Diep and Seaver

mutation possess degrees of intellectual disability and some developmental delay (Diep and Seaver 2015; Hiippala et al. 2015; Splawski et al. 2005), these patients do not present with cognitive deficits associated specifically with Autism Spectrum Disorder (ASD), an important distinction from the G406R variant of TS2 (Hiippala et al. 2015; Splawski et al. 2005). There have also been singular cases of patients presenting with TiS who exhibited mutations in CACNA1C gene but not within exon 8/8A

of patients presenting with TiS who exhibited mutations in CACNA1C gene but not within exon 8/8A (Boczek et al. 2015; Landstrom et al. 2016).

Epidemiology TiS results from de novo mutations and is extremely rare (Splawski et al. 2004). Inheritance patterns of TiS are sporadic; parents of affected children typically do not have TiS (Marks et al. 1995; Splawski et al. 2004). However, genetic mosaicism, in which a two or more cell populations in an individual express different genotypes, can lead to inheritance of the mutation in offspring (Gao et al. 2013; Splawski et al. 2004, 2005).

Natural History, Prognostic Factors, and Outcomes Timothy Syndrome was initially identified in the early 1990s as a novel cardiac arrhythmia that presented with webbing of fingers and toes (syndactyly) and described as a unique form of heart-hand syndrome (HHS). TiS was first identified in Germany by Dr. Reichenbach who recorded a significantly elongated QT-interval and syndactyly in a new born. Long QT-interval and synostoses of the carpus in the father suggested a significant genetic component to

QT-interval and synostoses of the carpus in the father suggested a significant genetic component to this syndrome (Reichenbach et al. 1992). Shortly after, Dr. Mark Keating reported several case studies of infants possessing the same phenotypic associ-ation of cardiac arrhythmia and syndactyly. The three children were hypothesized to have the same novel form of long QT-syndrome and were at high risk of sudden death. The patients also possessed other congenital cardiac malformations, but only

risk of sudden death. The patients also possessed other congenital cardiac malformations, but only long QT-interval and syndactyly were consistent across individuals. Dr. Keating and colleagues hypothesized a genetic mechanism for this disease (Marks et al. 1995). The syndrome was named Timothy Syndrome after Katherine Timothy, a nurse at the University of Utah who originally identified this phenotype across different infants.

As medical treatment of TiS improved and extended the lives of patients, it became clear that TiS was a major multisystem disorder affect-ing the heart, skin, eyes, teeth, immune system, and brain (Splawski et al. 2004).

Cardiac abnormalities in TiS are severe and are associated with sudden death (Marks et al. 1995). All children with TiS possess elongated QT inter-vals and arrhythmias, with 70% of patients experiencing a life-threatening arrhythmic epi-sode. Arrhythmia in TiS can occur as ventricular tachycardia or bradycardia from atrioventricular block (AV block). TiS mutations also result in hypertrophic cardiomyopathy and ventricular systolic dysfunction (Lo et al. 2005). Patients with TiS also possess

and ventricular systolic dysfunction (Lo et al. 2005). Patients with TiS also possess congenital heart disease including patent ductus arteriosus (60%), patent foramen ovale (30%), ventricular septal defects (20%), tetralogy of Fallot (6%), and cardiomegaly (35%). Because of the severe cardiac arrhythmia in TiS, many children with TiS die early in infancy and childhood. The average age of death in children with TiS is 2.5–3 years (Splawski et al. 2004).

Children with TiS experience a number of medical difficulties in addition to heart abnormalities. Skin and facial abnormalities are the early phenotypic features of TiS. All children with TiS have syndactyly of the fingers and occasionally toes, as well as baldness at birth. Many children with TiS will have other facial and skin features. Identifiable facial dysmorphia includes rounded faces, flat nasal bridges, thin upper lips, and receding upper jaws. Dentition development of children with TiS

nasal bridges, thin upper lips, and receding upper jaws. Dentition development of children with TiS is abnormal, characterized by small teeth with soft, poorly formed enamel (Papineau and Wilson 2014; Splawski et al. 2004). Other facial difficulties in TiS patients include nearsightedness (25%) and sinusitis (30%). Children with TiS are likely to present with pulmonary complications such as pneumonia, bronchitis, and pulmonary hyper-tension, as well as gastrointestinal difficulties. Episodic

bronchitis, and pulmonary hyper-tension, as well as gastrointestinal difficulties. Episodic hypocalcemia and hypoglycemia are present in about 33% of patients. Surviving children exhibit significant development delays in language and motor skills, along with various general cognitive impairments. Nearly 60–80% of surviving patients with the G406R TiS mutation meet the criteria for autism spectrum disorder while patients with the G402S mutation exhibit intellectual disability and developmental

disorder while patients with the G402S mutation exhibit intellectual disability and developmental delay without autism (see section “Evaluation and Differential Diagnosis”). Seizures are experienced by 21% of patients with TiS.

Clinical Expression and Pathophysiology of Timothy Syndrome Intellectual disability occurs in about 25% of individuals with TiS, though a number of other cognitive impairments are also present. All adaptive functioning is impaired in TiS. Commu-nication is significantly affected and language delay manifests early in development. Many children with TiS do not babble during infancy. Other language skills that are affected in TiS include articulation, reception, and expression. Other areas of

skills that are affected in TiS include articulation, reception, and expression. Other areas of adaptive functioning such as socialization, personal care, and daily living skills are impaired. The association between TiS and ASD is very high. Between 60% and 80% of patients with either TS1 or TS2 G406R mutations that survive the significant cardiac defects are diagnosed with ASD (Splawski et al. 2004). TiS is a syndromic autism spectrum disorder, an ASD with known genetic etiology that occurs in

TiS is a syndromic autism spectrum disorder, an ASD with known genetic etiology that occurs in conjunction other specific phenotypes (Sztainberg and Zoghbi 2016).

TiS has attracted research interest because it arises from a known single amino acid mutation in a prominent signaling protein (CaV1.2) that generates ASD with high likelihood. Consistent with other lines of evidence for an important role of calcium channels in ASD (Lu et al. 2012), TiS provides a unique opportunity for pinpointing and dissecting mechanisms potentially involved in ASD. Building on the known genetics associated with TiS, investigations of altered neurological mechanisms have

on the known genetics associated with TiS, investigations of altered neurological mechanisms have yielded valuable knowledge regarding activity-dependent neuronal signaling. Studies of TiS-associated mutations in animal models and induced pluripotent stem cells (iPSCs) have revealed important details about altered pathophysiological mechanisms underly-ing the disease (Bader et al. 2011; Bett et al. 2012; Krey et al. 2013). Both the G406R and G402S mutations result in excess calcium influx via

al. 2012; Krey et al. 2013). Both the G406R and G402S mutations result in excess calcium influx via the CaV1.2 channel upon neuronal depolarization (Splawski et al. 2005). This excess calcium influx is the result of altered channel inactivation (Barrett and Tsien 2008). Both mutations results in alterations in voltage-dependent activation. The G406R mutation exhibits a potentiating leftward 10 mV shift in the voltage-dependent activation of CaV1.2 (Splawski et al. 2005) while the G402S mutation

shift in the voltage-dependent activation of CaV1.2 (Splawski et al. 2005) while the G402S mutation exhibits a rightward shift. Additionally, the G406R mutation has be shown to exhibit abnormal voltage-dependent conformational signaling (Li et al. 2016). Neurons expressing the G406R TiS mutation show excessive activation of activity-dependent genes specifically after increases in neuronal activity (Li et al. 2016). Both the G402S and G406R mutation confers defects in calcium-dependent

activity (Li et al. 2016). Both the G402S and G406R mutation confers defects in calcium-dependent inactivation and contributes to arrhythmogenesis (Dick et al. 2016). Furthermore, developmental studies have identified excessive activity-dependent retraction of dendrites (Krey et al. 2013) both of which are not associated with the increased calcium influx of CaV1.2 with a TiS mutation (Krey et al. 2013; Li et al. 2016), as well as aberrant migration and neurite formation during development in TiS

Li et al. 2016), as well as aberrant migration and neurite formation during development in TiS animal models (Kamijo et al. 2018) and cultured human brain organoids (Birey et al. 2017). Genetic investigations in both human and animal models of TiS have revealed effects of the TS1 mutation on the alternative mRNA splicing of exon 8 and exon 8A (Panagiotakos et al. 2019). In addition to alterations in the electrophysiolog-ical functions of CaV1.2, the TS1 mutation confers altered exon 8A

in the electrophysiolog-ical functions of CaV1.2, the TS1 mutation confers altered exon 8A expression that results in continuous post-developmental expression of the pathological channel (Panagiotakos et al. 2019). Glial development and function are also affected by the TiS mutation. Myelinating oligo-dendrocytes possess increased calcium influx, mature at faster rates, and exhibit increased myelination during postnatal development. Ani-mal models of TiS display readily discernable

myelination during postnatal development. Ani-mal models of TiS display readily discernable ASD-associated behaviors such as reduced social-ization and increases in repetitive and persevera-tive behavior. The findings from these behavioral and mechanistic studies have important implica-tions for broader questions about the underlying pathophysiological mechanisms in ASD (Bader et al. 2011; Mullins et al. 2016; Sztainberg and Zoghbi 2016).

Evaluation and Differential Diagnosis Though TiS is characterized by many neurologi-cal and developmental features, it is typically suggested by the presence of cardiac QT elongation accompanied by syndactyly and other facial deformities (Marks et al. 1995). Diagnosis can be suspect in a child before birth if fetal heart rates are found to be bradycardic. After birth, children with TiS can develop sudden hypoxia and present with cyanosis, a bluish discoloration of the skin. Subsequent cardiac

sudden hypoxia and present with cyanosis, a bluish discoloration of the skin. Subsequent cardiac evaluation of infants with TiS reveals 2:1 AV block as well as prolonged QT interval. However, there are forms of TiS where patients do not exhibit syndactyly. In order to properly diagnose TiS, single-strand con-formational polymorphism sequence analysis or DNA sequencing of the CACNA1C gene is uti-lized (Splawski et al. 2004). It is important to identify TiS-associated mutations in the various

(Splawski et al. 2004). It is important to identify TiS-associated mutations in the various exons of CACNA1C, as many of them are exclu-sively alternatively spliced (Tang et al. 2011). These mutations are gain-of-function mutations in the CaV1.2 L-type calcium channel. They are both genetically and phenotypically distinct from other heart-hand syndromes (HHS), such as Holt-Oram Syndrome (HOS). While patients with HOS generally present with congenital heart defects and upper-limb anomalies, they

patients with HOS generally present with congenital heart defects and upper-limb anomalies, they do not exhibit the QT interval elongation or cognitive impair-ments seen in TiS (Basson et al. 1994).

Treatment TiS is a complex disorder that significantly affects multiple systems of the body. Its diverse phenotypic expression in various domains pre-sents difficulties in targeting intervention and treatments for the many cardiac, neurological, immunologic, and other symptoms. Primary attention of treatment and intervention is placed on mitigating severity of life-threatening cardiac arrhythmias and associated heart defects. Despite the syndrome’s rare nature, information regarding medical

and associated heart defects. Despite the syndrome’s rare nature, information regarding medical background and intervention is readily available from National Organization for Rare Disorders (NORD) and the Sudden Arrhythmia Death Syndromes Foundation (SADS).

The leading cause of death in patients with TiS is ventricular tachycardia and fibrillation. Because of its rarity, no significant data is available regarding the effectiveness of numerous cardiac treatments. Beta-blockers have been suggested as a standard treatment for children with TiS. Whether beta-blockers are effective forms of treatment remains in question. Addi-tional novel cardiac treatments such as sodium channel blockers have been proposed, with case studies describing their

treatments such as sodium channel blockers have been proposed, with case studies describing their effectiveness (Gao et al. 2013). However, broad and long-term efficacy of these treatments remain in question. As the TiS-associated mutation occurs in L-type calcium channel, treatment with L-type calcium channel blockers have also been suggested. Studies in animal models have shown potential but have not been proven to be effective in humans with TiS. Other cardiac-specific interventions include

not been proven to be effective in humans with TiS. Other cardiac-specific interventions include the use of pacemakers and defibrillators concur-rent with drug treatments for patients with TiS. However, immune systems of children with TiS are significantly affected. Consequently, any intervention utilizing internally placed devices poses a risk for infection. Additionally, anesthesia is known to trigger arrhythmias in TiS. Thus, any surgical intervention required to repair congenital cardiac

trigger arrhythmias in TiS. Thus, any surgical intervention required to repair congenital cardiac defects will require extreme care by treating physicians and caretakers.

While the average age of death in TiS is 2.5–3 yrs., children have been known to survive into their teenage years. Neuropsychiatric evaluations of individuals with TiS reveals significant speech and developmental delays, intellectual disability, and autism spectrum disorder. Delays in development can be alleviated through a broad and integrated therapies such as social integration, speech, and physical therapies. Early intervention is key to show marked benefit in treating the numerous

and physical therapies. Early intervention is key to show marked benefit in treating the numerous neuropsychiatric and cognitive symptoms of children with TiS.

Timothy Syndrome – 1 (TS1)  Timothy Syndrome – 2 (TS2)  Title IX Definition Title IX is a federal civil rights law that prohibits any college or university that receives federal funding from discriminating against an individual upon the basis of their sex. This includes female, male, and gender-nonconforming individuals. Recently it has been used to address sexual discrimination in a variety of forms including sexual harassment that involves both sexual violence and other forms of harassment

forms including sexual harassment that involves both sexual violence and other forms of harassment not involving violence. Sexual violence includes but is not limited to sexual assault, rape, sexual battery, and sexual coercion. The goal of this legislation is to prevent these forms of violence from seriously limiting or even denying a student’s ability to participate or benefit from the school’s educa-tional programs and activities. The law covers behaviors that occur both on and off campus.

According to the US Department of Education, the Office of Civil Rights (OCR) is responsible for the enforcement of Title IX as well as many other laws. The scope of Title IX according to OCR is the following: Title IX applies to institutions that receive federal financial assistance from ED, including state and local educational agencies. These agencies include approximately 16,500 local school districts, 7,000 postsecondary institutions, as well as charter schools, for-profit schools,

school districts, 7,000 postsecondary institutions, as well as charter schools, for-profit schools, libraries, and museums. Also included are vocational rehabilitation agencies and education agencies of 50 states, the District of Columbia, and territories and possessions of the United States. Educational programs and activities that receive ED funds must operate in a nondiscriminatory manner. Some key issue areas in which recipients have Title IX obligations are: recruitment, admissions, and

key issue areas in which recipients have Title IX obligations are: recruitment, admissions, and counseling; financial assistance; athletics; sex-based harassment; treatment of pregnant and par-enting students; discipline; single-sex education; and employment. Also, a recipient may not retaliate against any person for opposing an unlawful edu-cational practice or policy, or made charges, testi-fied or participated in any complaint action under Title IX. For a recipient to retaliate in any way is

or participated in any complaint action under Title IX. For a recipient to retaliate in any way is considered a violation of Title IX. The ED Title IX regulations (volume 34, Code of Federal Regula-tions, Part 106) provide additional information about the forms of discrimination prohibited by Title IX. (OCR 2015)

Historical Background On June 23, 1972, President Richard Nixon signed Title IX of the Educational Amendments into law (U.S. Department of Justice 2015). Ini-tially Title IX was used in the 1970s to leverage equal opportunity for female athletes in university sports programs (NCAA 2017). It was also used to protect pregnant students from being denied educational opportunities in both secondary and postsecondary institutions. This act amended the Higher Education Act of 1965, the Vocational

and postsecondary institutions. This act amended the Higher Education Act of 1965, the Vocational Education Act of 1963, the General Education Provisions Act, and the Elementary and Second-ary Education Act of 1965. The nickname of the Act is the Educational Amendments Act of 1972, rather than the longer title of all of the various acts it amended.

Current Knowledge Recent media attention has highlighted the problem of sexual assault on college campuses. According to the National Sexual Violence Resource Center (2016), 1 in 5 women and 1 in 71 men will be raped in their lifetimes. College-aged students in general are at a much higher risk of sexual assault than other facets of the popula-tion. In fact, 11.2% of all students experience rape or sexual assault through physical force, violence, or incapacitation (among all graduate and

rape or sexual assault through physical force, violence, or incapacitation (among all graduate and under-graduate students) (RAINN 2016). According to RAINN, among undergraduate students, 23.1% of females and 5.4% of males experience rape or sexual assault through physical force, violence, or incapacitation (2016). A survey from the Association of American Universities (2015) con-firmed the data with a finding that 23% of female college students experienced unwanted sexual contact. Well over 1/5

a finding that 23% of female college students experienced unwanted sexual contact. Well over 1/5 of transgender, gender-queer, and gender-nonconforming individuals have been sexually assaulted (RAINN 2016) which was also found to be the case in the AAU survey. The last finding is particularly important given the fact that recent research in the area of autism has found a higher incidence of gender nonconformity among ASD students. In a study conducted in the Netherlands, de Vries and her team

nonconformity among ASD students. In a study conducted in the Netherlands, de Vries and her team (2010) found an incidence of 7.8% of the children, and adolescents in their sample had gen-der identity disorder. This prevalence is ten times greater than incidence that is found in the non-ASD population. Strang et al. (2014) found that participants with ASD in their study were 7.59 times more likely to express gender variance. There are approximately a ½ dozen studies that link autism and the

to express gender variance. There are approximately a ½ dozen studies that link autism and the expression of gender variance. Clearly, students with ASDs, who have diffi-culty reading social situations and have difficulty self-advocating, are at higher risk of sexual assault than their nondisabled peers. They may be pre-ssured into sexual behaviors or into drinking alco-hol or recreational drug use. An individual cannot give consent to sexual activity if he or she is incapacitated due to drugs or

An individual cannot give consent to sexual activity if he or she is incapacitated due to drugs or alcohol. “A majority of all the victims of any nonconsensual sexual contact reported using alcohol or drugs prior to the incident: ranging from 61.7 percent to 93.8 percent,” in the 127 universities surveyed (Fisher et al. 2016, p. 39). “Victims of any nonconsensual sexual contact perceived that the offender was under the influence of alcohol or drugs prior to the incident (ranging from 66.7% to

offender was under the influence of alcohol or drugs prior to the incident (ranging from 66.7% to 83.8% across types of nonconsensual sexual contact)” (Fisher et al. 2016, p. 21).

Future Directions Students on the autism spectrum need to under-stand that they must give affirmative consent for each and every sexual activity they are to engage in. This means they must agree to the sexual contact voluntarily and that the agreement is mutual. The agreement can be verbal or nonver-bal. The nonverbal agreement is where students on the autism spectrum have the most difficulty. They may misunderstand or misread nonverbal cues. The consent should be given in a manner that both

They may misunderstand or misread nonverbal cues. The consent should be given in a manner that both parties can understand. Consent must be given for each act and upon each occasion. What was okay between two parties on 1 day may not be okay upon another day. What can be even more confusing is that consent can be with-drawn at any time. Consequently, the sexual activity must stop immediately. The consent also must be given without any force, coercion, or intimidation. Silence is not consent. A

consent also must be given without any force, coercion, or intimidation. Silence is not consent. A lack of resistance, likewise, is not consent either. Future research should be aimed at how best to teach students on the spectrum of these complex social concepts.

In an effort to fit in, some students on the autism spectrum may be duped into saying or doing something to a fellow student that could be construed as sexual harassment. Nondisabled peers may goad a student on the spectrum into saying something about another student’s anat-omy, making a sexually suggestive comment or joke, or even kissing or groping another student. Students on the autism spectrum should read the university’s student code of conduct in reference to the definitions of sexual

should read the university’s student code of conduct in reference to the definitions of sexual harassment.

Most often male students on the spectrum may develop a romantic interest in a female student and not know how to express the interest in an appropriate manner. Here, the student on the autism spectrum should again consult the student code of conduct. Many times, these students are in violation of the student code of conduct in relation to the rules against stalking. These students find themselves facing disciplinary proceedings and not understanding why this is happening. High school transition

facing disciplinary proceedings and not understanding why this is happening. High school transition programs should include social skills training in the areas of assertiveness, sexual harassment, and appropriate platonic and roman-tic relationships.

If you are a student on the autism spectrum or if you care for an individual on the spectrum and that person is a victim of sex-based discrimina-tion, know that there are professionals at colleges and universities nationwide that are dedicated to helping students with this difficult situation. Look for your college’s Title IX coordinator’s name and contact information. He or she has a number of resources at her or his disposal to help you including counseling and health referrals, as well as

resources at her or his disposal to help you including counseling and health referrals, as well as support in filing reports and helping to insure your safety from further harm. It is imperative that a student receive help and support from family, friends, and health-care providers during this most difficult period. Future research needs to be aimed at preventing sexual assault among the ASD pop-ulation attending college.

If you are a student on the autism spectrum who is accused of violating your college’s code of conduct, know that the Title IX coordinator’s job is to help support you through the process as well. He or she will inform you as to what exactly is going to happen, i.e., what the process will be, what your rights are, what prohibitions you might face during the process, and finally what are the possible outcomes of the process. Tell the Title IX person the exact nature of your disability and what

outcomes of the process. Tell the Title IX person the exact nature of your disability and what reasonable accommodations you might need, including designating a support person or advisor to you – who can help guide you through the process. Find out whether the college follows an investigator model or a judiciary or hearing model. An investigatory model may be easier for students on the spectrum to negotiate because it involves less people than a hearing panel model. Read your college’s Title IX

negotiate because it involves less people than a hearing panel model. Read your college’s Title IX web page as well as the student code of conduct. Finally, future research should investigate how best to support victims of sexual assault who are on the autism spectrum, as well as individuals on the autism spectrum who are accused of stalking, sexual harassment, and sexual assault. A focus of this research should be what reasonable accommoda-tions under the Americans with Disabilities Act would

research should be what reasonable accommoda-tions under the Americans with Disabilities Act would best help students with ASDs in these situations.

TNL 2  Toddler Infant Motor Evaluation Description Toddler infant motor evaluation can be thought of as a generic term for assessment of various aspects of motor development and skills in babies and young children, although there is also a specific assessment known as the Toddler and Infant Motor Evaluation (T.I.M.E.). There are many developmental tests that include motor scales for the 0–3 age group. Assessments for infants often include tests of neonatal reflexes and develop-mental motor

age group. Assessments for infants often include tests of neonatal reflexes and develop-mental motor milestones expected in the first year of life. Motor assessment for toddlers usually includes emerging use of writing and eating uten-sils, object manipulation, and play skills. This entry focuses specifically on the T.I.M.E. stan-dardized assessment.

This test was designed to provide a compre-hensive assessment of motor abilities, in con-junction with occupational and functional performance in children 4 months to 3½ years of age. It takes 10–20 min to administer to younger children and 20–40 min to administer to older children. The five primary subtests of the T.I.M.E. are mobility, stability, motor organiza-tion, social/emotional abilities, and functional performance.

Historical Background The T.I.M.E. was developed by Lucy Jane Miller, Ph.D., OTR, and Gale Roid, Ph.D., in 1994. It was designed to be a comprehensive assessment of motor development and quality of motor functions.

Psychometric Data Standardization Standardization data represents the total popula-tion by matching sample criterion to the overall geographic region, gender, race, and exceptional-ity data noted in the US Census data report in 2004–2005. The standardization population consisted of 1310 children from 22 states and 136 geographically diverse communities. Various exceptionalities were presented in the inclusion of children with specific language impairment (SLI). The normative sample mirrors the

the inclusion of children with specific language impairment (SLI). The normative sample mirrors the current population, where 7% of the normative sample were children with SLI and 7.42% of the total population is constituted by those with SLI (DiSimoni et al. 2007).

The representation of the sample spans across three targeted subgroups. These subgroups consist of children who were classified as representative of the mainstream, minority, or exceptional pop-ulation. The mainstream subgroup includes male and female Caucasians while the minority sub-group includes male and female African Ameri-cans, Hispanic Americans, Asian Americans, and American Indians. Finally, the exceptionality sub-group includes those children who are gifted and talented as well as

the exceptionality sub-group includes those children who are gifted and talented as well as individuals with autism, attention-deficit/hyperactivity disorders, articula-tion disorders, intellectual disabilities, learning disabilities, or SLI (DiSimoni et al. 2007).

Reliability *   Internal consistency ranges from .72 to .97. *   Test-retest – in a sample of 33 children (9% with motor delays) with a retest of 1–3 weeks, the test-retest correlation coefficient ranged from .965 to .998.
*   Interrater reliability – in a sample of 31 children tested by two independent examiners, the correla-tion coefficient ranged from .897 to .996.

Validity Discriminant validity and classifi-cation accuracy were determined through a series of analyses, which demonstrated false positives between 1.1% and 11.8%, false negatives between 1.0% and 3.2%, specificity between 85.9% and 98.6%, and sensitivity between 80.6% and 97.2%.

Clinical Uses The T.I.M.E. is conceptualized as a diagnostic assessment designed for use by a licensed or highly trained physical or occupational therapist, adaptive physical education teacher, or others with specialized training in the motor domain.

Toe Walking Definition Humans exhibit plantigrade walking: They walk on the full soles (bottoms) of their feet. Toe walking involves walking on the balls (distal metatarsals/ metatarsal heads) of the feet with the heel (calcaneus) raised up off the ground. Typically developing children will intermittently walk on their toes for a short while after first beginning ambulation. When the equinus gait is noticeably present after 3 months of walking, it is referred to as persistent toe walking. In

is noticeably present after 3 months of walking, it is referred to as persistent toe walking. In the past, this was consid-ered a sign of possible spastic cerebral palsy, but many children who toe walk do not exhibit any other signs of neuromotor disorder (hypertonicity, hyperreflexia, and upgoing Babinski reflexes). Orthopedics sometimes attributed this gait to a shortened tendo Achilles (short heel cord) even in the absence of a shortened ligament. Children with a neuromotor problem such as

heel cord) even in the absence of a shortened ligament. Children with a neuromotor problem such as spastic diplegia will toe walk with their knees flexed, while children with idiopathic toe walking will toe walk with their knees extended. Since toe walking may be inhibited by certain types of shoes, its presence should be assessed with shoes off. Persistent toe walking has been noted to be more common in children across the entire spectrum of neurodeve-lopmental disorders apart from any motor

common in children across the entire spectrum of neurodeve-lopmental disorders apart from any motor diagno-sis, and to be even more common in children with their language skills more severely impaired than the other developmental streams. Among children with language disorders, children with autism exhibit the highest persistence of toe walking, with close to 50% of 5-year-old children with autism continuing to exhibit at least an intermittent equinus gait (Accardo and Whitman 1989; Accardo et

continuing to exhibit at least an intermittent equinus gait (Accardo and Whitman 1989; Accardo et al. 1992; Shulman et al. 1997). The persistence of toe walking in children with autism may contribute to secondary motor deformity by producing a gen-uine shortening of the tendo Achilles. Treatments for this secondary deformity can include stretching exercises, casting or braces, Botox injections, and, in rare cases, heel cord lengthening surgery. Toe walking seems to be more correlated with the

and, in rare cases, heel cord lengthening surgery. Toe walking seems to be more correlated with the lan-guage component of autism, since it is not appre-ciably increased in children with Asperger Syndrome where language is less affected (Barrow et al. 2011). The etiology behind the association between toe walking and autism/lan-guage disorders remains unclear. It may be related to a sensory disorder or to the persistence of a remnant of the infantile tonic labyrinthine reflex.

Tofranil  Toilet Training Definition The process of achieving continence by applying a systematic approach to teach another to gain con-trol over urine and bowel movements. Successful toilet training is a combination of attaining conti-nence while also completing the chain of behaviors associated with toileting including traveling to the bathroom, undressing, voiding into the toilet, redressing, washing hands, and leaving the bath-room. Teaching continence in toilet training is often achieved

washing hands, and leaving the bath-room. Teaching continence in toilet training is often achieved using one or more of the following teach-ing components and strategies: scheduled sitting, urine alarms, reinforcement for in-toilet voids, hydration, prompting and prompt fading, over-correction, and environmental restitution.

Historical Background The systematic teaching of toilet training was born in the 1960s paralleling the rise of behavior-ism. Toilet training is one of the cardinal skills that lent itself to behavioral research in that it was relatively easy to study in terms of both target behavior descriptions and clear, definable out-comes. That is, voids were distinctly defined and mutually agreeable with little room for error in definition or observation. Similar to most of the behavioral research coming out

room for error in definition or observation. Similar to most of the behavioral research coming out of this era, the early work on toileting was conducted largely with institutionalized persons globally develop-mentally delayed or disabled, both children and adults, acting as samples of convenience. Early work focused on systematic presentation of pro-mpts to void and positive reinforcement for accu-rate voiding behavior. The beginning body of toilet training research was furthered by Drs.

accu-rate voiding behavior. The beginning body of toilet training research was furthered by Drs. Nathaniel Azrin and Richard Foxx who are credited with developing the rapid toilet training (RTT) method, the most cited and comprehensive toilet training protocol, and widely adapted for everyone from typically developing children to profound developmental disabilities such as autism to subspecialty, rare diagnoses such as Angelman syndrome. The novelty and appeal of the RTT approach was two-fold

rare diagnoses such as Angelman syndrome. The novelty and appeal of the RTT approach was two-fold in that it provided a comprehensive approach targeting all toileting behaviors at once (i.e., bladder and bowel conti-nence, as well as associated self-help skills of undressing and redressing) and achieved results in an extraordinary short amount of time (median of 4 days to train to independent toileting behav-ior). The original RTT method included hydrating the individuals for increased

toileting behav-ior). The original RTT method included hydrating the individuals for increased opportunity to void, using graduated guidance with prompt fading as individuals were more successful with the set elimination schedule, contingency management with positive reinforcement for dry pants checked systematically and in-toilet voids and punishment consisting of overcorrection and environmental restitution for accidents and out-of-toilet voids. Despite the success of RTT, the protocol is

restitution for accidents and out-of-toilet voids. Despite the success of RTT, the protocol is often disaggregated and components used individually as training protocols in and of themselves. This reduction of protocol is largely due to shifts in treatment procedures and setting locations. Most notably, the use of punishment in primary treat-ment protocols has fallen by the wayside in sup-port of more popular positive behavior support interventions and institutions have been replaced by home

of more popular positive behavior support interventions and institutions have been replaced by home and school treatment settings, extending privacy rights with reduced apparati needs.

Current Knowledge The current state of the science for toilet training research supports the use of the Foxx and Azrin protocol, as well as its empirically supported derivatives. The RTT method has been largely adapted and widely accepted for its use in positive reinforcement protocols and as it applies to indi-viduals with autism. Empirical evidence has repeatedly shown that an intensive toilet training method with positive reinforcement for target behaviors and void-specific contingency

training method with positive reinforcement for target behaviors and void-specific contingency manage-ment is effective and, in turn, effective with chil-dren with autism. Most toileting studies published within the past 20 years focus largely on RTT-derived protocols and particularly in the area of positive reinforcement based training (see Kroeger and Sorensen-Burnworth 2009 for review; Kroeger and Sorensen-Burnworth 2010). Other areas of foci include stimulus controls stud-ies and

Kroeger and Sorensen-Burnworth 2010). Other areas of foci include stimulus controls stud-ies and behavior-specific problem solving (e.g., Hagopian et al. 1993; Luiselli 1996). That is, the research has moved to cases where the established protocols have failed and revised the protocol to problem solve specifically at the target behavior. For example, if the individual only voids when in water, the intervention begins with first gaining control over the behavior in water. Non-academic professionals

begins with first gaining control over the behavior in water. Non-academic professionals and paraprofessionals also successfully implement the translational model of toilet training with a focus on the posi-tive reinforcement contingent upon scheduled sit-tings. Often when the research becomes practice, residual issues are noted to occur including addi-tional bowel movement training, communication to use the restroom, deficits in redressing, and non-self-initiated voiding.

Future Directions Future research endeavors include expansion of trainer characteristics, as well as problem-solving residual issues. A number of toileting protocols exist within the literature, many of them success-ful and capable of generalization to a wide variety of individuals within the autism and developmen-tal disability population. While most of the pro-grams are modified versions of the toileting protocol presented by Foxx and Azrin, studies focus on abbreviating the protocols while

toileting protocol presented by Foxx and Azrin, studies focus on abbreviating the protocols while also reducing steps, components, and professional training involvement. That is, the trend is to make less complicated the toileting protocols pre-viously originated. Future areas of toileting liter-ature should focus on the following: (1) collateral behaviors pivotal to successful toileting training, including communication, self-initiation, and bowel movement training; (2) exploration of age and

including communication, self-initiation, and bowel movement training; (2) exploration of age and functioning limits (i.e., how young to train and how cognitively disabled is trainable); and (3) review of necessary prerequisite skills suggested present before initiating toilet training. Such investigations will serve to continue the body of literature surrounding toilet training, while at the same time providing improved quality of life for individuals with autism spectrum disor-ders and

same time providing improved quality of life for individuals with autism spectrum disor-ders and intellectual disability.

Token Economy Definition The token economy is a highly individualized, reinforcement-based, behavior change system, derived from the principles of operant condition-ing that can be used with individuals or groups. The specific components of a token economy include (a) the identification of measurable and observable target behaviors (e.g., verbal utter-ances, academic readiness behaviors) by interven-tion agents (e.g., teachers, parents), (b) the administering of tokens (e.g., points, check

agents (e.g., teachers, parents), (b) the administering of tokens (e.g., points, check marks, real or imitation money), which function as generalized conditioned reinforcers, by the intervention agent to the participant, and (c) the exchange of tokens by the participant for a variety of backup reinforcers (e.g., line leader, computer time, snacks). Generally speaking, participants earn tokens contingent on the occurrence of target behaviors; subsequently participants exchange the tokens for a

on the occurrence of target behaviors; subsequently participants exchange the tokens for a variety of backup rein-forcers (Cooper et al. 2007). Likely the most widely known and used token in the world is money. Money is not initially reinforcing but acquires the properties of a reinforcer after multiple pairings with another reinforcer; it is a conditioned reinforcer that can be exchanged for a wide variety of backup reinforcers (e.g., food, shelter, clothing, entertain-ment, transportation).

Historical Background The origins of the token economy system can be traced back to Wolfe (1936) and Cowles (1937) during which time investigators provided tokens to chimpanzees when they engaged in correct responses, and later trained the chimpanzees to exchange the tokens for grapes. However, few token economy systems were utilized with humans prior to the 1960s. Pioneering research conducted by Ayllon and Azrin (1965, 1968) with adult psychiatric inpatients, as well as Staats and Wolf with

by Ayllon and Azrin (1965, 1968) with adult psychiatric inpatients, as well as Staats and Wolf with children (Staats et al. 1962, 1964), resulted in the peak of token economy research with humans in the 1970s and 1980s.

The all-encompassing literature surrounding the token economy is beyond the scope of this entry (for a review of the literature see Kazdin 1982; Kazdin and Bootzin 1972; Matson and Boisjoli 2009; O’Leary and Drabman 1971); how-ever, the contributions of the system are notewor-thy and a brief mention of various previous research conducted on token economies including those outside of the autism literature demonstrate the robust nature of the system. The token econ-omy has been shown to increase

demonstrate the robust nature of the system. The token econ-omy has been shown to increase a variety of appropriate behaviors and decrease a plethora of inappropriate behaviors, in a wide array of set-tings, with diverse populations, such as spontane-ous appropriate sentences in children with autism (Hung 1978), safety performance in open-pit min-ing (Fox et al. 1987), letter recognition and label-ing with preschool children (Kincaid and Weisberg 1978), dietary compliance for children on

label-ing with preschool children (Kincaid and Weisberg 1978), dietary compliance for children on hemodialysis (Magrab and Papadopoulou 1977), personal hygiene, personal management, ward work, and social skills with chronic psychi-atric inpatients (Nelson and Cone 1979), school achievement of children with Down’s syndrome (Dalton et al. 1973), academic readiness behav-iors of children with developmental disabilities (Plavnick et al. 2010), academic performance of children with autism

developmental disabilities (Plavnick et al. 2010), academic performance of children with autism (Charlop-Christy and Haymes 1998), encouraging car pool formation on a university campus (Jacobs et al. 1982), cleaning and hygiene behaviors of maximum security correctional institution inmates (Milan and McKee 1976), and conversation skills for adolescents with autism (McGee et al. 1984). The above paragraph is an indicator of the depth and breadth of token economy research and by the early 1970s

paragraph is an indicator of the depth and breadth of token economy research and by the early 1970s there were sufficient stud-ies conducted on the efficacy of token economies (although, not all specific to autism) (e.g., Birnbrauer et al. 1965; Broden et al. 1970; Bushell et al. 1968; Girardeau and Spradlin 1964; Hewett et al. 1969; Hunt et al. 1968; Hunt and Zimmerman 1969; Meichenbaum et al. 1968; O’Leary et al. 1969; Phillips 1968; Schaefer and Martin 1966; Tyler and Brown 1968) to warrant a

O’Leary et al. 1969; Phillips 1968; Schaefer and Martin 1966; Tyler and Brown 1968) to warrant a comprehensive literature review. O’Leary and Drabman (1971) conducted a literature review of token economy systems in the classroom. The authors reviewed the literature, identified vari-ables that could potentially influence token econ-omy effectiveness, and provided an in-depth discussion regarding the concern that token econ-omies did not necessarily result in generalization across situations or

the concern that token econ-omies did not necessarily result in generalization across situations or maintain upon withdrawal of the program. Additionally, Kazdin and Bootzin (1972) published an evaluative review of the token economy. This review of the token econ-omy differed from that of O’Leary and Drabman in that it was not limited to the use of token economies in the classroom and it provided a discussion on the methodology of token economy investigations. However, there was one salient

a discussion on the methodology of token economy investigations. However, there was one salient similarity between the reviews, and that was the lengthy discussion regarding stimulus and response generalization limitations and suggested procedures to increase generalization in future token economy investigations.

Early studies conducted with individuals with autism did not address generalization; however, they did demonstrate the efficacy of token economy systems with individuals with autism on both basic and complex behaviors. Ferster and DeMyer (1961, 1962) taught individuals with autism a basic response (key pressing) through the use of tokens (i.e., coins), which could be inserted into a vending machine to obtain a variety of reinforcers (e.g., food). Metz (1965) extended the research by increasing

to obtain a variety of reinforcers (e.g., food). Metz (1965) extended the research by increasing the complexity of the target behavior. Metz reinforced nonverbal imita-tive responses of children with autism, with tokens, which could be exchanged for food. How-ever, subsequent research may have been influenced by the suggestions provided by the O’Leary and Drabman (1971) and Kazdin and Bootzin (1972) reviews, as many studies specific to individuals with autism did attempt to assess the

(1972) reviews, as many studies specific to individuals with autism did attempt to assess the generalization and maintenance of behaviors learned during token economy interventions dur-ing the late 1970s and 1980s. Hung (1977) inves-tigated the effect of token value manipulations on spontaneous question-asking and generalization. Results indicated that the occurrence of general-ized spontaneous question-asking was minimal until token values were manipulated and increased. McGee et al. (1984)

question-asking was minimal until token values were manipulated and increased. McGee et al. (1984) taught individuals with autism to make positive and negative asser-tions in the context of two game situations to increase conversational skills during leisure time with the use of a token economy system. Gener-alization from trained to spontaneous assertions did occur within response classes. A particularly impressive demonstration of generalization occurred in the investigation by Krantz,

A particularly impressive demonstration of generalization occurred in the investigation by Krantz, Zalenski, Hall, Fenske, and McClannahan (1981) in which a token economy was used to teach individuals with autism complex expressive speech (i.e., the use of nouns, verbs, shapes/size, and color adjectives). Results indicated all children generalized their skills to a new teacher, a new classroom, and a new set of stimulus materials. Handen, Apolito, and Seltzer (1984) illustrated the assessment

and a new set of stimulus materials. Handen, Apolito, and Seltzer (1984) illustrated the assessment of maintenance. The authors used a token economy to decrease the rate of repetitive speech in an adolescent with autism and found that low rates of repetitive speech maintained at both a 9- and 14-month follow-up.

Kazdin (1982) published a follow-up paper to the Kazdin and Bootzin (1972) review that discussed the significant issues related to effective token economy implementation such as staff training, client resistance, response maintenance, integrity of treatment, administrative and organi-zational issues, and dissemination of the token economy. However, the overall lack of current literature specific to the implementation of token economies with individuals with autism prohibits an analysis of

to the implementation of token economies with individuals with autism prohibits an analysis of research related to the issues raised by Kazdin nearly 30 years ago.

Current Knowledge As previously stated, minimal research on the token economy related to individuals with autism is currently being conducted. In fact, Matson and Boisjoli (2009) conducted a review of the litera-ture surrounding the token economy for children with intellectual disabilities and autism and found only seven investigations specifically related to individuals with autism (Handen et al. 1984; Hung 1977; Kahng et al. 2003; McDonald and Hemmes 2003; Odom et al. 1985; Steeves et al.

al. 1984; Hung 1977; Kahng et al. 2003; McDonald and Hemmes 2003; Odom et al. 1985; Steeves et al. 1970; Tarbox et al. 2006).

A majority of the studies conducted during this time frame fall into one of two categories. One, researchers were investigating the effects of the token economy as the independent variable on various dependent variables. For example, McDonald and Hemmes (2003) investigated the use of a token economy and prompts to increase social initiations by an adolescent with autism and reciprocity effects. Social initiations by the partic-ipant were higher during the token economy train-ing conditions.

Social initiations by the partic-ipant were higher during the token economy train-ing conditions. Additionally, spontaneous staff initiations toward the youth increased during treatment when the frequency of the youth’s initi-ations increased. Kahng et al. (2003) increased food acceptance in a preschool-aged child who had speech delay and possible pervasive develop-mental disorder by using escape from a meal and a token economy. The child could earn tokens by accepting a bite of food and she

from a meal and a token economy. The child could earn tokens by accepting a bite of food and she could exchange the tokens for meal termination. Results indicated that this condition (as compared to differential positive reinforcement of alternative behavior and differential positive reinforcement of alternative behavior plus physical guidance) was effective at increasing the number of bites accepted and decreasing the instances of food refusal. Finally, Tarbox et al. (2006) used a token

accepted and decreasing the instances of food refusal. Finally, Tarbox et al. (2006) used a token economy to increase the attending behavior of a young child with autism. Attending behaviors increased; however, the behaviors did not main-tain during conditions in which the tokens were not exchanged for backup reinforcers and delay to exchange of the backup reinforcers occurred.

Two, investigators were interested in compar-ing various treatment approaches and the token economy is one component within the training conditions, that is not specifically being manipu-lated or assessed. For example, Gena, Couloura, and Kymissis (2005) conducted a comparison of video modeling and in vivo modeling to teach preschoolers affective behavior. However, both conditions included the use of verbal praise and a token economy. The authors reported that both treatments (in vivo and video

of verbal praise and a token economy. The authors reported that both treatments (in vivo and video modeling) success-fully increased affective responding by all partic-ipants and generalization occurred across responses to untrained scenarios, the child’s mother, new therapists, and time. Additionally, Hilton and Seal (2007) conducted a comparative analysis of applied behavior analysis (ABA) and Developmental, Individual Difference, Relationship-Based model (DIR) in twin brothers with autism.

Developmental, Individual Difference, Relationship-Based model (DIR) in twin brothers with autism. The ABA program, among other things, consisted of a token economy. The authors reported variable improvement in both the ABA and DIR programs.

However, there is a third category that includes research that has begun to investigate some of the salient issues raised by Kazdin’s (1982) review. First, Kazdin iterated the importance of staff train-ing and the relationship to procedural integrity within the constraints of existing settings, stating, “too little attention has been accorded the manner in which the program is monitored and implemented” (p. 437). Plavnick et al. (2010) assessed the effects of self-monitoring on the pro-cedural

(p. 437). Plavnick et al. (2010) assessed the effects of self-monitoring on the pro-cedural integrity of token economy implementa-tion by staff in a special education classroom. Additionally, the academic readiness behaviors (i.e., appropriate sitting and vocalizing) of stu-dents with autism and Williams syndrome were assessed during conditions in which staff were (1) trained on token economy implementation, (2) independently implemented the token econ-omy, and (3) self-monitored their

implementation, (2) independently implemented the token econ-omy, and (3) self-monitored their implementation of the token economy. Results suggested that pro-cedural integrity was high during the self-monitoring condition for the staff and the percent-age of intervals in which students engaged in academic readiness behaviors increased during conditions of high procedural integrity. Second, Kazdin discussed the notion of client resistance to the token economy and subsequently suggested the

discussed the notion of client resistance to the token economy and subsequently suggested the creative selection of reinforcers and opportu-nities for clients to have input into the system. Charlop-Christy and Haymes (1998) investigated an important component of the token economy that involved creative tokens and participant input. The authors investigated the effectiveness of typical tokens (stars) and objects of obsession as tokens (“micromachine cards or trucks, the letter ‘A,’ names of

(stars) and objects of obsession as tokens (“micromachine cards or trucks, the letter ‘A,’ names of characters from videos, and plastic beads”) on task performance for children with autism. The participants performed with greater accuracy during the obsessions as tokens conditions, and although the authors provided many considerations for such results, it began to address the leading issues that Kazdin outlined many decades prior.

Based on the review of the literature above, it may be apparent that token economy systems vary greatly in terms of simplicity and complex-ity. The design and implementation of a token economy system can be cumbersome and requires meticulous planning and execution; however, if done properly, the system can be highly effective. Although future research is needed to address all the facets of token economy systems in relation to individuals with autism; the likelihood of implementing a successful

economy systems in relation to individuals with autism; the likelihood of implementing a successful token economy can be increased by utilizing the basic steps below:

1.  Intervention agent identification.     *   (a) Determine who will administer tokens. Intervention agents may include one per-son (e.g., school professional, parent) or everyone employed in a school building (e.g., general educators, special educators, paraprofessional, bus drivers, administra-tors, cafeteria workers).

*   (b) Administer detailed training to all individ-uals who have regular contact with the participant(s). Include procedures that specify the participants, target behaviors, tokens, rules regarding the distribution and exchange of tokens, identification of and availability of backup reinforcers, protocol for not meeting criteria, policies regarding unused tokens, plans for generalization, maintenance, and withdrawal of the token economy, and so forth.

*   (c) Monitor intervention agents. *   (d) Evaluate and respond to the needs of the intervention agents. 2.  Participant identification.     *   (a) Determine who will participate in the token economy. Participants may include, for example, just one individual, groups within a classroom, or all students within a school district.
    *   (b) Determine criteria for the inclusion, exclu-sion, and removal of participants in the token economy.

3.  Target behavior identification. Myles, Moran, Ormsbee, & Downing (1992) provide the fol-lowing guidelines regarding target behavior identification.
    *   (a) Select observable and measureable target behaviors. These may be the same behav-iors for all participants or different behav-iors for each participant.

*   (b) Determine the criteria for each target behavior. For example, if “on-task” is the target behavior, how many seconds, minutes, or instances of on-task behavior need to occur before a token will be distributed.
    *   (c) Require first a few, easy behaviors that gradually increase as the individual becomes successful.
    *   (d) Ensure that the participant has prerequisite skills necessary to perform the target behavior.

4.  Token identification.     *   (a) Select tokens that are safe (cannot be swallowed or cause injury), unique (so that participants cannot buy, access, accumulate tokens independent of the occurrence of the target behavior), durable, readily available, and inexpensive (Cooper et al. 2007). The research is inconclusive regarding the comparative efficacy of neu-tral or highly desirable tokens (see Charlop-Christy and Haymes 1998 for one such investigation).

*   (b) Note that praise should always be paired with token distribution to increase the like-lihood that praise will eventually function as a conditioned or generalized condi-tioned reinforcer.
5.  Backup reinforcer identification.     *   (a) Reinforcers should be nonintrusive and occur naturally in the environment (e.g., music, books, teacher helper) and should never prohibit the individual from accessing basic needs (e.g., food, warmth, hygiene products).

*   (b) If the above reinforcers prove to be inef-fective, reinforcers that are not naturally occurring (e.g., candy, pop, video-game time) may be considered.

*   (c) Determine the price of the backup rein-forcers. For example, highly preferred items may cost more than low preference items or items may be auctioned. Addition-ally, the cost of backup reinforcers may increase or the value of tokens may decrease as the participant becomes more proficient in the target behavior (Cooper et al. 2007).

6.  Cooper et al. (2007) suggest field-testing the system prior to implementation. Data from the field-test can be used to make adjustments to the system prior to full-scale implementation.

7.  Finally, participant training. Training proce-dures will vary based on the functioning level of the participant. For higher functioning par-ticipants, an explanation may suffice. How-ever, lower functioning participants may require explicit training, models, physical and verbal prompts (Cooper et al. 1987). Snell (1983) offers a helpful step-by-step training protocol for training lower functioning individ-uals to use a token economy.

An optional element that can be used in con-junction with the reinforcement-based token econ-omy is response cost. Response cost is a form of punishment by removal, in which reinforcement is removed based on the occurrence of inappropriate behavior and results in the decreased likelihood of such future behavior. For example, an individual with autism may earn tokens for the use of sponta-neous communicative acts (e.g., unprompted exchange of picture symbols, unprompted vocal verbal mands,

communicative acts (e.g., unprompted exchange of picture symbols, unprompted vocal verbal mands, unprompted gestures) and lose points (i.e., response cost) for disruptive behaviors (e.g., humming, tongue clicking, aggression). Therefore, in a 30-min period, the individual may earn 10 tokens for spontaneous communicative acts, and lose 2 tokens for instances of aggression, in which case the individual would have 8 tokens available for exchange of backup reinforcers. There are many serious

individual would have 8 tokens available for exchange of backup reinforcers. There are many serious considerations that should be contemplated before deciding upon the use of any punishment-based system, and response cost is not an exception. For more information regarding these considerations, please see Cooper et al. (1987, 2007).

Future Directions The future direction of token economy research specific to individuals with autism is largely unknown. Historically, there was a flurry of research during the 1970s and 1980s, but has nearly ceased in recent decades. There are still many unanswered questions regarding token economy systems and individuals with autism. For example, it would be important to, (a) consider the feasibility of training intervention agents such as parents, teachers, caregivers, speech and language

of training intervention agents such as parents, teachers, caregivers, speech and language patholo-gists, or individuals other than researchers, (b) assess the effects of procedural integrity on participant skill acquisition, (c) identify the ideal schedules of reinforcement to maintain perfor-mance upon the removal of token economies, (d) study the effects of participant input on rein-forcer and contingency selection, (e) address all aspects of stimulus and response generalization, (f) study

contingency selection, (e) address all aspects of stimulus and response generalization, (f) study efficacy of token economies in relation to participant demographics, such as age, cognitive level, and specific diagnosis on the spectrum, (g) compare individual versus group token econo-mies, and (h) compare the token economy to other treatment options in terms of time, cost, resources, feasibility, utility, social validity, and efficacy. However, ultimately the future direction of autism research as

social validity, and efficacy. However, ultimately the future direction of autism research as it relates to the token economy will be determined by the research questions that investi-gators deem most crucial, applicable, and feasible at that point in time. The possibilities are endless and the future is quite exciting.

Token Test for Children – Second Edition (TTFC-2) Description The Token Test for Children, Second Edition (TTFC-2) is a quick 10- to 15-min screening measure intended for identifying receptive lan-guage difficulties in children ages 3–12 years and 11 months. The overall score reflects the child’s ability to follow multiple-step oral direc-tions, understand spoken language components, and recall short-term auditory memory. Syntactic structures, knowledge of prepositional and rela-tional concepts,

auditory memory. Syntactic structures, knowledge of prepositional and rela-tional concepts, and semantic development are among the linguistic components assessed. The TTFC-2 manual notes that the test is an effective addition to comprehensive language assessment as a means of gathering targeted information of receptive language skills. Results from the TTFC-2 provide specified information that allows clinicians to glean the relative impact of receptive language difficulties and “subtle language

clinicians to glean the relative impact of receptive language difficulties and “subtle language defi-cits” on functional language and communication outcomes (Harris et al. 1983). Harris et al.’s (1983) exploration reveals that there is a parallel relationship between dichotic listening tasks and TTFC results, wherein results on the TTFC aligned with higher deficits in dichotic listening. Thus, the TTFC provides an accurate indicator of receptive language abilities that can be used when

Thus, the TTFC provides an accurate indicator of receptive language abilities that can be used when investigating relationships among receptive lan-guage abilities and other auditory language tasks.

The TTFC-2 manual highlights that some training is necessary in order to ensure that inter-nal consistency measures are accurate. Thus, the TTFC-2 may be administered by speech-language pathologists, school psychologists, special educa-tion teachers, education specialists, and those with training in standardized test administration (DiSimoni et al. 2007). Administration protocol begins with three unscored practice items before the evaluation. The test consists of 46 verbally transmitted

three unscored practice items before the evaluation. The test consists of 46 verbally transmitted commands that are divided into 4 parts according to level of complexity. The clinician is required to administer all 46 test items in successive order given the exception of children who cannot successfully complete the practice items.

Following the test administrator’s command, the test-taker is required to manipulate the provided tokens under the constraints of the com-mand. Commands are varied in length and com-plexity and utilize the variety of token colors and shapes to add complexity to each portion of the test. The materials required for administration include the TTFC-2 manual, 20 token manipula-tives that differ in size (small and large), shape (circle and square) and color (green, blue, red, yellow, and white), and

(small and large), shape (circle and square) and color (green, blue, red, yellow, and white), and the provided test sheets (Alkhamra and Al-Jazi, 2016). The data recorded on the test sheets provides a measurement of test-taker success as a function of their ability or inability to successfully complete the verbal com-mands. Thus, score interpretation of the TTFC-2 identifies children that are significantly below their peers in receptive language abilities. Five distinct types of informative

significantly below their peers in receptive language abilities. Five distinct types of informative scores, namely, standard score, percentile rank, standard error of measurement (SEM), descriptive rating, and listening age, are obtained from the recorded raw score. The standard score, age equivalents, and percentile ranks are converted from the raw score, and the SEM is a measure of age and coefficient alpha. As a final measure, six descrip-tive ratings ranging from very poor to very supe-rior

alpha. As a final measure, six descrip-tive ratings ranging from very poor to very supe-rior are obtained from the percentile ranks and standard scores (DiSimoni et al. 2007). The scores on the TTFC-2 are a measure of language comprehension through the receptive mode. All scoring for the TTFC-2 is scored as correct (1) or incorrect (0). To receive a correct score, the task must be performed with 100% accuracy; no partial credit is received. Distracti-bility, impulsiveness, as well as a severe

100% accuracy; no partial credit is received. Distracti-bility, impulsiveness, as well as a severe physical disability should be considered as possible confounding factors that may account for depressed scores (DiSimoni et al. 2007). Thus, lower scores on the TTFC-2 resulting from the inability to successfully carry out the commands may indicate the presence of a developmental disorder or extreme impairment of visual pro-cessing ability.

Historical Background The original Token Test, designed by DeRenzi and Vignolo (1962), sought to measure receptive lan-guage comprehension in adults with aphasia by way of following directions applied to token manipulatives. Several adaptations were made following the earliest rendition, all of which mea-sured the patient’s ability to manipulate the tokens upon five sets of oral commands that systemati-cally increased in both length and complexity. The emergence of research by DiSimoni in 1978

increased in both length and complexity. The emergence of research by DiSimoni in 1978 questioned the Token Test’s efficacy when evaluating children for several reasons, including lack of age norms, socioeconomic group compar-isons, and lack of clarity in data collection. This research prompted DiSimoni’s development of the Token Test for Children (TTFC) in 1978, which integrated the variety of command sequences and use of tokens present in the original test with standardized administration

command sequences and use of tokens present in the original test with standardized administration protocol and increased sample size to forge it’s viability for children aged 3 years to 12 years and 6 months. Following the development of the TTFC, later research suggested that despite improvements in standardization and clarity, deficits in the psycho-metric stability of the test remained present. In 2007, DiSimoni, Ehrler, and McGhee developed the second edition, the TTFC-2, with detail to

In 2007, DiSimoni, Ehrler, and McGhee developed the second edition, the TTFC-2, with detail to improving validity, reliability, and normative data to be critically representative of the demographics of the current US population. The TTFC-2 aims to improve shortcomings by providing targeted performance data based on a variety of ethnic, gender, disability, and race discrepancies.

Psychometric Data Standardization Standardization data represents the total popula-tion by matching sample criterion to the overall geographic region, gender, race, and exceptional-ity data noted in the US Census data report in 2004–2005. The standardization population consisted of 1310 children from 22 states and 136 geographically diverse communities. Various exceptionalities were presented in the inclusion of children with specific language impairment (SLI). The normative sample mirrors the

the inclusion of children with specific language impairment (SLI). The normative sample mirrors the current population, where 7% of the normative sample were children with SLI and 7.42% of the total population is constituted by those with SLI (DiSimoni et al. 2007).

The representation of the sample spans across three targeted subgroups. These subgroups consist of children who were classified as representative of the mainstream, minority, or exceptional pop-ulation. The mainstream subgroup includes male and female Caucasians while the minority sub-group includes male and female African Ameri-cans, Hispanic Americans, Asian Americans, and American Indians. Finally, the exceptionality sub-group includes those children who are gifted and talented as well as

the exceptionality sub-group includes those children who are gifted and talented as well as individuals with autism, attention-deficit/hyperactivity disorders, articula-tion disorders, intellectual disabilities, learning disabilities, or SLI (DiSimoni et al. 2007).

Reliability The test reliability, validity, and score compar-ison results indicate consistencies and demon-strate the efficacy of the battery. Reliability is substantially positive with coefficients that range from an average of 0.96 for test-retest reliability to 0.99 for interscorer reliability.

Validity Validity coeffi-cients further evidence consistencies through construct-identification and criterion-prediction validity that both indicated validity as a measure of five testable questions and three independent studies. Evidence of validity is further propagated by conventional and differential item analysis techniques that revealed accuracy in capturing the variance of receptive language skills as well as a lack of bias in the language of the command stimuli. As a final measure of

skills as well as a lack of bias in the language of the command stimuli. As a final measure of validity, the scores and measurements from the TTFC-2 were directly compared with the Test of Early Language Devel-opment (TELD-3), the Receptive One-Word Pic-ture Vocabulary Test (ROWPVT-2000), and the Expressive One-Word Picture Vocabulary Test (EOWPVT-2000) to reveal significant correla-tions with coefficients at the 0.001 level. Thus, the reliability and validity measures support the efficacy and

coefficients at the 0.001 level. Thus, the reliability and validity measures support the efficacy and psychometric stability of the TTFC-2 (DiSimoni et al. 2007).

Clinical Uses The literature reveals that the TTFC-2 is not only a useful tool for children who speak Standard American English, but also holds clinical utility when serving several diverse cultural-linguistic communities. Research by Alkhamra and Al-Jazi (2016) unveil the Arabic Token Test for Children (A-TTFC) as a valid, reliable, and appropriate mea-sure of receptive language in the assessment of children who are native speakers of Arabic. The A-TTFC was developed as a translation of the

of children who are native speakers of Arabic. The A-TTFC was developed as a translation of the TTFC, and as a translated test, the “content of the test and the construct measures most likely do not change. . .the test score is therefore less threatened” (Alkhamra and Al-Jazi 2016, p. 184). The study investigates this probability by systematically eval-uating the performance of 397 Jordanian children on the A-TTFC. Prior to their evaluation, each child was tested to ensure their ability to hear

on the A-TTFC. Prior to their evaluation, each child was tested to ensure their ability to hear the linguistic commands via administration of the Ling Six Sound Test. Data collection to determine the efficacy in standardization of the A-TTFC was performed through factor analysis, bilingual vali-dation, and age difference analysis in order to “support the accuracy of the translation process [as well as] the validity of the A-TTFC” (Alkhamra and Al-Jazi 2016, p. 189). Thus, the A-TTFC provides a

as] the validity of the A-TTFC” (Alkhamra and Al-Jazi 2016, p. 189). Thus, the A-TTFC provides a formal tool for receptive lan-guage assessment in native Arabic-speaking chil-dren that maintains the same clinical strengths and utility as the TTFC-2 for native English speakers.

In addition to the A-TTFC, research by Gallardo et al. (2011) uncovers many available versions of the TTFC that have been developed in Dutch, German, Khmer, Kannada, Polish, Portuguese, and several Spanish-speaking populations. Yet, the authors posit that many of these versions may not be viable for use in practice, as there is a lack of standardization and psychometric evidence that is necessary for efficacy (Gallardo et al. 2011). Thus, Gallardo et al.’s study sought to explore these measures

for efficacy (Gallardo et al. 2011). Thus, Gallardo et al.’s study sought to explore these measures of efficacy in the Revised Token Test (RTT) in 250 Spanish-speaking children aged 4–12 years old. Analyses of vocabulary knowledge and intelligence were recorded as a means of obtaining language performance overall before administering the tests. The RTT results were then correlated with the results on the prerequisite test-ing in order to determine criterion validity. Addi-tional measures of

on the prerequisite test-ing in order to determine criterion validity. Addi-tional measures of factorial analysis and analysis of variance were carried out to arrive at a statistical outcome. Results from this study indicate that the RTT is a reliable and valuable tool for the assess-ment of Spanish-speaking children due to its psy-chometric sensitivity. While the authors outlined these positive outcomes, they caution clinicians that further research into the normative data and increased sample

they caution clinicians that further research into the normative data and increased sample size is warranted prior to use of the RTT with Spanish-speaking children (Gallardo et al. 2011).

Tolerance for Delay  Tone of Voice  TONI  Tonic-Clonic Seizure  ToP  Topamax (Topiramate) Definition Topamax is an anticonvulsant. The drug works by inhibiting glutamate activity (major excitatory neurotransmitter), attenuating activity of Na+ channels and high-voltage-activated Ca2+ chan-nels (preventing depolarization, i.e., excitation), and further potentiating gamma-aminobutyric acid (GABA) receptor-mediated inhibitory cell signaling. While there is some evidence of its effectiveness in

receptor-mediated inhibitory cell signaling. While there is some evidence of its effectiveness in ASD, further validation is required. Topamax’s mechanism of action is in concordance with theories of increased excitation in ASD patients. Side effects may include weight loss, somnolence, and anorexia.

Topic Management  Topiramate  TOPL-2  Total Communication (TC) Approach Definition Total communication (TC) is an educational phi-losophy which was introduced to the field of deaf education in the 1960s (Schow and Nerbonne 2007). TC utilizes all modalities of communica-tion (spoken, signed, and written) as well as lipreading, and gestures in the education of deaf children. Simultaneous communication (SimCom) is typically used in education settings that boast a TC approach (Power et al. 2008).

(SimCom) is typically used in education settings that boast a TC approach (Power et al. 2008). Users of SimCom speak and sign simultaneously. Because American Sign Language (ASL) uses a different grammar and syntax from English, out of necessity the sign system that is used during SimCom is some form of manually coded English or a form of pidgin sign language. Because other forms of communication are used with children with autism, the total communication approach includes not only speech,

are used with children with autism, the total communication approach includes not only speech, signing, gestures, and written language, but also picture communication and voice output communication devices.

Historical Background TC has been used in some form since the begin-ning of deaf education in the sixteenth century (Evans 1982). It was not until the mid-1800s that an oral-only approach began to take hold of the field of deaf education. In 1880, deaf educators from Europe and the United States met at the International Congress at Milan to discuss the then-current debate over which educational phi-losophy (oral-only or a sign and spoken combined method) should be used. The results of the

phi-losophy (oral-only or a sign and spoken combined method) should be used. The results of the Con-gress at Milan led to a predominately oral-only approach in European countries and in the United States. The purely oral-only approach dominated the field of deaf education until the 1960s when David Denton at the Maryland School for the Deaf developed the idea for the TC approach (Lowenbraun et al. 1980).

In the 1960s, many researchers and educators of the deaf began to question the oral-only methods of teaching due to the alarmingly high numbers of illiterate or barely literate deaf stu-dents (Boatner 1965; Schein and Bushnag 1962; Trybus and Kachmer 1977). Also available at the time was research that focused on the compari-sons of deaf children of hearing parents and deaf children of deaf parents. It was found that deaf children of deaf parents outperformed deaf chil-dren of hearing parents

It was found that deaf children of deaf parents outperformed deaf chil-dren of hearing parents in measures of academic achievement and literacy skills (Quigley 1969; Stevenson 1964). These differences were attrib-uted to the use of American Sign Language among the deaf families.

Both then and now, the total communication approach is not implemented homogenously. Stuckless (1976) was the first to point out that total communication “means different things to different people.” The inclusion of finger spelling to a largely oral-only approach is enough to label some programs TC. On the opposite end of the spectrum, programs that are based primarily on American Sign Language as the language of instruction and include written English label the educational philosophy TC. The

as the language of instruction and include written English label the educational philosophy TC. The following defini-tion of TC was provided in 1976, and it remains the same today. TC is a “philosophy incorporating the appropriate aural, manual, and oral modes of communication in order to ensure effective com-munication with and among hearing impaired per-sons” (Garretson 1976, p. 300). Although not labeled “total communication,” the approach was first used with children with autism in the 1970s.

labeled “total communication,” the approach was first used with children with autism in the 1970s. Carr et al. (1978) were among the first to use sign language with children with ASDs. The use of signs for nonverbal chil-dren with ASDs is still employed widely today. In addition to the use of signs, picture symbols, picture communication boards, and low-tech and high-tech augmentative and alternative communi-cation (AAC) devices are used with children with ASDs, and the approach is also termed

communi-cation (AAC) devices are used with children with ASDs, and the approach is also termed “total communication” because any form or modality of communication is applied.

Rationale or Underlying Theory The rationale for the TC approach has its begin-nings in deaf education. In the 1960s, the attention turned to manual approaches of communication and education due to research that showed a more favorable outcome in literacy skills for children who were either born to deaf parents or who were educated through sign language (Hester 1963; Meadow 1968; Quigley 1969). This finding has been echoed in the literature more recently (Hermans et al. 2008; Strong and Prinz

This finding has been echoed in the literature more recently (Hermans et al. 2008; Strong and Prinz 2000). The basic findings correlate signing ability and reading ability such that those with better signing skills are better readers. It makes sense that those children who are better signers would be in an environment with much sign exposure such as in a household with deaf parents who use ASL. Related to this is a proposal first described by Cummins in 1979 called the linguistic interdependence

to this is a proposal first described by Cummins in 1979 called the linguistic interdependence theory. The theory was originally meant to suggest an adjustment to bilingual edu-cation in a way that would incorporate the basic tenets of the model. Cummins (1979) asserts that the competence that can be achieved in a second language (L2) is dependent on and restricted by the competence individuals have in their first lan-guage (L1). Additionally, children must reach a threshold competency level in

in their first lan-guage (L1). Additionally, children must reach a threshold competency level in their L1 before learning an L2 becomes too cognitively taxing. Although the linguistic interdependence theory was not meant to be applied to deaf children, many see a parallel between the obstacles deaf children face when learning written English and the obstacles a second-language learner faces. Indeed, if a child learns ASL, which is a separate language from English, learning written and spoken

if a child learns ASL, which is a separate language from English, learning written and spoken English is an issue of a bilingual learner.

Regarding individuals with ASDs, the TC approach has been applied due to research that began in the 1970s related to the speech outcomes of children with autism who were taught manual signs. More recently, related to the idea of multi-ple intelligences (Gardner 1993) is the notion that, much like the normally developing population, individuals with ASDs are a heterogeneous group with different strengths and learning styles. Specifically, it has been found that some individ-uals with ASDs have

strengths and learning styles. Specifically, it has been found that some individ-uals with ASDs have differences in the way they process information (Harris et al. 1990; Siegel et al. 1996). Hermelin and O’Conner (1970) were the first to state that some individuals with ASDs process visuospatial information better than auditory information. Additionally, it has been found that the memory of individuals with ASDs is superior for visual information compared to auditory information (Prior and Chen

with ASDs is superior for visual information compared to auditory information (Prior and Chen 1976). Finally, research on the attention of individuals with ASDs supports the notion that they have difficulty selecting the most salient features of a stimulus (Frith and Baron-Cohen 1987). The use of other forms of augmentative com-munication for individuals with ASDs seems log-ical based on the strengths that they possess. The use of sign language relieves the burden of having to process verbal

that they possess. The use of sign language relieves the burden of having to process verbal information and builds on the strength of processing visuospatial information. The memory difficulties of individuals with ASDs can be alleviated by using picture commu-nication symbols which do not require them to rely on their own memories to create a message. Individuals with ASDs can attend to the symbols for as long as necessary to comprehend the infor-mation, alleviating the difficulties related to

for as long as necessary to comprehend the infor-mation, alleviating the difficulties related to atten-tion needed for verbal information transfer. Sign language is seen as a viable option for nonverbal individuals with ASDs due to the ease with which the therapist can physically manipulate the hands for manual articulation compared to manipulating the mouth during speech production.

Goals and Objectives It is estimated that 30–50% of individuals with autism spectrum disorders will not acquire functional speech (National Research Council 2001; Luyster et al. 2005); the goal of the total communication approach is functional commu-nication. Although verbal speech may not be possible for all individuals with autism, com-munication through any means is the ultimate goal.

Treatment Participants Any individual who is unable to communicate to the level expected for their age is a candidate for augmentative and alternative communication of any form (Beukelman and Mirenda 2005). Therefore, because communication impairments are a hallmark of ASDs (Mirenda 2009), many individ-uals with ASDs are candidates for a total commu-nication approach.

Treatment Procedures Because the total communication approach is an eclectic one, there is no one set of procedures to be applied. Typically, whether referring to the use of manual signs or picture communication, the com-mon practice is to begin training a small number of lexical items for requesting highly motivating objects (Beukelman and Mirenda 2005). Once the use of symbolic communication is established, more lexical items are introduced and are used for other communicative acts such as

is established, more lexical items are introduced and are used for other communicative acts such as commenting and questioning.

Beukelman and Mirenda (2005) also support the use of natural consequences when applying AAC solutions to beginning communicators. For example, when using picture symbols to request an item, the language facilitator should provide the item that is requested even if the facilitator knows the request was a mistake or knows that the AAC user does not want the item. Giving the non-preferred item, and allowing for the natural con-sequence, teaches the AAC user that they must pay attention to their

allowing for the natural con-sequence, teaches the AAC user that they must pay attention to their own communicative interac-tions and that they must weight their options carefully.

Efficacy Information Efficacy research in the field of AAC is a rela-tively new addition to the literature. Bedrosian (1999) states that much early research in the field, as it should have been, was devoted to descriptive studies relating to describing the com-munication of AAC users. Since that publication, many more research studies have been conducted that are devoted to the efficacy of AAC for spe-cific populations. Autism is one of those populations that have been widely studied.

of AAC for spe-cific populations. Autism is one of those populations that have been widely studied. Over-whelmingly, the use of AAC has resulted in increased language skills in individuals with ASDs over treatment approaches that focus on speech alone. For most individuals with ASDs, accessing their relative strength in the visual domain has resulted in faster and more complex language growth in both signing and speaking. The use of manual signing in combination with speech training has been

both signing and speaking. The use of manual signing in combination with speech training has been shown to increase lan-guage skill. The use of non-electronic-aided sys-tems such as picture use has also been shown to increase functional communication, and a wide range of individuals with ASDs have been able to make use of this type of communication. High-tech AAC use has been shown to increase lan-guage abilities and speech output in individuals with autism as well. See Goldstein (2002) and

lan-guage abilities and speech output in individuals with autism as well. See Goldstein (2002) and Mirenda (2002) for reviews.

A meta-analysis of available research related to AAC use was conducted by Millar et al. (2006). Although the meta-analysis was not focused only on individuals with autism, the major finding was that use of AAC does “not have a negative impact on speech production” (p. 257), and in fact, speech production increased in individuals ages 2–60 years as a result of AAC interventions and across a range of different AAC interventions (aided and unaided).

Outcome Measurement Because the goal of AAC use is functional communication, the outcome measurement should be the same. Functional communication will be defined differently based on the cognitive skills of the individual and the type of AAC system that is in place.

Qualifications of Treatment Providers AAC interventions are most typically introduced by a speech-language pathologist. Unfortunately, many speech-language pathologists do not report having adequate training or education in the field of AAC (King 1998; Marvin et al. 2003; Simpson et al. 1999), and a survey of education programs for speech-language pathologists has uncovered a need for better education in this area (Ratcliff et al. 2008). Although this is the case, speech-language pathologists

in this area (Ratcliff et al. 2008). Although this is the case, speech-language pathologists are the best equipped of all profes-sionals who work with individuals with autism to provide intervention that includes AAC. A listing of speech-language pathologists who are certified by the American Speech Language Hearing Asso-ciation can be found on their website. A few short questions posed to the speech-language patholo-gist can reveal whether they are comfortable with the area of AAC.

Touch  Touch Pressure Definition Touch pressure is a specific form of touch sensa-tion, recording the amount of push on the recep-tor with the ultimate goal to avoid skin damage. The sensation of touch pressure is detected by skin receptors designed to provide graded infor-mation to the brain through spinal cord path-ways. This touch pressure can be noticed, but if not perceived to be a threat to the integrity of the skin, then no action is taken. Occasionally, the term touch pressure is used

the integrity of the skin, then no action is taken. Occasionally, the term touch pressure is used to refer to the use of therapeutic touch in the form of massage or touch therapy to calm children who are diagnosed with autism.

Touch Processing and Social Behavior in ASD Definition Deficits in sensory functioning were recently rec-ognized under the repetitive behavior criteria for the diagnosis of autism spectrum disorder (ASD) (APA 2013). It is estimated that atypical responses to sensory stimuli are present in 90% of individ-uals diagnosed with ASD (Tavassoli et al. 2014; Tomchek and Dunn 2007), with the sense of touch described by parents as one of the most impaired (Hilton et al. 2010; Lane et al. 2010). Touch is

described by parents as one of the most impaired (Hilton et al. 2010; Lane et al. 2010). Touch is a sensory modality used in the context of affiliative behaviors and social interaction, and some have proposed that it precedes more com-plex forms of social-emotional skill development, such as language or emotional expressiveness (Hertenstein et al. 2006). Touch is important to human social bonding and affect communication because it is a primary channel of communication in the first year of life

and affect communication because it is a primary channel of communication in the first year of life (Gallace and Spence 2010; Morrison et al. 2010). ASD is a disorder charac-terized by a lack of social-emotional reciprocity, and a relationship between the tactile domain and other core symptoms of the disorder, namely, social problems, has been suggested. Specifically, it is hypothesized that aberrant touch processing is a potential precursor to these deficits. Abnormal touch processing in ASD is

touch processing is a potential precursor to these deficits. Abnormal touch processing in ASD is often characterized by abnormal responses to textures, preoccupations with sensory features of objects, or problems habituating to prior sensory experi-ences (Hilton et al. 2010; Lane et al. 2010).

## 15q13.3 Microdeletion Syndrome Christian Patrick Schaaf1 and Madelyn A Gillentine2 1Institute of Human Genetics, Heidelberg University, Heidelberg, Germany 2Department of Genome Sciences, University of Washington, Seattle, WA, USA  ### Synonyms CHRNA7 deletions  ### Definition 15q13.3 microdeletion syndrome (OMIM 612001, DECIPHER coordinates: chr15: 30,901,306-32,445,407, hg19) is the result of heterozygous deletions at chromosome 15q13.3, ranging in size from 350 kb to 3.9 Mb. These

of heterozygous deletions at chromosome 15q13.3, ranging in size from 350 kb to 3.9 Mb. These deletions are mediated by nonallelic homologous recombination (NAHR) between four low copy repeat (LCR) elements: breakpoints (BPs) 3, 4, and 5, as well as the D-CHRNA7-LCR. The most common of these deletions, spanning 1.5 Mb to 2 Mb are mediated by BPs 4 and 5 and encompass six genes: FAN1, MTMR10, TRPM1, KLF13, OTUD7A, and CHRNA7, as well as one micro-RNA: hsa-miR-211. Of these genes, CHRNA7 and

TRPM1, KLF13, OTUD7A, and CHRNA7, as well as one micro-RNA: hsa-miR-211. Of these genes, CHRNA7 and OTUD7A are the top candidate genes (Yin et al. 2018; Gillentine and Schaaf 2015).

The estimated frequency of the most common 15q13.3 microdeletions is 1 in 5525 live births (0.19%) and is estimated to be higher (0.29%) among individuals with intellectual disability and idiopathic generalized epilepsy (1%) (Gillentine et al. 2018). However, these deletions also exhibit incomplete penetrance, with about 20% of individuals not having any diagnosed phenotypes. This contributes to 15q13.3 micro-deletions being de novo (15%) and inherited (85%). Of note, studies have found that a

15q13.3 micro-deletions being de novo (15%) and inherited (85%). Of note, studies have found that a large proportion of 15q13.3 microdeletion probands are adopted; so, while having unknown inheritance, it is likely that these are inherited from affected parents (Ziats et al. 2016).

Individuals carrying 15q13.3 microdeletions have a wide range of phenotypes, including intellectual disability/developmental delay, seizures/epilepsy, autism spectrum disorder (ASD), and schizophrenia (Ziats et al. 2016). In general, probands with 15q13.3 microdeletion syndrome have height, weight, and fronto-occipital circumference within the normal range. Over half of 15q13.3 microdeletion probands exhibit cognitive deficits, with a study of 18 probands finding the average full-scale IQ to be

exhibit cognitive deficits, with a study of 18 probands finding the average full-scale IQ to be 60 (Ziats et al. 2016; Gillentine and Schaaf 2015). The next most prevalent phenotype is seizures/epilepsy, affecting about one third of probands. Language or speech impairments are also common, affecting just under one third of probands. Other neuropsychiatric phenotypes include schizophrenia, ASD or autistic features, ADHD or attention difficulties, and mood disorders in less than 20% of probands

autistic features, ADHD or attention difficulties, and mood disorders in less than 20% of probands each. Abnormal behaviors, including aggression, and impulsiveness have been observed in about a quarter of the cases. Dysmorphic features are pre-sent in about one third of probands, although there is not a consistent pattern of dysmorphia.

While deletions between 1.5 Mb and 2 Mb are the most common, but both larger and smaller deletions are reported with similar clinical phenotypes. Notably, homozygous deletions at 15q13.3 have been reported and are phenotypically more severe, with probands exhibiting neonatal encephalopathy. Additionally, the reciprocal micro-duplication is also pathogenic, with incomplete penetrance as well and a similar range of phenotypes, although typically less severe (Gillentine and Schaaf 2015).

Several hypotheses have been proposed to explain the variable expressivity observed among 15q13.3 microdeletion syndrome probands. These include additional copy number changes and/or single nucleotide variants contrib-uting to phenotypes and epigenetic changes. However, the most prominent hypothesis is the effect of modifier genes, in particular the human-specific fusion gene CHRFAM7A, consisting exons 5 through 10 of CHRNA7 and a sequence of unknown function, FAM7A. The fusion gene is copy

exons 5 through 10 of CHRNA7 and a sequence of unknown function, FAM7A. The fusion gene is copy variable and polymorphic among the population. Functional studies have shown that increasing amounts of CHRFAM7A can contribute to CHRNA7 dysfunction (Ihnatovych et al. 2019).

Currently, there is no consistent treatment for 15q13.3 microdeletion syndrome. CHRNA7, encoding for the α7 nicotinic acetylcholine recep-tor (nAChR), has been suggested as a candidate gene. Dysfunction of the α7 nAChR is supported molecularly, with a decrease of the receptor resulting in decreased calcium flux through the channel (Gillentine et al. 2017). Due to this, α7 agonists and positive allosteric modulators (PAMs) have been suggested as a possible treat-ment and assessed among a few

allosteric modulators (PAMs) have been suggested as a possible treat-ment and assessed among a few individuals with mixed results. One individual carrying a 15q13.3 microdeletion who exhibited recurrent rage outbursts was treated with galantamine, a nAChR allosteric modulator and acetylcholinesterase inhibitor, with positive results, although such drugs are known to have severe side effects (Cubells et al. 2011). Individuals with schizophrenia or autism spectrum disorder have also been treated

et al. 2011). Individuals with schizophrenia or autism spectrum disorder have also been treated with nAChR agonists in small studies with positive, but limited results (Olincy et al. 2016). To date, no large clinical trials have been performed using such compounds.

### See Also *   ▶Angelman/Prader-Willi Locus *   ▶Angelman/Prader-Willi Syndromes *   ▶Cholinergic System *   ▶Chromosomal Abnormalities *   ▶Chromosome 15q11–q13  ## 16p11.2 Stephan Sanders Child Study Center, Yale University, New Haven, CT, USA  ### Definition 16p11.2 refers to a particular region on the short (p) arm of chromosome 16 that corresponds to an approximately 500 kilobase copy number varia-tion (CNV) that is strongly associated with the risk for ASD. The region contains 28 genes

varia-tion (CNV) that is strongly associated with the risk for ASD. The region contains 28 genes and is flanked by segmental duplications (stretches of near-identical DNA). These are known to increase the likelihood of a process known as non-homologous allelic recombination, which can lead to gains or losses of the chromosomal seg-ment flanked by these repeats.

The importance of deletions and duplications at 16p11.2 in ASD was recognized simultaneously by three research groups (Kumar et al. 2008; Marshall et al. 2008; Weiss et al. 2008). These findings have since been replicated multiple times. 16p11.2 CNVs are found in about 1% of individuals with autism, compared with less than 0.1% of the population. CNVs in this region have also been associated with intellectual disability, developmental delay, schizophrenia (duplications only), and obesity

with intellectual disability, developmental delay, schizophrenia (duplications only), and obesity (deletions only) (http://www.ncbi.nlm.nih.gov/books/NBK11167/).

CNVs involving this interval are among the most well-established risk factors for ASD. They also highlight the complexity of the genetic contri-bution to these syndromes: the CNVs are neither necessary (ASD can occur without 16p11.2 CNVs) nor sufficient (ASD is not always present with the CNV) to cause ASD. Both deletions and duplica-tions can contribute to risk, and these variations may either be de novo or transmitted within fami-lies. Moreover, in some families in which one affected child

be de novo or transmitted within fami-lies. Moreover, in some families in which one affected child carries a 16p11.2, there may be other affected family members who do not.

The region contains multiple biologically plausi-ble gene candidates for ASD (see list below). At this time, it is not known whether a single gene is responsible for the ASD phenotype or if a combina-tion of genes within the region accounts for the risk. The genes in the 16p11.2 region are ALDOA, ASPHD1, C16orf53, C16orf54, CDIPT, CORO1A, DOC2A, FAM57B, FLJ25404, GDPD3, HIRIP3, INO80E, KCTD13, LOC100271831, LOC440356, MAPK3, MAZ, MVP, PPP4C, PRRT2, QPRT, SEZ6L2, SLC7A5P1, SPN, TAOK2, TBX6,

LOC100271831, LOC440356, MAPK3, MAZ, MVP, PPP4C, PRRT2, QPRT, SEZ6L2, SLC7A5P1, SPN, TAOK2, TBX6, TMEM219, and YPEL3.

### See Also *   ▶Candidate Genes in Autism *   ▶Chromosomal Abnormalities *   ▶Common Disease-Rare Variant Hypothesis *   ▶Copy Number Variation *   ▶DNA *   ▶Genetics  ## 504 Plan Kate Snyder1, Kara Hume2 and Christi Carnahan1 1University of Cincinnati, Cincinnati, OH, USA 2University of North Carolina, Chapel Hill, NC, USA  ### Definition Section 504 is a regulation of the Rehabilitation Act of 1973 that extends civil rights to individuals with disabilities. Enforced by the Office of Civil

of 1973 that extends civil rights to individuals with disabilities. Enforced by the Office of Civil Rights (OCR) within the US Department of Health and Human Services, Section 504 states that “No otherwise qualified individual with a disability in the United States . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance. . .” (29

to discrimination under any program or activity receiving Federal financial assistance. . .” (29 U.S.C. § 794(a)). Section 504 applies to any organization receiving federal funding; thus, it has important implications for individuals with autism spectrum disorders (ASD) and their participation in various educa-tional, recreational, community, and employment settings.

### Historical Background The Civil Rights Act of 1964 and its prohibition of discrimination based on race, color, or national origin was a catalyst for the development of Section 504 of the 1973 Rehabilitation Act. Senator Hubert Humphrey (D., Minnesota) led the work to add an amendment to the Rehabilitation Act of 1973 that would address the discrimination of individuals with disabilities who had not been included under the Civil Rights Act. Section 504 was the first piece of legislation that

not been included under the Civil Rights Act. Section 504 was the first piece of legislation that specifically addressed the civil rights of individuals with disabilities.

Implementation of Section 504 was wrought with challenges. Initial responsibility for writing implementation regulations was left to the US Department of Health, Education, and Welfare (HEW). Though drafts of the regulations were written as early as 1975 (Pfeiffer 2002), by 1977, the regulations had yet to be signed and implementation of Section 504 had stalled. In response, on April 5, 1977, the American Coali-tion of Citizens with Disabilities (ACCD) led demonstrations in HEW regional offices

American Coali-tion of Citizens with Disabilities (ACCD) led demonstrations in HEW regional offices across the country. These demonstrations and other lob-bying efforts led to the signing of the regulations on April 28, 1977. Delays in the creation of government-wide implementation slowed the pro-cess of issuing regulations within individual fed-eral agencies (National Council on Disability 2003). Each department within the executive branch of the federal government now has its own regulations

Each department within the executive branch of the federal government now has its own regulations for implementing the provisions of Section 504 (Yell 2006).

As the first civil rights legislation for individ-uals with disabilities, Section 504 of the 1973 Rehabilitation Act paved the way for future legis-lation for individuals with disabilities, including the 1990 adoption of the Americans with Disabil-ities Act (ADA) and the Individuals with Disabil-ities Education Act (IDEA). Together, Section 504, ADA, and IDEA protect the rights and equal participation of individuals with dis-abilities in employment, in education, and in the community.

### Current Knowledge  #### Qualification Under Section 504 Section 504 specifically states that to be protected under the law, an individual must be determined to (1) have a physical or mental impairment that substantially limits one or more major life activi-ties, (2) have a record of such an impairment, or (3) be regarded as having such an impairment. Though no exhaustive list of specific “mental or physical impairments” covered by Section 504 exists, regulatory provision 34 C.F.R.

“mental or physical impairments” covered by Section 504 exists, regulatory provision 34 C.F.R. 104.3(j)(2)(i) defines a physical or mental impairment as “any physiological disorder or condition, cos-metic disfigurement, or anatomical loss . . .or any mental or psychological disorder.” Major life activities, as defined by the Section 504 regula-tions at 34 C.F.R. 104.3(j)(2)(ii), include func-tions such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking,

such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. It is important to note that this list is also not considered exhaus-tive, and thus other activities or functions not explicitly stated may be considered “major life activities” under Section 504. Since autism is a brain-based disorder (Wass 2011), individuals with a diagnosis of ASD would “have record” of a “mental impairment” that could potentially qualify them for

of ASD would “have record” of a “mental impairment” that could potentially qualify them for protection under Section 504. Qualification is determined based upon the influence of an individual’s autism on his or her ability to perform a “major life activity.” The characteristics of autism manifest in social interactions, communicative exchanges, and through restricted or stereotyped patterns of behavior, interests, or activities (American Psy-chiatric Association 2000). Though to qualify for

behavior, interests, or activities (American Psy-chiatric Association 2000). Though to qualify for Section 504 each person on the autism spectrum must be evaluated on an individual basis, the disorder could potentially influence many “major life activities.”

#### Application of Section 504 in Education (From Preschool Through Postsecondary)

The provisions of Section 504 extend civil rights to individuals with disabilities to ensure access to activities and programs for which they “otherwise qualify” (29 U.S.C. § 794(a)). In other words, an individual meets program or employment criteria despite his or her disability. Applied to public education, this means that the individual with a disability is of public school age. Schools provid-ing a public education must ensure that students with disabilities have equal opportunity to benefit

a public education must ensure that students with disabilities have equal opportunity to benefit from educational programs and facilities under Section 504 (Yell 2006).

A central component of Section 504 as it applies to public schools is the provision of a free appropriate public education (FAPE). FAPE, as defined by Section 504, requires that a student with a disability be provided with regular or spe-cial education and related aids and services that are designed to meet his or her individual educa-tional needs. These provisions must meet the indi-vidual’s needs as adequately as the needs of students without disabilities are met. Examples relevant to

needs as adequately as the needs of students without disabilities are met. Examples relevant to learners with ASD include using visuals to supplement verbal instruction, provid-ing tape recorders, modifying textbooks, using behavior support techniques such as reinforce-ment, adjusting class schedules, and increasing classroom organization/structure.

Section 504 also requires that all educational programs be accessible to all learners. This does not mean that schools are required to make every room or program accessible to all students but that all learners have equal access to programming. For example, a school may offer multiple sections of a biology lab in three different classrooms. If one of the lab classrooms is accessible and two are not, the school still meets the expectation of Section 504 because the educational program is

are not, the school still meets the expectation of Section 504 because the educational program is accessible to all students. It is not permissible, however, to create a scenario where a dispropor-tionate number of students with disabilities are assigned to the same program or activity because of accessibility issues. Returning to the example of the biology lab, it would not be acceptable for the school to create one section of the lab in which students with disabilities were overrepresented.

This issue of disproportionality, or overrepre-sentation, is related to the FAPE provision within Section 504 that students with disabilities and students without disabilities should be placed in the same setting, to the maximum extent appro-priate to meet the needs of the students with dis-abilities. In addition, students with disabilities may not be excluded from participating in any school activities, including extracurricular pro-grams such as recreational sports or special inter-est

activities, including extracurricular pro-grams such as recreational sports or special inter-est clubs, in which students without disabilities would participate (US Department of Education, Office of Civil Rights 2010).

Section 504 also requires that students with disabilities access programs and services in “com-parable facilities.” In the event that a student with a disability is educated in a separate facility from their peers, a district must ensure that the facility is comparable (i.e., in terms of space, location, size) to the district’s other facilities. Thus, Section 504 protects students with disabilities from the histor-ical practice of establishing special education classrooms in areas not

from the histor-ical practice of establishing special education classrooms in areas not conducive to learning, such as storage rooms or partitioned areas (Yell 2006).

#### Eligibility Determination Since Section 504 and IDEA both protect the rights of individuals with disabilities in public education settings (through age 21), there is often confusion about eligibility requirements. It is important to note that not all students with disabilities who qualify for an individualized plan under Section 504 will meet the requirements for special education under IDEA. However, all students protected by IDEA also qualify for pro-tections under Section 504. One

IDEA. However, all students protected by IDEA also qualify for pro-tections under Section 504. One reason for this distinction is that under IDEA, a disability must have an adverse impact on a student’s learning that requires special education and related ser-vices. If a student does not require specialized instruction as a result of their disability, then he or she would not meet the requirements of IDEA. While IDEA explicitly requires the involvement of special education programming,

of IDEA. While IDEA explicitly requires the involvement of special education programming, implementa-tion of Section 504 is general education responsi-bility (Yell 2006). Essentially, Section 504 provides access to an education (“to and through the schoolhouse door,” Wright and Wright 2008); however, Section 504 includes no guarantee that the individual will receive educational benefit, as specified in IDEA.

In order to determine a student’s eligibility under Section 504, schools are required to follow certain procedural safeguards related to the iden-tification, evaluation, or educational placement of students with a disability (U.S. Department of Education, Office for Civil Rights 2010). An eval-uation must occur if a parent or teacher has referred a student, if a student has a medical diag-nosis, or if a student has missed an excessive number of school days due to illness. Schools must use an

or if a student has missed an excessive number of school days due to illness. Schools must use an evaluation procedure to determine whether a student’s disability (or perceived dis-ability) limits his or her ability to perform a major life activity, but there is no standardized protocol for how this evaluation should take place.

The FAPE provision requires that once stu-dents have been evaluated and determined to meet the criteria for Section 504, school teams must develop an individualized plan that outlines how services and accommodations will be pro-vided. Many students who meet the criteria of Section 504 are also protected under IDEA. These students will therefore have an individual-ized education program (IEP) that will also con-stitute their written plan. If a student’s educational needs can be met with

that will also con-stitute their written plan. If a student’s educational needs can be met with accommodations and related services that do not include specialized instruction, they do not typically qualify for spe-cial education. These students have only a Section 504 plan that reflects their needs. Finally, a number of rights and safeguards provided by IDEA are not similarly provided to individuals under Section 504, including prior written notice, rights to independent educational

to individuals under Section 504, including prior written notice, rights to independent educational evaluations, and protections from permanent expulsion.

#### Overview of major differences between Section 504 and IDEA  | Section 504 | IDEA | |---|---| | **Eligibility** | Individuals must qualify under the broad definition: (1) have a physical or mental impairment that substantially limits one or more major life activities, (2) have a record of such an impairment, or (3) be regarded as having such an impairment. Need for special education is not a requirement | Students (aged 3–21) must qualify under one of the fourteen disability categories;

a requirement | Students (aged 3–21) must qualify under one of the fourteen disability categories; students must demonstrate need for special education services |

| **Major provisions** | No otherwise qualified individual with disability shall solely by reason of his or her disability be: • Excluded from participation in • Denied the benefits of • • Be subjected to discrimination under any program or activity receiving federal financial assistance | Procedural safeguards and the right to free appropriate public education in the least restrictive environment as defined by IDEA |

| **Funding** | No funding provided for Section 504 | Both state and federal funding |
| **Overall responsibility** | Local education agency (LEA); general education | State education agency (SEA); special education |

#### Application in Postsecondary Education Any postsecondary institution that receives fed-eral funding is required to apply the regulations of Section 504 for qualifying individuals. Qualifying individuals at the postsecondary education level are those individuals with a disability who also meet the academic or technical standards that are required for admission by the institution. Individ-uals must also meet the participation requirements for the institution’s activity or program. FAPE does

must also meet the participation requirements for the institution’s activity or program. FAPE does not apply to postsecondary educational set-tings; instead, institutions are required to provide “appropriate academic adjustments and auxiliary aids and services that are necessary to afford an individual with a disability an equal opportunity to participate in a school’s program” (US Department of Education, Office of Civil Rights 2011). The accommodations and services provided by a postsecondary

Education, Office of Civil Rights 2011). The accommodations and services provided by a postsecondary institution should not alter the individual’s program in a fundamen-tal way nor should they create an “undue burden” on the institution.

Individuals with autism who meet the require-ments for Section 504 while in elementary or secondary education should recognize that they might not receive the same services or accommodations at the postsecondary level. For example, some individuals with autism may be provided support from an educational assistant while in high school. Postsecondary institutions are not required to provide the same service because it may result in an undue financial burden to the institution (US Department of

same service because it may result in an undue financial burden to the institution (US Department of Education, Office of Civil Rights 2007). Another difference in provisions at the postsecondary level is the shift in responsibility. At the elementary and secondary school level, school districts are required to iden-tify, evaluate, and ensure services for an individ-ual with a disability under Section 504. At the postsecondary level, individuals must disclose their disability to the university

504. At the postsecondary level, individuals must disclose their disability to the university and follow the institution’s procedures for requesting academic adjustments. Individuals with ASD must be pre-pared to discuss their individual needs when trans-itioning to the postsecondary education setting (Adreon and Durocher 2007).

#### Application in Employment Settings Any employer who receives federal funding must also fulfill the mandates of Section 504 that pro-tect qualified individuals with a disability. The disability criterion for protection under Section 504 in an employment setting is the same as in educational settings; however, the def-inition of “qualified” is changed. For the purposes of employment, in order to be “qualified” an indi-vidual with a disability must be able to perform the essential function of

to be “qualified” an indi-vidual with a disability must be able to perform the essential function of the job with reasonable accommodation (US Department of Health and Human Services, Office of Civil Rights 2006). An employer is required to take steps to accom-modate an employee’s disability unless doing so would cause an undue burden to the employer.

Workplace accommodations for individuals with disabilities are somewhat intuitive in certain situations (i.e., providing a sign language inter-preter for an individual who is deaf or an access ramp for an individual with a physical disability). Workplace accommodations can sometimes be less obvious in the case of an individual with ASD but are no less important in ensuring the individual’s success in the workplace. Accommo-dations for individuals with autism in the work-place could include

in the workplace. Accommo-dations for individuals with autism in the work-place could include minor modifications to work materials or physical changes in the workplace that make the position more accessible. For exam-ple, an employer could make the reasonable accommodation of providing a quieter workspace that reduces distractions if such a change would be an appropriate accommodation for the individual with autism.

### Future Directions  #### Increased Prevalence A recent prevalence study estimated that 2–3% (1:38) of the total school-age population have an autism spectrum disorder (Kim et al. 2011). Many of these students are served in the general educa-tion setting (i.e., two-thirds of the sample in the Kim et al. study, 2011) and may not qualify for services under IDEA. This increases the likeli-hood that individuals with ASD will receive pro-tections under Section 504, which has vast implications for

individuals with ASD will receive pro-tections under Section 504, which has vast implications for school staff. This resurgence in 504 cases will require that school staff is adept in identifying and implementing appropriate accom-modations and modifications for students with ASD – likely requiring additional staff training and expertise. In addition, an increase in litigation around 504 protections is expected as families and schools struggle to identify what accommodations and auxiliary aids

is expected as families and schools struggle to identify what accommodations and auxiliary aids are required. For example, Section 504 does not mandate specific education programs or models nor does it require that stu-dents with ASD receive individualized instruction in specialized settings (Katsiyannis and Reid 1999). As this population ages, the demand for Section 504 protections at postsecondary settings, including universities, community colleges, and trade schools, will likely also

settings, including universities, community colleges, and trade schools, will likely also increase. The resources required to implement these plans, both human resources and financial resources, may create new challenges for these institutions. Finally, employers will likely face similar chal-lenges in supporting employees on the autism spectrum protected by Section 504.

#### Technology The use of personal and portable technology with individuals with ASD is on the rise (e.g., iPad, iPod, personal digital assistants, communication devices) (Mechling et al. 2009). These tools are often used to support processing, communication, self-management, self-care, independent func-tioning, and other “major life activities” (e.g., learning and working, per Section 504). It is not clear, however, whether provisions in Section 504 provide for the procurement/use of these

is not clear, however, whether provisions in Section 504 provide for the procurement/use of these devices, and this ambiguity is likely to be discussed and debated in upcoming years. Though Section 504 requires that auxiliary aids such as technology are provided to individuals with specific disabilities (i.e., hearing or vision impairments) at no addi-tional cost, there is no mention of such supports for individuals with broader developmental delays such as ASD or communication impair-ments as

for individuals with broader developmental delays such as ASD or communication impair-ments as result of such delays. The fact that no funding is allocated to school districts, post-secondary institutions, or workplaces in associa-tion with Section 504 may further complicate the issue of providing technological supports for indi-viduals with ASD.

#### Social Skills Instruction Similar questions are likely to arise around the issue of social skills instruction. Because socializing and/or social functioning is described as one of the major life activities under Section 504, accommo-dations and modifications in this area are recommended for individuals with ASD (Bellini et al. 2007). These may include peer-mediated strat-egies, direct social skills instruction, behavioral modification, self-management, and/or other evidence-based social

skills instruction, behavioral modification, self-management, and/or other evidence-based social skill strategies. Currently, however, the state of social skills instruction for individuals with ASD who do qualify under IDEA is bleak (Bellini et al.), and little is known about the status of this type of instruction for those who are protected under Section 504. It is safe to assume that services for this population would not exceed that of those who qualify under IDEA and likely also safe to

for this population would not exceed that of those who qualify under IDEA and likely also safe to assume that social skills services for the 504 protected group are close to nonexistent. As discussed above, as this population continues to increase, particularly a higher functioning group of students who may not receive services under IDEA, an increased focus on this type of instruction will fall to those implementing Section 504 plans.

### See Also *   ▶Academic Supports *   ▶Americans with Disabilities Act *   ▶Employment *   ▶Individual Education Plan *   ▶Individuals with Disabilities Education Act (IDEA) *   ▶Toilet Training  ## 7q11.23 Duplications Stephan Sanders Child Study Center, Yale University, New Haven, CT, USA  ### Synonyms Williams-Beuren region duplication  ### Definition 7q11.23 duplications are copy number variations (CNVs) in which an extra copy of 1,400 kb of DNA from the long arm of chromosome 7 is

variations (CNVs) in which an extra copy of 1,400 kb of DNA from the long arm of chromosome 7 is pre-sent. Duplications in this region are associated with “non-syndromic” ASD (Sanders et al. 2011). The region contains 26 genes, listed below, and is flanked by two segmental duplications (stretches of near-identical DNA). These are known to increase the likelihood of a process known as non-homologous allelic recombination, which can lead to gains or losses of the chromosomal segment flanked by

allelic recombination, which can lead to gains or losses of the chromosomal segment flanked by these repeats and account for the com-mon breakpoints seen in the vast majority of indi-viduals carrying duplications in this region.

7q11.23 duplications have also been seen in combination with intellectual disability, speech delay, and car-diac malformations (http://www.omim.org/entry/609757?search¼7q11.23&highlight¼7q1123). Reciprocal deletions at 7q11.23 cause Williams-Beuren syndrome characterized by dis-tinctive facial features, supravalvular aortic stenosis, and intellectual disability (http://www.omim.org/entry/194050?search¼7q11.23&highlight¼7q1123). Of note, these individuals also are known for highly sociable

Of note, these individuals also are known for highly sociable personalities. The distinctive phenotypes resulting from opposite changes in the number of copies of this region raise the intriguing possibility that the level of expression of a gene, or genes, within the 7q11.23 region plays a key role in the develop-ment and/or functioning of the social brain.

The genes in the 7q11.23 region are ABHD11, BAZ1B, BCL7B, CLDN3, CLDN4, CLIP2, DNAJC30, EIF4H, ELN, FKBP6, FZD9, GTF2I, GTF2IRD1, LAT2, LIMK1, MLXIPL, NSUN5, RFC2, STX1A, TBL2, TRIM50, VPS37D, WBSCR22, WBSCR26, WBSCR27, and WBSCR28.

### See Also *   ▶Candidate Genes in Autism *   ▶Chromosomal Abnormalities *   ▶Common Disease-Rare Variant Hypothesis *   ▶Copy Number Variation *   ▶DNA *   ▶Genetics  ## AACAP Fred R. Volkmar Child Study Center, Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology, Yale Child Study Center, School of Medicine, Yale University, New Haven, CT, USA

### Synonyms AACAP practice parameters  ### Definition One of the first comprehensive guidelines to care of individuals with autism and related disorder, the Practice Parameters of the American Academy of Child and Adolescent Psychiatry first appears in 1999 (Volkmar et al. 1999) with recommenda-tions for ascertainment and screening, diagnosis, and clinical care. The second version (Volkmar et al. 2014) appeared 15 years later and provided updated guidance for practioners. The original version

2014) appeared 15 years later and provided updated guidance for practioners. The original version synthesized available evidence in making recommendations for care anticipating some of the findings and recommendations made by the National Research Council 2 years later (National Research Council 2001).

The initial version was intended to aide in the diagnosis and care and treatment of individuals with autism and related disorder. It provided an overview of the assessment and treatment recom-mendations with an emphasis on evidence-based treatment practices based on available scientific research. It also noted the need for involvement of multiple care providers with attendant issues of care coordination and so forth.

The second version was updated to reflect the considerable advances in research – particularly treatment research and practice. It focused more specifically on the strength of evidence available in support to the various recommendations in the decade and a half since the first version appeared. The second version explicitly differed in that it explicitly noted the strength of the rec-ommendation – ranging from clinical standard (rigorous evidence), clinical guideline (strong evi-dence), and

– ranging from clinical standard (rigorous evidence), clinical guideline (strong evi-dence), and clinical option (some but weak or emerging evidence) and not endorsed for treat-ments that appeared to have no little efficacy based on available research. Explicit distinctions were made based on the strength of the evidence ranging from randomized clinical controlled trials, controlled trials with nonrandomized assignment, uncontrolled trials, and case reports. Issues like care coordination and

nonrandomized assignment, uncontrolled trials, and case reports. Issues like care coordination and co-morbidity were also explicitly discussed. Many of the recommendations made were also consistent with the use of the medical home model of care (Hyman and Johnson 2012).

These practice guidelines have many similari-ties and a few differences from other official guidelines, e.g., relative to issues of screening and early diagnosis; this guideline recommends early screen and encourages early diagnosis while others do not (see, Wilson et al. 2014; McClure 2014, for a discussion). Differences often largely come from the standards for levels of scientific evidence explicitly adopted by the formulators. As with all such official guides to care, rec-ommendations should

adopted by the formulators. As with all such official guides to care, rec-ommendations should be evaluated in light of current research and practice and the circum-stances of the individual case. With that, caveat attempts of this kind are most welcome as they provide clinical guidance for a range of care providers and provide basic recommendations for care.

### See Also *   ▶Medical Home and ASD *   ▶National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia

*   ▶Screening Measures *   ▶Sign Language  ## Aarskog Syndrome Marc B. Taub Southern College of Optometry, Memphis, TN, USA  ### Synonyms Aarskog-Scott syndrome; Faciogenital dysplasia  ### Definition Aarskog syndrome was first reported in 1970 by Aarskog in a seven-patient case series. The syn-drome is characterized by short stature with peculiar facies, “shawl” scrotum (the scrotal folds encircle the penis ventrally), cryptorchidism (the testis fails to descend into its normal position in the

the penis ventrally), cryptorchidism (the testis fails to descend into its normal position in the scrotum), and abnormalities of the hands and feet (Aarskog 1970). Aarskog syndrome can be inherited as an X-linked disorder caused by FGD1 mutations (Xu et al. 2010; Volter et al. 2014) or possibly in an autosomal dominant or recessive pattern (Xu et al. 2010). Population surveys estimate that Aarskog occurs in approximately 1 per million in the general population (Gorski et al. 2000). Intelligence

occurs in approximately 1 per million in the general population (Gorski et al. 2000). Intelligence ranges from normal to mild mental retardation. A normal IQ distribution has been found (Pilozzi-Edwards et al. 2011). Mild learn-ing difficulties and attention deficit hyperactivity disorder have been reported (Pilozzi-Edmonds et al.). Comorbidity has been documented with autism (Schwartz et al. 2000).

Birth size is often normal. Alterations occur when individuals are 2–4 years old (Shalev et al. 2006). Until puberty, most patients are short with height at or below the third “centile.” Puberty is often delayed, but these patients do display a growth spurt in the late teens resulting in adult height in the low-to-normal range. Final height is around the 10th “centile.” Serum growth hormone levels are reported as normal and treatment with growth hormone is ineffective. Spina bifida occulta,

are reported as normal and treatment with growth hormone is ineffective. Spina bifida occulta, cervical spine abnormalities, and scoliosis have been documented (Taub and Stanton 2008).

The nose is often described as short and stubby, with a broad nasal bridge and anteversion of the nostrils. The ears are low set and protuber-ant. They are fleshy superiorly and referred to as “jug-handle ears.” Maxillary hypoplasia and dental malocclusion has been reported as well as a transverse crease below the lower lip (Taub and Stanton 2008). Associated ophth-almic conditions include hypertelorism, tele-canthus, blepharoptosis, and antimongoloid (downward) obliquity of the palpebral

tele-canthus, blepharoptosis, and antimongoloid (downward) obliquity of the palpebral fissures. Ophthalmoplegia, strabismus, hyperopic astigma-tism, retinal vessel tortuosity, nystagmus, and Brown’s syndrome have also been reported.

The hands and feet are affected by this condition in several ways. The hands are often short and broad with mild syndactyly (interdigital webbing) and/or brachydactyly (shortness in comparison to the other bones and body parts). Hyperextensible joints with concomitant flexion of the distal joints (-a hallmark sign), single palmer creases, and short medially incurved fifth fingers are also found. The feet are broad and flat with metatarsus versus short, splayed bulbous toes (Taub and Stanton 2008).

Genital anomalies include a “shawl” scrotum, bilateral or unilateral cryptorchidism, and macro-orchidism (abnormally large testes). Inguinal her-nia (a condition in which part of the intestine bulges through a weak area in muscles in the abdomen, specifically the groin) has been found in association with the syndrome. No characteris-tic anomaly has been documented in females (Taub and Stanton 2008).

There are no specific therapies for Aarskog syndrome. Some features may require surgical intervention (Orrico et al. 2007).
 ### See Also *   ▶Genetics *   ▶Strabismus  ## Aberrant Behavior Checklist Cristan Farmer1 and Michael G. Aman2 1The National Institute of Mental Health (NIMH), National Institutes of Health (NIH), Bethesda, MD, USA

2Nisonger Center, UCEDD, The Ohio State University, Columbus, OH, USA  ### Abbreviations ASD Autism spectrum disorder DD Developmental disability  ### Synonyms ABC; ABC-C; ABC-R; Aberrant behavior checklist – community; Aberrant behavior checklist – residential

### Description The Aberrant Behavior Checklist (ABC) is an informant rating instrument that was empirically derived by principal component analysis (Aman et al. 1985a). It contains 58 items that resolve onto five subscales. The subscales and the respective number of items are as follows: (a) Irritability (15 items), (b) Social Withdrawal (16 items), (c) Stereotypic Behavior (7 items), (d) Hyperactivity/Noncompliance (16 items), and (e) Inappropriate Speech (4 items). A total score for this

(16 items), and (e) Inappropriate Speech (4 items). A total score for this instrument was not psychometrically derived and is not valid. The ABC was designed to be completed by any adult who knows the client well. This could be a parent, teacher, workshop supervisor, case worker, or informants in other roles. Depending upon reading ability, completion time varies, but most raters complete the ABC in 10–15 min the first time. Thereafter, rating times usually decline.

A revised version of the ABC was published in 2017, along with a detailed manual (Aman and Singh 2017) and freely available annotated bibli-ography (https://psychmed.osu.edu/index.php/instrument-resources). With respect to the actual content of the scale, although the wording of a handful of items was generalized (e.g., references to “the ward” and “patients” have been altered), the meaning of all items remains the same as in the original version. Subscale titles similarly underwent slight

all items remains the same as in the original version. Subscale titles similarly underwent slight changes; “Irritability, Agitation, Crying” is now entitled Irritability and “Lethargy, Social Withdrawal” is now Social Withdrawal. Finally, substantive changes to the face sheet were undertaken in an effort to create more usable data. More general terms for school and other set-tings were used to facilitate comparison, as such terms are variable over time and across geographic location. Rather

facilitate comparison, as such terms are variable over time and across geographic location. Rather than querying individual diagno-ses, the face sheet now requests explanations and, where relevant, severity about various conditions that might impact behavior (e.g., sensory or physi-cal impairments, developmental disabilities, medi-cal diagnoses). The remainder of the face page is unchanged from the previous version; the rater is asked to provide the client’s sex, date of birth, and the rater’s

previous version; the rater is asked to provide the client’s sex, date of birth, and the rater’s relationship to the client, and a listing of any medicines being used by the client. In the context of treatment studies, this information (other than the subject’s name and date) is often not collected.

Instructions for completing the ABC and its 58 items are found on the second page of the instrument. The period over which informants rate the client defaults to 4 weeks. However, depending on the clinical or research needs, this period can be increased or decreased. The instructions ask the informant to rate the client on a scale ranging from 0 (not at all a problem) to 3 (the problem is severe in degree). Further, the instructions ask raters to take relative frequency into account, such that

in degree). Further, the instructions ask raters to take relative frequency into account, such that if a given behavior occurs more than the client’s reference group (e.g., other children of the same age and sex), scores greater than or equal to 1 are warranted. The instructions also encourage informants to consider observa-tions and reports of other responsible adults who know the client well when making their ratings. Finally, the instructions indicate that behaviors which interfere with the

making their ratings. Finally, the instructions indicate that behaviors which interfere with the client’s development, functioning, and/or social relationships should be rated as a problem, even if these behaviors do not interfere with other people around the client. The 58 behavior items consume about 1½ pages of the form.

Initially, the ABC was developed primarily as a measure of treatment effects, especially as an out-come measure for pharmacological intervention. With time, the use of the ABC has expanded, and it has been employed, fairly frequently, for the following applications: (a) to examine psycho-metric characteristics of other instruments and/or the ABC itself, (b) to study the behavioral pheno-types of individuals with genetic and metabolic conditions, (c) to examine the effects of different

of individuals with genetic and metabolic conditions, (c) to examine the effects of different environmental variables (e.g., size of housing arrangements) on behavior, (d) to characterize the composition of subjects within studies and/or programs, (e) to assess the effects of sleep disrup-tion on client behavior, (f) to characterize individ-uals with different types of psychiatric disorders, and (g) to evaluate quality of life.

There are at least 35 languages into which it has been translated, including the following: Afrikaans, Arabic, Chinese, Czech, Danish, Dutch, Filipino, Finnish, French (Belgian, Canadian, and European), German, Greek, Hebrew, Hungarian, Indonesian, Italian, Japanese, Korean, Lithuanian, Norwegian, Persian (Farsi), Polish, Portuguese, Romanian, Russian, Serbian, Slovak, Slovenian, Spanish (Colombian, Mexican, Spanish, and USA), Swedish, Thai, Turkish, Telugu (regional language of Andhra

(Colombian, Mexican, Spanish, and USA), Swedish, Thai, Turkish, Telugu (regional language of Andhra Pradesh, India), Ukrainian, Urdu, Vietnamese, and Zulu. At the time of this writing, the following language translations were revised for compatibility with the 2017 ABC revi-sion: Afrikaans, Arabic, Canadian French, Euro-pean French, Chinese (Traditional), English (USA), Filipino, Hebrew, Kannada, Korean, Nor-wegian, Polish, Portuguese, Russian, Spanish (Spain and USA), and Urdu.

In 2017, a single manual for the community and residential versions of the ABC replaced pre-vious separate versions (Aman and Singh 1986, 1994). This new manual addresses an array of subjects not covered in the original manuals, including sections on giving instructions to raters, practices to avoid, and using the ABC for charac-terizing change at the individual and group levels. The ABC-Second Edition Community/Residen-tial Manual (Aman and Singh 2017) gives the history of the ABC’s

Edition Community/Residen-tial Manual (Aman and Singh 2017) gives the history of the ABC’s development and elaborates upon the meanings of all 58 items. Average sub-scale scores and standard deviations (normative data) are provided for adults, sourced from devel-opmental centers in the United States and New Zealand. Normative data for teacher ratings of children and adolescents in special educational classes are provided in the following formats: (a) T-scores and percentiles by sex and age, (b)

classes are provided in the following formats: (a) T-scores and percentiles by sex and age, (b) T-scores with all ages and sexes combined, and (c) means and standard deviations broken out by age and sex, as well as collapsed across all ages. The group home norms are presented in the following ways: (a) T-scores and percentiles by age (10-year groupings) and functional levels (mild, moderate, severe, and profound intellectual disability); (b) T-scores and percentiles collapsed across functional

and profound intellectual disability); (b) T-scores and percentiles collapsed across functional level, summarized for age alone and for sex alone; and (c) means and standard deviations broken out by combinations of func-tional level and age and summarized by sex alone. Normative data for parent ratings of children and adolescents with intellectual disability are pro-vided as means and standard deviations broken out by age and sex. The manual is also a compre-hensive source for information on

deviations broken out by age and sex. The manual is also a compre-hensive source for information on studies of the psychometric properties of the ABC, including internal consistency, interrater reliability, test-retest reliability, criterion group validity, concurrent and discriminant validity, and corre-spondence of ratings with direct observation scores. We summarize some of the information contained in the manual herein. There have been about 450 scientific studies conducted with the ABC,

contained in the manual herein. There have been about 450 scientific studies conducted with the ABC, providing a rich literature against which new work can be compared.

### Historical Background The development of the ABC grew out of a prac-tical need for an instrument to assess treatment effects in people with DD (e.g., Singh and Aman 1981). Development of the ABC was closely modeled on the Behavior Problem Checklist of Quay and Peterson (Quay 1977) and the enor-mously popular Conners’ Parent and Teacher Rat-ing Scales (Conners 1969, 1970). The initial form of the ABC contained 125 items, developed after a review of residential center case records, a survey

the ABC contained 125 items, developed after a review of residential center case records, a survey of existing instruments, and consultation with direct care staff regarding content and wording. A pilot study obtained ratings from caregivers of 418 adolescents and adults with DDs. Items endorsed for fewer than 10% of subjects were dropped, and a principal factoring method was conducted with oblique rotation, leaving 76 items. The intermediate 76-item scale was then used to rate a new group of

rotation, leaving 76 items. The intermediate 76-item scale was then used to rate a new group of 509 adolescents and adults. The data from both samples were analyzed independently by a principal factoring method followed by oblique rotation. A five-factor solu-tion seemed most interpretable in both analyses. Items that failed to load on the same respective factors across analyses were deleted, leaving 58 items in the ultimate ABC.

Two important subsequent changes took place more or less simultaneously. First, the original ABC contained some language that was distinctly institutional in flavor (e.g., “excessively active on the ward”). This language was modified in the early 1990s (e.g., “excessively active at home, school, work, or elsewhere”) to form what was then called the ABC-community. At about the same time, investigators assessed the ABC in child samples and found that the original factor structure was maintained

assessed the ABC in child samples and found that the original factor structure was maintained for children and adoles-cents (e.g., Marshburn and Aman 1992; Brown et al. 2002). The earlier version of the ABC was dubbed the ABC-Residential to distinguish it from the newer ABC-Community. Thus, at this stage, there were residential and community ver-sions available, and the Community version’s structure was validated for children, adolescents, and adults.

With time, the ABC came to be used more and more in pharmacological research involving peo-ple with intellectual disability and/or autism spec-trum disorders (ASDs). Other uses are described under Clinical Uses, below. Much of the published research with the ABC can be accessed through the Annotated Bibliography on the ABC (Aman 2015; available at http://psychmed.osu.edu/resources.htm). One important development was the adoption of the ABC’s Irritability sub-scale as the primary outcome

important development was the adoption of the ABC’s Irritability sub-scale as the primary outcome measure by the Research Units on Pediatric Psychopharmacology (RUPP et al. 2002, 2005), a network of experi-enced psychopharmacology laboratories funded by the US National Institute of Mental Health. In two studies, the RUPP network showed that ris-peridone was highly effective in reducing agitated and irritable behavior for children and adolescents with autistic disorder chosen for high initial

and irritable behavior for children and adolescents with autistic disorder chosen for high initial scores on the Irritability subscale. Using data from these pivotal investigations and from another clinical trial, Johnson & Johnson Pharmaceuticals obtained a clinical indication from the United States Food and Drug Administration for the use of risperidone in children and adolescents with autism and significant agitation and irritability. At that point, it was the only medication approved by the

significant agitation and irritability. At that point, it was the only medication approved by the FDA for treating patients with autism.

Subsequently, Bristol-Myers Squibb Company launched two pivotal clinical trials of aripiprazole in children and adolescents with autism and agi-tated/irritable behavior, again with the ABC Irri-tability subscale as the primary outcome measure. Bristol-Myers Squibb was also able to obtain a clinical indication for its product. These developments have made the ABC a popular choice as an outcome measure for the pharmaceutical industry when targeting behavior problems in patients with DD. However,

for the pharmaceutical industry when targeting behavior problems in patients with DD. However, it is important to realize that individual academic investigators were using the ABC long before it was adopted as an outcome by industry. In 2015, Bearss et al. published an experiment showing that psychosocial training, administered by par-ents of children with autism spectrum disorder, was highly effective in reducing disruptive behav-ior in the children as assessed by parent ratings on the

effective in reducing disruptive behav-ior in the children as assessed by parent ratings on the Irritability subscale of the ABC. It seems probable that the ABC will be used widely in future to assess the impact of psychosocial treat-ments in children with DDs. As noted under Clin-ical Uses, below, the ABC has been used for approximately 450 pharmacological and non-pharmacological purposes over the last 30+ years.

### Psychometric Data There is a wealth of psychometric data on the ABC.  #### Construct Validity There have been several independent factor analyses with the ABC which have supported its construct validity (a) across versions of the ABC, (b) across settings (large residential vs. small, within the community), and (c) across age groups. Most of these studies have been referenced and summarized in the Annotated Bibliography on the ABC (Aman 2015; freely available at

referenced and summarized in the Annotated Bibliography on the ABC (Aman 2015; freely available at http://psychmed.osu.edu/resources.htm), and they are summarized in Table 1.

As shown in Table 1, all studies of construct validity essentially verify the ABC factor structure as described in the original report (Aman et al. 1985a). Two studies failed to find the Inappropriate Speech factor in children, possibly because of a lack of participants with ASDs; it is worth noting that a very large study (n ¼ 1,893) of children with ASD demonstrated excellent support for the original fac-tor structure (Kaat et al. 2014). One study (Brinkley et al. 2007) found significant

original fac-tor structure (Kaat et al. 2014). One study (Brinkley et al. 2007) found significant changes to the Irrita-bility factor when subjects with high rates of self-injury (SIB) were included, but the factor structure was confirmed when these subjects were excluded.

#### Other Forms of Validity The original ABC development study included several validity com-parisons (Aman et al. 1985b). Concurrent validity was established through moderate correlations with existing standardized scales (e.g., the AAMD Adaptive Behavior Scale), and compari-sons of criterion groups yielded predictable pat-terns of difference (e.g., individuals who attended formal training activities received lower subscale scores than those who did not). Further, direct observations of the

received lower subscale scores than those who did not). Further, direct observations of the individuals in their residences were well-correlated with ABC scores. Finally, compared to unmedicated individuals, those prescribed psychotropic medications had signifi-cantly higher ABC scores on all domains except Repetitive Speech.

Subsequently, numerous studies have demonstrated the validity of the ABC, and the manual cites about 35 studies addressing validity. Examples of this include concurrent validity between the ABC and other formal instruments, including (a) the Psychopathology Instrument for Mentally Retarded Adults, (b) the Nisonger Child Behavior Rating Form, (c) Conners’ Teacher Rat-ing Scale, (d) Diagnostic Assessment for the Severely Handicapped-II, (e) Reiss Screen for Maladaptive Behavior, (f) Stereotyped

for the Severely Handicapped-II, (e) Reiss Screen for Maladaptive Behavior, (f) Stereotyped Behavior Scale, (g) Teacher Report Form, and (h) The ADD-H Comprehensive Teacher’s Rating Scale.

#### Reliability Assessments Many researchers, especially those who conducted factor analysis with the ABC, reported alpha coefficients – a mea-sure of internal consistency. Generally, coefficient alpha ranged from the low 0.80s to the middle 0.90s, indicating a high level of consistency.

#### Interrater Reliability Many of the studies that examined cross-informant reliability are summa-rized in Table 2. These generally fell into the low 0.50s to high 0.60s range, which is quite adequate for both research and clinical practice. Using criteria established by Cicchetti and Sparrow (1981), these reliabilities fall into the fair to good ranges.
 ##### Aberrant Behavior Checklist, Table 1 Studies of the construct validity of the ABC

##### Aberrant Behavior Checklist, Table 1 Studies of the construct validity of the ABC
 | Authors | Residential/ community children/adults | Number of factors | % of items on same factor (mean factor loading) | Coefficient of congruence (mdn) |
|---|---|---|---|---| | Aman et al. (1987a) | Res, Adults | 5 (Same) | 86% (0.58) | 0.88–0.96 (0.94) |

| Newton and Sturmey (1988) | Res, Adults | 5 (Same) | 78% and 81%a | NR | | Bihm and Poindexter (1991) | Res, Adults | 5 (Same) | NR | NR | | Freund and Reiss (1991) | Comm, Childr | 5 (Same) (parent) | 91% | 0.88–0.82 (0.86) |
| | Comm, Childr | 5 (Same) (teacher) | 80% | 0.65–0.91 (0.81) | | Rojahn and Helsel (1991) | Res, Childr | 5 (Same) | NR | 0.80–0.89 (0.82) | | Marshburn and Aman (1992) | Comm, Childr | 4 (1–4 Same) | 84% (0.65) | 0.87–0.96 (0.90) |

| Aman et al. (1995) | Comm, Adults | 5 (Same) | 95% (0.59) | 0.84–0.97 (0.90) |
| Ono (1996) | Res, Childr/Adults | 5 (Same) | 83% | NR | | Siegfrid (2000) | Comm, Adults | 5 (Same) | 84% (0.69) | NR | | Brown et al. (2002) | Comm, Childr | 4 (1–4 Same) | 71% (0.51) | 0.62–0.91 (0.85) |
| Brinkley et al. (2007) | Comm, Childr | 5 (Same for low SIB subjects) | 78% | NR |

| | | 4 (Subscales 2–5 same for high SIB subjects) | 60% | NR | | Sansone et al. (2012) | Comm, Childr/ Adults | 6 (1–5 same) | 76% | NR | | Kaat et al. (2014) | Comm, Childr | 5 (Same) | 90% | NR | | Wheeler et al. (2014) | Comm, Childr/ Adults | 5 (Same) | 97% | NR | | Same, same factor composition; NR, not reported; mdn, median value | | | | | | aUsing ordinal and dichotomous coding (absent/present), respectively | | | | |

| bSpearman correlation coefficients | | | | | | cIntraclass correlation coefficients | | | | |  ##### Aberrant Behavior Checklist, Table 2 Summary of interrater reliability studies with the ABC
 | Authors | Sample size | Ages of subjects | Correlation range | Median correlation |

|---|---|---|---|---| | Aman et al. (1985b) | (a) 35 | Adults | 0.54–0.67 | 0.59 | | | (b) 40 | Adults | 0.51–0.88 | 0.71 | | Aman et al. (1987b) | (a) 28 | Adults | 0.52–0.74 | 0.60 | | | (b) 28 | Adults | 0.40–0.66 | 0.59 | | Freund and Reiss (1991)a | 94? | Children | 0.39–0.49b | 0.45b | | Rojahn and Helsel (1991) | 130 | Children/Adolescents | 0.39–0.61 | 0.49 | | Ono (1996) | 33 | Children/Adults | 0.58–0.78b | 0.68 | | Schroeder et al. (1997) | 30 | Adults | 0.12–0.53 | 0.45 | | Siegfrid

| 0.58–0.78b | 0.68 | | Schroeder et al. (1997) | 30 | Adults | 0.12–0.53 | 0.45 | | Siegfrid (2000)c | 90 | Adults | 0.67–0.90 | 0.73 | | Miller et al. (2004) | 22 | Children | 0.72–0.80 | NR | | All references can be found in Annotated Bibliography on the ABC (Aman 2015). Unless indicated otherwise, all correlations were Pearson correlation coefficients. Unless coded otherwise, raters had the same roles | | | | |

| aParent-teacher agreement | | | | | | bSpearman correlation coefficients | | | | | | cIntraclass correlation coefficients | | | | |  #### Test-Retest Reliability Several studies that examined test-retest reliability are summarized in Table 3. Median reliability ranged from the mid-0.60s to highs in the 0.90s. In general, test-retest reliably was quite high, falling within ranges characterized by Cicchetti and Sparrow (1981) as good to excellent.

### Clinical Uses As noted, the ABC was developed as an outcome measure for pharmacological trials in people with developmental disabilities, and it has been used heavily for this purpose (see Annotated Bibliography, Aman 2015). However, use of the scale is not confined to research. The ABC can be used, in combination with other data-based approaches, to monitor the effects of routine clinical care in people with intellectual disabil-ities and/or ASD.

Its early use was primarily among individuals with intellectual disabilities alone, but in recent years it has been used a great deal to assess treat-ment outcomes in individuals with ASD. This is supported by the available data; one large study (n ¼ 1,893) produced very strong evidence for the factor validity of the ABC when used in children and adolescents with ASD. However, it is worth

all cases of CHARGE syndrome are due to muta- tions in CHD7, indicating that mutations in other genes can result in a similar clinical presentation. Moreover, as with other rare genetic syndromes associated with an increased risk of autism, stud- ies of the genetic etiology of CHARGE syndrome may provide insight into the genetics of autism.  ### Charter School  #### Definition In the United States and other countries, a charter school is a publicly funded but privately run school. These schools

and other countries, a charter school is a publicly funded but privately run school. These schools differ from traditional pub- lic schools because their existence is contingent upon meeting certain outcomes. When granted a charter, the school sets certain student achieve- ment goals that must be met at the time of charter renewal. The charters are renewed every 3–5 years, depending on the district or state. School leaders at charters have increased autonomy to meet these goals. When the number

or state. School leaders at charters have increased autonomy to meet these goals. When the number of applicants for a charter school exceeds available seats, stu- dents are admitted based on a lottery.  Charter schools can be primary or secondary schools. They do not charge admission and typi- cally are exempt from some requirements of pub- lic (state-run) schools. Students in these schools do participate in state-mandated testing. An increasing number of such schools serve children with

do participate in state-mandated testing. An increasing number of such schools serve children with special needs including autism.  ### CHD8  #### Synonyms AUTS18, Duplin, HELSNF1  #### Structure Chromodomain-helicase-DNA-binding protein 8 (CHD8) encodes an ATP-dependent DNA helicase located on chromosome 14q11.2 in humans. Two human isoforms of CHD8 are pro- duced by alternative splicing, with the canonical sequence spanning 2581 amino acids and 39 exons. CHD8, originally termed Duplin upon

the canonical sequence spanning 2581 amino acids and 39 exons. CHD8, originally termed Duplin upon its initial discovery, (Sakamoto et al. 2000) is a member of the chromodomain-helicase-DNA- binding protein family. The CHD family is char- acterized by the SNF-2-like ATPase and two chromodomains (chromatin organization modi- fier) (Marfella and Imbalzano 2007). Within this protein family, nine genes are organized into three subfamilies according to the presence or absence of specific functional

are organized into three subfamilies according to the presence or absence of specific functional domains. CHD8 bears most functional and structural similarity to CHD7 and CHD9, all of which exhibit a DNA-binding domain as well as a BRK domain located at the C-terminus. Conservation of CHD8 is evident across a diverse array of species including chim- panzees, rhesus monkeys, dogs, cows, mice, rats, zebrafish, and frogs, though 140 organisms have genes orthologous to the human CHD8 gene.  ####

zebrafish, and frogs, though 140 organisms have genes orthologous to the human CHD8 gene.  #### Function Through its many interactions, CHD8 has been shown to serve as a global regulator of chromatin architecture and gene expression. The discovery of CHD8, initially described as an axis duplica- tion inhibitor, was made through the observation of its novel interaction with the canonical Wnt/β-catenin pathway (Sakamoto et al. 2000). This pathway, which is implicated in embryonic development and

pathway (Sakamoto et al. 2000). This pathway, which is implicated in embryonic development and cellular proliferation among other biological processes, is negatively regulated by CHD8 through its binding β-catenin.  Yet the implications for CHD8 in early embryogenesis extend as well to its binding inter- action with tumor suppressor protein and tran- scription factor p53, where CHD8 is believed to recruit histone H1, an essential component in chromatin packing and structural integrity, in order

recruit histone H1, an essential component in chromatin packing and structural integrity, in order to stave off p53 transactivation activity and ultimately apoptosis (Nishiyama et al. 2009). The hypotheses as to exactly how CHD8 regulates transcription extend to evidence of its interaction with CTCF, an insulator binding protein that blocks the interaction between promoters and enhancers. In the absence of sufficient CHD8, effects on CpG methylation and histone acetyla- tion were observed around

of sufficient CHD8, effects on CpG methylation and histone acetyla- tion were observed around CTCF-binding sites, possibly interfering with proper insulation activ- ity, chromatin structure and integrity, as well as gene regulation and epigenetic control (Ishihara et al. 2006).  Indeed, the functional diversity of CHD8 has been shown through alternate proposals that CHD8 may modulate transcription via histone H3 lysine 4 (H3K4me3) modification (Yuan et al. 2007; Rodriguez-Paredes et al. 2009;

via histone H3 lysine 4 (H3K4me3) modification (Yuan et al. 2007; Rodriguez-Paredes et al. 2009; Sugathan et al. 2014; Cotney et al. 2015), associ- ations with RNA polymerase II (Rodriguez- Paredes et al. 2009), or remodeling general chro- matin architecture by other means.  #### Path of Physiology CHD8 is among a small list of genes attributed the highest confidence for its documented contribu- tion to autism spectrum disorder (ASD) risk. This level of confidence in its candidacy as an ASD risk

to autism spectrum disorder (ASD) risk. This level of confidence in its candidacy as an ASD risk gene is derived from the evidence of 26 de novo mutations or disruptions in the gene, identi- fied through both targeted re-sequencing and whole exome sequencing, among individuals diagnosed with ASD, (Bernier et al. 2014; De Rubeis et al. 2014; Iossifov et al. 2012; McCarthy et al. 2014; O’Roak et al. 2012a, b, 2014; Talkowski et al. 2012) making CHD8 one of the most mutated genes in simplex ASD

al. 2012a, b, 2014; Talkowski et al. 2012) making CHD8 one of the most mutated genes in simplex ASD (Barnard et al. 2015).  Among these mutations are a number of mis- sense variants, many of them predicted in silico to be damaging to protein function, and several implicit loss-of-function (LoF) or likely gene- disrupting (LGD) mutations that result in a pre- mature truncation of the gene, shift in the protein reading frame, or canonical splice site variant. Recorded disruptions of the gene also

the protein reading frame, or canonical splice site variant. Recorded disruptions of the gene also include chromosomal abnormalities such as the 14q11.1 breakpoint of a de novo balanced translocation of 3q25.31 and 14q11.1 [46 XX, t(3;14) (q25.31; q11.2)dn] (Talkowski et al. 2012).  These genetic aberrations in CHD8 further seem to exhibit some specificity at the phenotypic level, even among individuals diagnosed with ASD. Identifying genetic specificity within ASD may ultimately accelerate the

diagnosed with ASD. Identifying genetic specificity within ASD may ultimately accelerate the search for biologi- cally based diagnostic tools and individualized treatment regimens for patients who exhibit syn- dromic subtypes of ASD. Individuals with CHD8 mutations exhibit significantly larger head cir- cumferences, known as macrocephaly (O’Roak et al. 2012a, b; Talkowski et al. 2012; Bernier et al. 2014), gastrointestinal problems (Bernier et al. 2014), and often similarly dysmorphic facial

al. 2014), gastrointestinal problems (Bernier et al. 2014), and often similarly dysmorphic facial features (Bernier et al. 2014; Talkowski et al. 2012). Indeed, one hypothesis has suggested that the observation of macrocephaly in patients with CHD8 mutations may stem from the absence of necessary binding interactions of CHD8 with transcription factors that control cell cycle regula- tion (Subtil-Rodriguez et al. 2014) or from inter- ference in proper cell cycle progression due to insufficient

et al. 2014) or from inter- ference in proper cell cycle progression due to insufficient Chd8 protein levels (Rodriguez- Paredes et al. 2009). This support for a distinct CHD8 subtype of ASD that arises from disrup- tions in cellular proliferation and early develop- mental pathways has been recapitulated among animal models using both mice and zebrafish (Nishiyama et al. 2009; Sakamoto et al. 2000; Bernier et al. 2014).  Several studies have recently sought to explore the impact of heterozygous

Bernier et al. 2014).  Several studies have recently sought to explore the impact of heterozygous LoF mutations in CHD8 by investigating the downstream effects of CHD8 knockdown (Sugathan et al. 2014; Cotney et al. 2015; Wilkinson et al. 2015). While the exact mechanisms remain unclear, these studies have replicated the finding that both direct and indirect targets of CHD8 are strongly enriched for genes already known to be associated with ASD risk. Through binding inter- actions and indirect

for genes already known to be associated with ASD risk. Through binding inter- actions and indirect downregulation, CHD8 has been found to play a role in critical brain-based and neuronal development pathways that control synapse formation, neuron differentiation, and axon guidance as well as chromatin modification and transcriptional regulation.  In summary, evidence from the extensive study of CHD8 since its discovery in 2000 suggests that CHD8 may play a critical role in highly conserved

of CHD8 since its discovery in 2000 suggests that CHD8 may play a critical role in highly conserved evolutionary pathways. Given the evidence, it has been proposed that CHD8 likely serves as a mas- ter regulator for gene transcription and expression and that the gene sets regulated by CHD8 may in turn tightly control the proper development of the human brain and neuronal development during a key prenatal window (Bernier et al. 2014). Muta- tions that drastically alter the levels of CHD8 protein

window (Bernier et al. 2014). Muta- tions that drastically alter the levels of CHD8 protein likely disrupt these pathways and ulti- mately give rise to increased ASD risk.  ### Checklist for Autism in Toddlers (CHAT)  #### Abbreviations | Abbreviation | Full Name | |---|---| | CHAT | Checklist for autism in toddlers | | PDD-NOS | Pervasive developmental disorder-not otherwise specified | | ASD | Autism spectrum disorder | | PPV | Positive predictive value |  #### Description The CHecklist for

Autism spectrum disorder | | PPV | Positive predictive value |  #### Description The CHecklist for Autism in Toddlers (CHAT; Baron-Cohen et al. 1992, 1996) is a screening tool designed to capture early signs of autism in 18-month-olds by inquiring about milestones related to early social and communicative devel- opment. The CHAT consists of nine parent report items and five child observation items completed by the child’s general physician or health visitor. The parent questions (part A) assess

completed by the child’s general physician or health visitor. The parent questions (part A) assess abnormal behaviors commonly associated with autism spec- trum disorders (i.e., reduced social interest, social play, pretend play, protodeclarative pointing, and joint attention), as well as developmental behav- iors that are more likely to be intact in children with autism (i.e., rough and tumble play, motor development, protoimperative pointing, and func- tional play). The second set of

tumble play, motor development, protoimperative pointing, and func- tional play). The second set of questions (part B) was created to supplement the parent’s report of the child’s behavior. A trained professional administers five items measuring pretend play, protodeclarative pointing (both initiating and responding to another person’s point), eye con- tact, and functional play. All questions are in a yes/no format and administration time is approx- imately 15 min.  A high-risk score is obtained

a yes/no format and administration time is approx- imately 15 min.  A high-risk score is obtained if a child fails all five items addressing protodeclarative pointing, pretend play, and gaze monitoring across parent report and clinician observation. A medium-risk score results from failing both items on pro- todeclarative pointing. All other children are con- sidered to be at low risk for autism. Additionally, a two-stage screening method is recommended in which a child screens positive on the

Additionally, a two-stage screening method is recommended in which a child screens positive on the original CHAT administration, as well as upon re-administration 1 month later in attempts to reduce the likelihood of false positive cases (Baron-Cohen et al. 2000).  #### Historical Background The CHAT was developed in Great Britain by Baron-Cohen and colleagues as a way for primary care physicians or home visitor nurses to screen for autism in young children. It was the first screening tool to

or home visitor nurses to screen for autism in young children. It was the first screening tool to identify autism risk in 18-month-olds. The pilot version of the question- naire included several parent report items for each of 10 areas of development. In efforts towards quicker administration, items in the imitation domain were dropped, as these behaviors were determined to not be reliably present among most 18-month-olds (more than 20% did not), resulting in the current nine areas of

present among most 18-month-olds (more than 20% did not), resulting in the current nine areas of development. Subsequently, only the most frequently passed question for each domain was kept and the rest of the questions were dropped, resulting in the current version of one question for each of the nine areas.  In their initial study, Baron-Cohen et al. (1992) screened 50 randomly selected toddlers from a pediatric setting (low-risk) and 41 high-risk tod- dlers (younger siblings of children with

from a pediatric setting (low-risk) and 41 high-risk tod- dlers (younger siblings of children with autism). More than 80% of the randomly selected low-risk toddlers passed all items on the CHAT. Among the high-risk group, four toddlers failed at least two of five target ASD items and later had a diagnosis of ASD at follow-up. This first study, although a small sample, suggested its utility as an ASD screening instrument within a population that had been identified as being at-risk.  In a

as an ASD screening instrument within a population that had been identified as being at-risk.  In a subsequent validation study screening 16,000 children using the CHAT, Baron-Cohen et al. (1996) identified three critical content areas for identifying autism, which include pretend play (parent-report and observation), eye gaze (observation), and pointing (parent-report and observation), totaling five critical items. Twelve of the 16,000 children among the general popula- tion were identified as

five critical items. Twelve of the 16,000 children among the general popula- tion were identified as at-risk for autism; risk status was based on a two-stage screening approach in which the high-risk score cutoff of failing all five critical items was met both at the original administration of the CHAT as well as at retest approximately 1 month later. The two- stage method was adopted to help reduce false positive cases. Ten of these children received a diagnosis of autism and two had other

reduce false positive cases. Ten of these children received a diagnosis of autism and two had other develop- mental delays, suggesting that the measure had adequate utility for use in the general population.  Follow-up diagnostic evaluations at 3½ years of age indicated stability of diagnosis. In a follow-up study of the 16,000 children at age 7 years, the effectiveness of one-stage screening was com- pared to two-stage screening (Baird et al. 2000); see section “Psychometric Data.” In an

was com- pared to two-stage screening (Baird et al. 2000); see section “Psychometric Data.” In an article summarizing published research on the CHAT, Baron-Cohen et al. (2000) recommended using two-stage screening so as to ensure that failing items on the first CHAT are significant develop- mental concerns rather than situational concerns on the day of administration (i.e., having a “bad day”) or milder developmental delays.  Several different scoring systems and versions have been developed

or milder developmental delays.  Several different scoring systems and versions have been developed since the original CHAT. Scambler et al. (2001) published data on a modi- fied scoring system for the CHAT, called the Den- ver criteria. The Denver scoring criteria differed in that they included failing a parent-report item of pretend play or pointing to show an object, as well as clinical observation of pointing impairment.  Additionally, the Modified Checklist for Autism in Toddlers (M-CHAT;

of pointing impairment.  Additionally, the Modified Checklist for Autism in Toddlers (M-CHAT; Robins et al. 1999) is a parent-report screening measure that was adapted from the original CHAT in order to capture the whole spectrum of disorders, rather than just Autistic Disorder. It consists of 23-item “yes or no” questions. Preliminary results in a mixed low- and high-risk sample indicated prom- ising psychometric properties (Robins et al. 2001).  The latest revision is known as the Modified

ising psychometric properties (Robins et al. 2001).  The latest revision is known as the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F; Robins et al. 2009, 2014). This version formalized the two- step screening approach, using the structured Follow-Up questions for children who score at risk. The parent questionnaire is slightly shorter than the M-CHAT, consisting of 20 items. Addi- tional changes include removing three items that exhibited poor discriminant

of 20 items. Addi- tional changes include removing three items that exhibited poor discriminant validity, re-ordering items to reduce affirmative response bias, adding examples describing target behaviors, and sim- plifying wording. Children who screen positive (total score ≥ 3) complete the Follow-Up; at-risk score at Follow-Up is ≥ 2. The M-CHAT-R/F has been adapted for electronic administration (Campbell et al. 2017; Sturner et al. 2016) and use of drawings to illustrate items; see www.

(Campbell et al. 2017; Sturner et al. 2016) and use of drawings to illustrate items; see www. mchatscreen.com for translations including illustrations.  Data on the CHAT-23, a version of the CHAT applicable for Chinese children, was published by Wong et al. (2004). This version is a combina- tion of both the M-CHAT and CHAT in that it consists of a Chinese translation of the 23-item M-CHAT (part A) plus the five clinical observa- tion items from the CHAT (part B). Initial data on 18- and

(part A) plus the five clinical observa- tion items from the CHAT (part B). Initial data on 18- and 24-month-olds identified seven critical items from part A, and four key items in part B. The fifth item in part B assessed general devel- opmental ability (i.e., functional play), which is thought to develop normally in autism and was not included in the statistical analysis. Screen positives on part A include failing two of seven items determined to be critical in this translation or any six of the

include failing two of seven items determined to be critical in this translation or any six of the 23 items overall; screen positives on part B include failing at least two of the four key items. Based on their results, the authors suggest a two-stage algorithm for screening. This includes universal screening using part A, followed by part B screening only for those chil- dren who screen positive on part A.  Another version is the Quantitative Checklist for Autism in Toddlers (Q-CHAT; Allison

on part A.  Another version is the Quantitative Checklist for Autism in Toddlers (Q-CHAT; Allison et al. 2008), which took the form of a 25-item parent- report scale in which responders quantify behav- iors based on a 5-point Likert rating scale. Likert scale response items vary depending on the ques- tion and range from, for example, “always” to “never,” “many times a day” to “never,” “very easy” to “impossible,” etc. This allows for dem- onstration of reduced frequency of particular behaviors

to “impossible,” etc. This allows for dem- onstration of reduced frequency of particular behaviors that children with an ASD might exhibit, rather than requiring parents to judge absolute absence of these behaviors. In addition to the three key items identified by Baron-Cohen et al. (1996), which are pretend play, eye gaze, and protodeclarative pointing, the Q-CHAT includes other domains, such as language development and repetitive behaviors. The Q-CHAT has been used to measure clinical

such as language development and repetitive behaviors. The Q-CHAT has been used to measure clinical comparisons, not just for early ASD detection. For example, in a sample of chil- dren born premature, the Q-CHAT was used to assess social-communication outcomes in con- junction with measures of sociodemographic fac- tors and cognitive functioning (Wong et al. 2014). Results indicated higher Q-CHAT scores (i.e., greater social-communication difficulties) relative to norms; lower cognitive

Q-CHAT scores (i.e., greater social-communication difficulties) relative to norms; lower cognitive functioning and ethnic minority status was associated with higher Q-CHAT scores. Additionally, the Q-CHAT has been used to measure ASD traits and sex differ- ences at age 18–24 months and compare to testos- terone levels; results have shown prenatal testosterone levels but not postnatal testosterone levels, to be related to later ASD traits and sex differences (Auyeung et al. 2012). This measure

levels, to be related to later ASD traits and sex differences (Auyeung et al. 2012). This measure has been translated into several languages, and cross-cultural validation studies have been conducted in clinical and unselected samples in Singapore (Magiati et al. 2015), Colombia (Gutiérrez-Ruiz et al. 2019), and Italy (Ruta et al. 2019a, b).  #### Psychometric Data The entire screening sample for the initial low-risk CHAT validation included 16,000 children screened at age 18 months

sample for the initial low-risk CHAT validation included 16,000 children screened at age 18 months (Baron-Cohen et al. 1996), who were later followed up when the children turned 7 years old (Baird et al. 2000) in order to calculate complete psychometric data, which requires ascertainment of missed cases or false negatives. Based on their results, there were 50 cases of autism and 44 cases of PDD-NOS in the sample. The authors compared psychometric data of the CHAT when using one-stage screening

in the sample. The authors compared psychometric data of the CHAT when using one-stage screening versus two-stage screening (two administrations 1 month apart). Based on one-stage screening, 10 of the 50 autism cases were identified by the high-risk score, and an additional 9 cases were identified using the medium-risk score. This yielded a sensitivity of 0.20, specificity of 0.998, and positive predictive value (PPV) of 0.26 using the high-risk score, and sensitivity of 0.38, spec- ificity of

predictive value (PPV) of 0.26 using the high-risk score, and sensitivity of 0.38, spec- ificity of 0.98, and PPV of 0.05 for the medium- risk score. Of all 94 ASD cases, medium-risk scoring criteria identified 33 cases whereas high- risk cutoff scores captured 11 cases. The high-risk cutoffs demonstrated a sensitivity of 0.12, specificity of 0.998, and PPV of 0.29; medium- risk scores yielded a sensitivity of 0.35, specificity of 0.98, and PPV of 0.08. When using the two- stage screening in

a sensitivity of 0.35, specificity of 0.98, and PPV of 0.08. When using the two- stage screening in identifying cases of autistic disorder, PPV increased to 0.75 and 0.29 for the high-risk and medium-risk cutoffs, respectively. Specificity remained high, whereas sensitivity somewhat dropped to 0.18 and 0.20 for the high- risk and medium-risk cutoffs, respectively. For all ASD cases, there was a similar pattern with PPV again increasing to 0.83 and 0.59 based on the high-risk and medium-risk

a similar pattern with PPV again increasing to 0.83 and 0.59 based on the high-risk and medium-risk scores, respectively, specificity remaining high, and sensitivity some- what decreasing to 0.11 and 0.21 for high-risk and medium-risk cutoffs, respectively. Overall, two- stage screening increases the CHAT’s PPV, which increases the likelihood that a screen positive case will receive an ASD diagnosis; however, the false positive rate is greater in the two-stage approach compared to screening at a

however, the false positive rate is greater in the two-stage approach compared to screening at a single time point, thus reducing the measure’s sensitivity (Baird et al. 2000; Baron-Cohen et al. 2000).  The Denver criteria (Scambler et al. 2001) were based on post hoc analysis as part of their study on the CHAT as a Level 2 screener. These scoring criteria were compared to original scoring criteria on a sample of two- to three-year-old children with ASD (n = 26) and other develop- mental

criteria on a sample of two- to three-year-old children with ASD (n = 26) and other develop- mental disorders (DD; n = 18) to determine how well the CHAT distinguishes between the two groups. The Denver scoring criteria yielded 0.85 sensitivity and 1.00 specificity, whereas the sen- sitivity dropped to 0.65 when using the original CHAT scoring criteria, with specificity remaining at 1.00. A subset of these children (ASD n = 19; DD n = 11) participated in a follow up study two years later to

of these children (ASD n = 19; DD n = 11) participated in a follow up study two years later to assess stability of diagnosis (Scambler et al. 2006). Original CHAT scoring at Time 1 correctly classified 83% of the sample at Time 2 (five missed cases of ASD); 93% of the sample was correctly identified at Time 2 based on the Denver scoring criteria of the CHAT at Time 1 (two missed cases of ASD). The CHAT’s orig- inal scoring and Denver scoring have been assessed for utility in detecting autism in

CHAT’s orig- inal scoring and Denver scoring have been assessed for utility in detecting autism in Fragile X syndrome cases (Scambler et al. 2007). On a sample of 17 children (mean age = 34 months), results yielded sensitivity of 0.50 and specificity of 1.00 using CHAT scoring criteria and sensitiv- ity of 0.75 and specificity of 0.92 using the Denver scoring criteria.  Two-stage screening with the CHAT was eval- uated in a population-based cross-sectional study in Ireland (VanDenHeuvel et al.

CHAT was eval- uated in a population-based cross-sectional study in Ireland (VanDenHeuvel et al. 2006). At the initial screen, 29 of 2117 toddlers demonstrated medium or high risk at 18-month developmental checkup, of which at secondary screening 7 con- tinued to screen positive, 12 exhibited low risk, and 10 did not participate. The seven children who screened positive and five of the children who declined secondary screening completed a clinical assessment (n = 12), and seven children were

who declined secondary screening completed a clinical assessment (n = 12), and seven children were diagnosed with ASD, yielding a prevalence of 33.1 per 10,000, 95% CI [12.3, 68.0]. Based on methodological issues, additional psychometric data could not be assessed and is not included in Table 1.  The utility of the CHAT as a tool to detect autism in children younger than 3 years was also investigated in a Swedish population (Höglund- Carlsson et al. 2010). Nurses were instructed to administer

in a Swedish population (Höglund- Carlsson et al. 2010). Nurses were instructed to administer the CHAT if the child was identified to be at-risk based on developmental surveillance; those who screened positive on the CHAT were administered a subsequent CHAT. In a population of 35,990 18-month-olds, 6822 screened positive on developmental surveillance; however, only 18% of these cases were administered a CHAT (n = 1230), which was primarily a decision made by the nurses who reported that most

a CHAT (n = 1230), which was primarily a decision made by the nurses who reported that most often the children in those cases seemed to be non-autistic. Compared to a control study area in which developmental surveillance as usual was being conducted, an equal number of children were referred for an ASD evaluation. The authors con- cluded that the use of the CHAT did not help increase the number of children who received an ASD diagnosis before age three. However, the procedures used in the

of children who received an ASD diagnosis before age three. However, the procedures used in the study differed from those used in previous studies. Specifically, the CHAT  | Study | Sample | Sensitivity | Specificity | PPV | |:---|:---|:---|:---|:---| | Baird et al. 2000 | n = 16,000, level 1 Mean age = 18.7 mo. | | | | | One-stage screening: | | | | | | Autistic disorder | | | | | | High-risk score | 0.20 | 0.998 | 0.26 | | | Medium-risk score | 0.38 | 0.98 | 0.05 | | | ASD | | | | | | High-risk

| 0.20 | 0.998 | 0.26 | | | Medium-risk score | 0.38 | 0.98 | 0.05 | | | ASD | | | | | | High-risk score | 0.12 | 0.998 | 0.29 | | | Medium-risk score | 0.35 | 0.98 | 0.08 | | | Two-stage screening: | | | | | | Autistic disorder | | | | | | High-risk score | 0.18 | 0.999 | 0.75 | | | Medium-risk score | 0.20 | 0.999 | 0.29 | | | ASD | | | | | | High-risk score | 0.11 | 0.999 | 0.83 | | | Medium-risk score | 0.21 | 0.999 | 0.59 | | | Scambler et al. 2001 | Autism n = 26; mean age = 33 mo., level

score | 0.21 | 0.999 | 0.59 | | | Scambler et al. 2001 | Autism n = 26; mean age = 33 mo., level 2 DD n = 18; mean age = 34 mo. | | | |

| Denver scoring criteria | 0.85 | 1.00 | | | | CHAT scoring criteria | 0.65 | 1.00 | | | | Scambler et al. 2006 | Fragile X n = 17, level 2 Mean age = 34 mo. | | | | | Denver scoring criteria | 0.75 | 0.92 | | | | CHAT scoring criteria | 0.50 | 1.00 | | | | Wong et al. 2004 (CHAT-23) | ASD n = 87; mean age = 51 mo., level 2 DD n = 125; mean age = 29 mo. | | | |

| Part A: Fail 2/7 key items | 0.93 | 0.77 | 0.74 | | | Part A: Fail 6/23 total items | 0.84 | 0.85 | 0.79 | | | Part B: Fail 2/4 key items | 0.74 | 0.91 | 0.85 | | | Allison et al. 2012 (Q-CHAT-10) | ASD n = 126; mean age = 36 mo. Control n = 754; mean age = 21 mo. | | | |
| Q-CHAT 10-item version | 0.91 | 0.89 | 0.58 | | | Raza et al. 2019 (Q-CHAT-10) | High-risk sibling n = 116 (with ASD n = 25) Low-risk control n = 56 (with ASD n = 0) | | | |

| 18-month screening | 0.75 | 0.63 | 0.36 | | | 24-month screening | 0.71 | 0.65 | 0.34 | |  was not uniformly administered to the entire sam- ple; in addition, 63% of the nurses reported having deviated from the study protocol. Therefore, one might interpret these results to indicate that when providers select a subset of cases for screening, the use of standardized screening tools may not improve detection of autism.  The psychometric properties of the CHAT-23 (Wong et al. 2004) in a sample

detection of autism.  The psychometric properties of the CHAT-23 (Wong et al. 2004) in a sample of 212 toddlers ages 13 to 86 months yielded a sensitivity of 0.93, specificity of 0.77, and positive predictive value of 0.74 when failing two of the seven key items in part A. Failing any six from the 23 parent items resulted in a sensitivity of 0.84, specificity of 0.85, and positive predictive value of 0.79. Failing two of four key items in part B produced a sensitivity of 0.74, specificity of 0.91,

0.79. Failing two of four key items in part B produced a sensitivity of 0.74, specificity of 0.91, and positive predictive value of 0.85. Given the sensitivity-specificity tradeoff between using the key items for screening in part A compared to part B, the authors proposed two-level screening approach in which part B is only administered to those who initially screen positive on part A. Limitations of the study included the small sample size, and that screening was administered after children had

of the study included the small sample size, and that screening was administered after children had already been evaluated and diagnosed.  Initial publication of Q-CHAT (Allison et al. 2008) data compared total scores within an unse- lected sample (n = 779; mean age = 21 months) to total scores among an ASD sample (n = 160; mean age = 45 months). Results demonstrated a significantly higher mean score for the ASD group relative to the control group, whose range of scores approximated a normal

score for the ASD group relative to the control group, whose range of scores approximated a normal distribution. Also, the Q-CHAT demonstrated good test-retest reli- ability of 0.82 and discrimination between ASD and control groups. However, similar to the CHAT-23, interpretation of findings is prelimi- nary, given the small sample size and because screening was completed after children were already evaluated and diagnosed, which may impact how parents report about their child’s behavior. The

evaluated and diagnosed, which may impact how parents report about their child’s behavior. The Q-CHAT has been evaluated across several ethnic groups, including in Singapore (Magiati et al. 2015), Colombia (Gutiérrez-Ruiz et al. 2019), and Italy (Ruta et al. 2019a, b). Some of these studies have compared Q-CHAT results from parents of children already diagnosed with ASD to a sample of typical children, but such use of preselected samples has limited utility in eval- uating screening tools, as

but such use of preselected samples has limited utility in eval- uating screening tools, as this method is not con- sistent with how the tool was designed to be used. Additionally, parents of children with ASD may have varying degrees of ASD knowledge com- pared to the general population, which can affect responses.  Allison et al. (2012) sought to develop a 10-item version of the Q-CHAT on a sample of 126 preschool children with an autism spectrum diagnosis and 754 typically developing

a sample of 126 preschool children with an autism spectrum diagnosis and 754 typically developing toddlers. They identified the 10 most discriminating items with a cutoff score of 3, yielding the following psychometric properties: sensitivity = 0.91, spec- ificity = 0.89, PPV = 0.58, and internal consis- tency >0.85; however, these psychometrics should be considered preliminary until a large validation study is conducted. Raza et al. (2019) demonstrated that screening with Q-CHAT-10 distinguished

study is conducted. Raza et al. (2019) demonstrated that screening with Q-CHAT-10 distinguished high-risk siblings who were ulti- mately diagnosed with ASD from other high-risk and low-risk toddlers. However, specificity and PPV were below 70%, and its use as a stand- alone measure for high-risk infants was not recommended.  #### Clinical Uses The CHAT is designed for use at 18-month checkups in the pediatric setting to identify chil- dren at risk for an autism spectrum disorder.  ### Chelation

pediatric setting to identify chil- dren at risk for an autism spectrum disorder.  ### Chelation  #### Definition Chelation involves the use of various agents to remove heavy metals from the body – typically lead – but sometimes arsenic, mercury, or other metals are the targets. Various agents can be used for this process. These agents were first developed in the treatment of poison gas inhalation during World War I and have been substantially modified and refined over the years to increase

during World War I and have been substantially modified and refined over the years to increase efficiency while minimizing side effects. Various routes of administration are used for these chelating agents. There are occasional uses in treatment of other diseases, e.g., those that involve excess iron storage.  As an alternative treatment, many claims have been made, but not scientifically substantiated for a range of conditions ranging from atherosclerosis to autism. The use in autism rested, in

for a range of conditions ranging from atherosclerosis to autism. The use in autism rested, in part, on the unproven suggestion that high mercury levels were involved in the production of autism. There is no scientific justification for this process in autism.  There can be significant risks to chelation – including hypocalcemia, anemia, kidney prob- lems, and cardiac difficulties. There are reports of deaths including one child with autism. Deaths may relate to hypocalcemia. As with all non-

of deaths including one child with autism. Deaths may relate to hypocalcemia. As with all non- proven treatments, particularly when some sub- stantial risk is concerned, parents should be careful to make informed treatment choices.  ### Chess, Stella  #### Name and Degrees *   B.A., 1935, Smith College, Northampton, MA *   M.D., 1939, New York University College of Medicine, New York, NY  #### Major Appointments (Institution, Location, Dates) *   Psychiatry Residency, Grasslands Hospital in

Major Appointments (Institution, Location, Dates) *   Psychiatry Residency, Grasslands Hospital in Eastview, NY *   1954–1966 Assistant Professor, New York Medical College *   1966–2007 Associate and Full Professor, New York University School of Medicine  #### Major Honors and Awards *   Smith College Medal, 1999  #### Landmark Clinical, Scientific, and Professional Contributions Stella Chess made many important scientific con- tributions. She began her New York Longitudinal Study in 1956. This

many important scientific con- tributions. She began her New York Longitudinal Study in 1956. This body of work, focused on careful observation of styles of behavior and personality, led to the development of Chess’s concept of varying temperament. Her work helped shift the field from a sole reliance on intrapsychic conflict and anxiety (as exemplified in then pop- ular psychoanalytic work) but instead suggested the importance of understanding individual differ- ences. Chess also elaborated the

suggested the importance of understanding individual differ- ences. Chess also elaborated the notion of “good- ness of fit,” e.g., relative to potential matches and mismatches in parental style and child tempera- ment. This work led to a growing body of work on the basis of individual differences, their stability, and relationship to childhood problems. In 1971, she reported on a possible observation of an asso- ciation between congenital rubella. In retrospect, the developmental course of many

of an asso- ciation between congenital rubella. In retrospect, the developmental course of many of the patients she first reported seemed less typical of autism, but her work focused attention on a possible bio- logical mechanism in the condition. Chess also was noted for her pioneering work in psychiatric- pediatric liaison work and also edited an influen- tial book series, Annual Progress in Child Psychi- atry and Child Development, that continues to be published. She founded the first pediatric

Psychi- atry and Child Development, that continues to be published. She founded the first pediatric psychi- atry unit at Bellevue Hospital and was a professor at NYU.  #### Short Biography Born in New York to immigrant parents from Russia, Chess studied at the Ethical Culture School and then Smith College before entering NYU Medical School in 1935. She met her hus- band, and research collaborator, Alexander Thomas while they both were in medical school. They married in 1938. While in medical

Alexander Thomas while they both were in medical school. They married in 1938. While in medical school, she worked with Lauretta Bender. Chess began, in collaboration with her husband, the New York Longitudinal Study of Child Development that followed several hundred youth. During the course of their work, they identified a series of basic temperaments and parenting styles and also began to emphasize the importance of “goodness of fit” with parents. Many trainees worked with her. She continued to

the importance of “goodness of fit” with parents. Many trainees worked with her. She continued to teach at NYU into her 90s. She was involved in training many of the leaders in the field and collaborated with Michael Rutter among others.  ### Child Abuse in Autism  #### Definition Children with autism spectrum disorders are sig- nificantly more likely than typically developing children to be the victims of abuse, which encom- passes emotional abuse, physical abuse, sexual abuse, and neglect.  ####

of abuse, which encom- passes emotional abuse, physical abuse, sexual abuse, and neglect.  #### Historical Background Child abuse, which includes physical abuse, emo- tional abuse, sexual abuse, and neglect, is less studied among children with autism spectrum dis- orders (ASD) than it is among typically develop- ing children, despite their elevated risk for exposure. However, abuse among ASD and intel- lectual disability (ID) populations is a growing area of research and awareness, and a

and intel- lectual disability (ID) populations is a growing area of research and awareness, and a specific focus on sexual abuse has emerged. While previ- ous attitudes held that individuals with disabilities were asexual and could not be negatively impacted by others’ sexual behaviors, current research is more respectful of the humanity and sexuality of individuals with disabilities, includ- ing ASD. Individuals with ASD who have extremely limited or impaired functional communication skills may

Individuals with ASD who have extremely limited or impaired functional communication skills may be particularly at risk, as perpetrators may believe that the individual with ASD will not be able to disclose their role in the abusive incidents to family members or authorities.  #### Current Knowledge The Centers for Disease Control and Prevention (CDC) reported that in 2008, approximately 772,000 children in the USA were victims of maltreatment. Of these children, the majority (71%) experienced

children in the USA were victims of maltreatment. Of these children, the majority (71%) experienced maltreatment, 16% experi- enced physical abuse, 9% experienced sexual abuse, and 7% experienced emotional abuse. The rates of child sexual abuse are particularly high: recent studies by the CDC suggest that 16.67% of boys and 25% of girls in the general population experience some form of sexual abuse before the age of 18. It is likely that the actual rate of sexual abuse is even higher than

abuse before the age of 18. It is likely that the actual rate of sexual abuse is even higher than reported by the CDC, given the multiple reasons that victims might be reluctant to disclose or report abuse when it has happened. Also, it is important to keep in mind that the CDC reports statistics for the greater population, and does not compare rates of maltreatment based on children’s disability sta- tus. However, research has consistently suggested that children with ID are at greater risk

sta- tus. However, research has consistently suggested that children with ID are at greater risk than typ- ically developing children to be the victims of all forms of maltreatment (Sobsey 1994). Children with ID are also less likely than typically devel- oping children to report abuse when it has occurred. Reasons for more limited reporting include communication impairments, social knowledge deficits (e.g., not understanding that the interaction was inappropriate), and greater likelihood of

deficits (e.g., not understanding that the interaction was inappropriate), and greater likelihood of attributing blame for a negative interaction to oneself due to a history of difficult social interactions. The constellation of research documenting greater exposure coupled with reduced likelihood of reporting is very concerning and highlights the importance of protecting the safety and well-being of children with ASD, ID, and other disabilities.  A great deal of what is currently understood

of children with ASD, ID, and other disabilities.  A great deal of what is currently understood about abuse among children with ASD comes from a landmark study by Mandell et al. (2005). This study is unique in that it looks specifically at the experiences of children with ASD, instead of ID more broadly, and considers experiences of both sexual and physical abuse. Unlike previous studies, which drew heavily from institutionalized populations, Mandell et al. recruited participants who received

drew heavily from institutionalized populations, Mandell et al. recruited participants who received treatment in community settings, much like the majority of children diagnosed with ASD today. This was an important distinc- tion because children who live in hospital and institutional settings are at a greater risk for abuse, and it is problematic to generalize findings from this population to children who live at home with their families. The results of this study revealed high rates of abuse –

who live at home with their families. The results of this study revealed high rates of abuse – 18.5% of the 156 children in the sample were reported by their parents to have experienced physical abuse, and16.6% were reported to have experienced sex- ual abuse – among children with ASD. While these rates are lower than the ones put forth by the CDC of all children, it is important to consider that the average age of participants in this study was 11 years and the CDC reports their statistics

the average age of participants in this study was 11 years and the CDC reports their statistics through age 18. Mandell et al. found that children who had experienced physical abuse were more likely than non-abused children to act out sexu- ally, to engage in abusive behavior themselves, to attempt suicide, and to have conduct and/or aca- demic problems. Similarly, children who had experienced sexual abuse were more likely than non-abused children to act out sexually, to engage in abusive

sexual abuse were more likely than non-abused children to act out sexually, to engage in abusive behavior themselves, and to attempt suicide. Additionally, these children were also more likely to engage in self-injurious behavior in addition to suicidal behavior, to run away from home, and to have had a psychiatric hospitaliza- tion. Contrary to the previous belief that children with ASD were not susceptible to the effects of abuse, the findings of this study suggest quite the opposite.  In

not susceptible to the effects of abuse, the findings of this study suggest quite the opposite.  In considering recent research about child abuse and ASD, it is important to consider that the rate of abuse is likely even higher than reported since communication deficits associated with ASD may make it more challenging for victims to report abuse, and for these reports to be taken seriously, when it does occur. Some research has been conducted on victims’ reactions following sexual abuse, and

it does occur. Some research has been conducted on victims’ reactions following sexual abuse, and these findings sug- gest that children with ASD may respond differ- ently from typically developing children. For example, a child with ASD who has low language abilities may engage in self-injurious or self- stimulatory behavior to try to communicate or cope with the abuse that he or she experienced. Or, a child with ASD who demonstrates echolalia may recount what a perpetrator said during an

Or, a child with ASD who demonstrates echolalia may recount what a perpetrator said during an abusive episode. However, this may not be recog- nized for what it is by parents or caretakers, who could dismiss the behavior simply as non- functional communication or meaningless jargon. In the absence of recognizing that abuse has occurred and taking appropriate steps to inter- vene, the abuse could continue. Therefore, the current literature suggests that parents and care- takers of children with

continue. Therefore, the current literature suggests that parents and care- takers of children with ASD should take note of any changes in behavior (including an increase in intensity or frequency of an existing behavior, or the appearance of a new one), as it could indicate abuse. This is not to say that changes in behavior always signal that abuse has occurred – it is pru- dent, however, to consider the possibility that individuals with ASD may have been exposed to abuse.  The same language

the possibility that individuals with ASD may have been exposed to abuse.  The same language impairments that may pre- vent children with ASD from communicating that abuse has occurred may be part of the reason why they are victimized more often than typically developing children in the first place. Perpetrators may believe that children with ASD would be less likely to report the abuse to others and, in turn, the perpetrator would not be discovered. Also, the social deficits associated with ASD

and, in turn, the perpetrator would not be discovered. Also, the social deficits associated with ASD may also make children on the spectrum appealing to per- petrators. For example, the perpetrator may believe that a child with ASD can be manipulated more easily and be less likely to “fight back” against advances than a typically developing child.  Unfortunately, perpetrators may take advantage of children with social difficulties by presenting themselves as a “friend.” Also, chil- dren with ASD

children with social difficulties by presenting themselves as a “friend.” Also, chil- dren with ASD are encouraged to cooperate with teachers, clinicians, and other professionals from a very early age, and this learned compliance may lead them to follow and not to question the motives or advances of a perpetrator.  Both large-scale and small-scale studies have suggested that children with ASD are at a greater risk for abuse and maltreatment than typically developing children. There are multiple

at a greater risk for abuse and maltreatment than typically developing children. There are multiple possible explanations for this phenomenon, some of which are related to the nature of ASD symptoms. There is compelling evidence that parents raising chil- dren with ASD experience much higher levels of parenting stress and depression than parents rais- ing typically developing children or children with other intellectual and developmental disabilities. Parenting stress and depression have each

with other intellectual and developmental disabilities. Parenting stress and depression have each been linked as risk factors for abuse (Holden and Banez 1996; McPherson et al. 2009). Because of the unpredictability of behavior among children with ASD, parents and caregivers may at times become frustrated with their children’s ASD-associated traits and instead of coping with this frustration in constructive ways, they may direct it aggres- sively and abusively toward their child. The frus-

in constructive ways, they may direct it aggres- sively and abusively toward their child. The frus- trations that lead some parents to abuse their children with ASD may lead others to neglect them. Algood et al. (2011) examine systems- level factors to see which characteristics might contribute to the neglect of children with devel- opmental disabilities more broadly.  When examining the rates and types of mal- treatment among children with ASD, it is impor- tant to consider who the most common

types of mal- treatment among children with ASD, it is impor- tant to consider who the most common perpetrators are. Current research suggests that the most likely perpetrator differs depending on the type of abuse. In the general population, par- ents are the most common perpetrators of child neglect. However, when it comes to the other forms of child maltreatment, perpetrators fre- quently fall into one of these four categories: disability service providers, acquaintances and neighbors,

fall into one of these four categories: disability service providers, acquaintances and neighbors, family members, and peers with dis- abilities (Sobsey 1994). This information is help- ful to consider when assessing whether an individual with ASD has experienced abuse; it can also help in the development of preventative programs, which are discussed in the section below.  #### Future Directions Given what is known about the heightened risk of sexual abuse among children with ASD, it is

Given what is known about the heightened risk of sexual abuse among children with ASD, it is important to provide age- and developmentally appropriate sexuality training to all individuals, regardless of their disability status (Edelson 2010) and to ensure that parents understand the height- ened risk and have supportive resources and respite available. While sexuality education is associated with multiple positive outcomes, it serves a partic- ular function for individuals, such as children

multiple positive outcomes, it serves a partic- ular function for individuals, such as children with ASD, who are susceptible to abuse. Sexuality edu- cation can empower individuals so that they may be proactive and take steps to prevent being victimized (although it is important to note here that sexual abuse is never the fault of the victim). Sexuality education is also important because it can help individuals to recognize and report sexual abuse when it has occurred. Especially for children

help individuals to recognize and report sexual abuse when it has occurred. Especially for children with ASD, who may have difficulty navigating social situations and understanding the intentions of others, social skills training can serve a similarly valuable function in protecting against sexual or emotional abuse.  In light of the heightened rates of abuse among children with ASD and its associated detrimental outcomes, it is very important to have valid and reliable instruments that can

detrimental outcomes, it is very important to have valid and reliable instruments that can determine whether a child with ASD has experienced abuse. Edelson (2010) points out that some tools that are used with typically developing children, such as inter- views and anatomically detailed dolls, are inap- propriate for children with ASD. Children with ASD often prefer familiar routines, environments, and settings, and to be interviewed by a new clinician when abuse is suspected could be an

and settings, and to be interviewed by a new clinician when abuse is suspected could be an upsetting and off-putting experience. Also, some of the current tools for assessing abuse require a level of verbal expression that many children with ASD do not possess. Therefore, instruments for detecting abuse must be developed specifically for the needs and capabilities of children with ASD.  Overall, more research is needed to understand the rates and types of abuse experienced specifi- cally by

more research is needed to understand the rates and types of abuse experienced specifi- cally by children with ASD, and who is perpetrat- ing this abuse. Additionally, more research is needed on the short- and long-term effects of abuse on children with ASD. Taken together, this information could be useful in preventative, educational programs for both children with ASD and the adults in their lives. Also, this information could help in the interventions and treatments for children who have been

Also, this information could help in the interventions and treatments for children who have been victimized.  ### Child and Family Characteristics that Predict Clinic Appointment Attendance and Alignment with Providers

#### Definition Children with autism spectrum disorder (ASD) present with a wide range of complex needs related to their mental and physical health. To adequately address the various needs present in ASD, more families are being referred to ASD specialty clinics. Families who receive services at ASD specialty clinics often come for multiple visits with many interdisciplinary providers (e.g., physicians, psychologists, speech and language pathologists, etc.). For example, there is often an

physicians, psychologists, speech and language pathologists, etc.). For example, there is often an initial diagnostic appointment with a medical and/or psychological provider. After diagnosis, families are frequently referred for further com- prehensive assessments related to their cognitive (with neuropsychologists), language (with speech and language pathologists), and physical (with occupational and/or physical therapists) needs. The provision of specialty services is often from

occupational and/or physical therapists) needs. The provision of specialty services is often from interdisciplinary providers across multiple visits to the clinic, including an initial appoint- ment, the diagnostic evaluation, and follow-up care. Given that families of children with ASD are frequent consumers of specialty services, it is important to examine appointment attendance and alignment with providers about ASD diagnosis.  When children are not receiving intervention, families are less

providers about ASD diagnosis.  When children are not receiving intervention, families are less likely to keep their initial appoint- ment. It is possible that children who are not receiving intervention are presenting with mini- mal or inconsistent symptoms that could be tem- porarily extinguished. As a result, their parents may change their minds when it comes to keeping their initial appointment. These families may be reticent to follow through with their initial appointment seeking due to

These families may be reticent to follow through with their initial appointment seeking due to lack of familiarity with the diagnostic and treatment process. It is essential to spend more time scheduling and pro- viding these families with essential resources to make them more comfortable about seeking ser- vices.  More specifically, families may benefit from live conversations with a clinic triage spe- cialist. This specialist could inquire about the nature of their concern, and explain the

spe- cialist. This specialist could inquire about the nature of their concern, and explain the evaluation process, and, where appropriate, assist with the identification of local resources.  Families residing long distances and having older children are less likely to keep their initial and follow-up appointments. Families that live far distances have more difficulty accessing and uti- lizing specialty care services and, therefore, may rely more heavily on the school system for services. Older

care services and, therefore, may rely more heavily on the school system for services. Older children may be presenting with less severe symptoms. Therefore, these parents may not be scheduling their initial appointment because older and/or less symptomatic children are not experiencing clinically significant impair- ments that are interfering with daily life and others have tolerated their differences more easily. For these families, more refined communication is necessary to explain the

differences more easily. For these families, more refined communication is necessary to explain the importance of initial visits and follow-up care in order to support par- ents in service utilization. It is important that parents perceive keeping their appointment to have a high benefit to cost ratio.  African-American families are less likely to keep their initial appointment and express initial doubts with providers about the diagnosis. There- fore, there are barriers that are preventing

doubts with providers about the diagnosis. There- fore, there are barriers that are preventing African- American families from utilizing specialty care services despite them taking initiative. It is impor- tant for service provision systems to identify and address the barriers that African-American fami- lies may experience during the critical period from service initiation to utilization. African-American families’ pre-visit diagnostic beliefs are more likely to be misaligned with providers’

families’ pre-visit diagnostic beliefs are more likely to be misaligned with providers’ delivery of an ASD diagnosis. There is a stigma associated with being “labeled” with a mental health diagno- sis, and this is particularly true for ethnic and racial minority families. Lack of alignment may be one probable mechanism through which dis- parities arise (i.e., later diagnosis, more visits before diagnosis, and/or different diagnosis) between children who are African-American and other races

diagnosis, and/or different diagnosis) between children who are African-American and other races compared to White children. In order for families and providers to be aligned in their diagnostic beliefs, it is imperative that providers communicate in culturally competent ways about ASD symptomology, as well as early detection and intervention.  ### Child Behavior Checklist in Autism  #### Synonyms CBCL 1.5–5; CBCL 6–18; Child Behavior Checklist 1.5–5; Child Behavior Checklist 6–18  ####

Synonyms CBCL 1.5–5; CBCL 6–18; Child Behavior Checklist 1.5–5; Child Behavior Checklist 6–18  #### Abbreviations | Abbreviation | Full Name | |---|---| | ASD | Autism spectrum disorder | | ADHD | Attention-deficit/hyperactivity disorder | | ASEBA | Achenbach System of Empirically Based Assessment | | CBCL | Child Behavior Checklist | | DSM | Diagnostic and Statistical Manual of Mental Disorders | | K-SADS | Schedule for Affective Disorders and Schizophrenia – Childhood Version |

| ODD | Oppositional defiant disorder | | TRF | Teacher Report Form | | YSR | Youth Self-Report |  #### Description ##### Introduction Youth diagnosed with autism spectrum disorder (ASD) appear to be at significantly higher risk for a co-occurring emotional and/or behavioral disorder relative to the general pediatric popula- tion. According to the Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (DSM-5; American Psychiatric Association [APA] 2013) – approximately 70% of

Disorders-Fifth Edition (DSM-5; American Psychiatric Association [APA] 2013) – approximately 70% of individ- uals with ASD are likely to have one and 40% two or more co-occurring disorders. When ren- dering a diagnosis, the DSM-5 now requires evaluators to specify whether ASD is accompa- nied by a co-occurring mental or behavioral dis- order, which oftentimes requires specific treatment. Therefore, there is a need for reliable and valid measures of emotional and behavioral disorders for youth

there is a need for reliable and valid measures of emotional and behavioral disorders for youth with ASD. The Achenbach System of Empirically Based Assessment (ASEBA) consists of several norm- referenced paper and pencil rating scales that were developed to assess for adaptive competen- cies and a broad range of emotional and behav- ioral disorders in children and adolescents. Two forms are available for parents: the Child Behav- ior Checklist 1.5–5 (CBCL 1.5–5; Achenbach and Rescorla 2000)

for parents: the Child Behav- ior Checklist 1.5–5 (CBCL 1.5–5; Achenbach and Rescorla 2000) which is used for children aged 1.5–5 years and the Child Behavior Check- list 6–18 (CBCL 6–18; Achenbach and Rescorla 2001) which is used for youth aged 6–18 years. Three other forms are also available: the Care- giver/Teacher Report Form for 1.5–5-year-olds, the Teacher Report Form (TRF) for 6–18-year- olds, and a Youth Self-Report (YSR) for 11–18- year-olds. The various forms that comprise the ASEBA

olds, and a Youth Self-Report (YSR) for 11–18- year-olds. The various forms that comprise the ASEBA system allow for data integration across multiple informants which provides an under- standing of whether and how emotional and/or behavioral disorders manifest across settings. These scales have been normed in many socie- ties around the world, and they reflect one of the best studied measures developed for youth (see Berube and Achenbach 2015). These rating scales assess for emotional and

developed for youth (see Berube and Achenbach 2015). These rating scales assess for emotional and behavioral disor- ders that are most often observed in youth with ASD such as anxiety, depression, withdrawal, social problems, attention problems, and aggression. This review focuses on the emotional and behavioral disorder scales of the CBCL 1.5–5 and CBCL 6–18. These ASEBA scales have received the most attention in studies of youth with ASD. Empirical data suggest that these two measures have

most attention in studies of youth with ASD. Empirical data suggest that these two measures have utility for the assessment of co-occurring disorders in this population.  ##### CBCL Scales The CBCL 1.5–5 and the CBCL 6–18 contain items pertaining to specific emotional and behav- ioral responses. Parents rate each item according to how true each statement is about their child: 0 “Not true,” 1 “Somewhat or sometimes true,” or 2 “Very true or often true.” Additionally, several open-ended items

or sometimes true,” or 2 “Very true or often true.” Additionally, several open-ended items allow respondents to provide additional information that may be important for an evaluator to know about the child. The CBCL 1.5–5 ratings describe a child’s functioning during the last 2 months, and ratings on the CBCL 6–18 describe functioning during the past 6 months. Administration time is generally 10–20 min. Each measure can be scored by hand or by ASEBA software. The CBCL 1.5–5 and CBCL 6–18 each

min. Each measure can be scored by hand or by ASEBA software. The CBCL 1.5–5 and CBCL 6–18 each contain two sets of scales: the empirically derived and DSM-oriented scales. The empirically derived scales were developed through factor analysis of data collected from a United States standardization sample. Both the CBCL 1.5–5 and the CBCL 6–18 contain two kinds of empirically derived scales. The “narrowband,” or syndrome scales, assess a wide range of specific emotional and behavioral syndromes

“narrowband,” or syndrome scales, assess a wide range of specific emotional and behavioral syndromes (e.g., attention problems, social prob- lems, aggressive behavior). The “broadband” scales are called the Internalizing Domain and Externalizing Domain which assess for broader classes of emotional (internalizing) and behavioral (externalizing) disorders. The DSM-oriented scales were conceptually derived and were meant to cor- respond to broad diagnostic categories in the Diag- nostic and

derived and were meant to cor- respond to broad diagnostic categories in the Diag- nostic and Statistical Manual of Mental Disorders- Fourth Edition (DSM-IV; APA 1994). These scales were recently updated to be more consistent with the DSM-5 (APA 2013), and this is discussed below. The empirically derived and DSM-oriented scales are both norm referenced. Scale scores can be plotted on profiles that allow clinicians to readily examine relative scale elevations across several problem areas.  The

allow clinicians to readily examine relative scale elevations across several problem areas.  The CBCL 1.5–5 and CBCL 6–18 are scored and interpreted similarly. The raw scores for items within each of the empirically derived and DSM- oriented scales are summed and converted to norm-referenced T-scores (M = 50, SD = 10). A Total Problems T-score is also available and is determined by the sum of all item scores. One set of norms is provided for the CBCL 1.5–5, and separate norms are provided for

item scores. One set of norms is provided for the CBCL 1.5–5, and separate norms are provided for each gender within the 6–11 and 12–18 year age ranges on the CBCL 6–18. “Clinically significant” eleva- tions are indicated by T-scores ≥ 64 on the broad- band scales and ≥ 70 on the syndrome scales. “Borderline” elevations range from 60 to 63 and 65 to 69 on the broadband and narrowband syn- drome scales, respectively. These qualitative cat- egories reflect symptom severity, and scores falling

scales, respectively. These qualitative cat- egories reflect symptom severity, and scores falling within either category suggest the need for a diagnostic assessment.  #### Historical Background ##### Studies of the CBCL in ASD Samples Most studies of the CBCL in samples of youth with ASD examined the extent to which the syn- drome and broadband scales discriminated between those with and without ASD. Significant methodological differences were observed across these studies that included varied

ASD. Significant methodological differences were observed across these studies that included varied approaches to confirming an ASD diagnosis, whether the youth were evaluated for a co-occurring disorder, the clinical status and characteristics of non-ASD comparison groups (e.g., typically developing, those with non-ASD developmental disorders or psychiatric disorders), and the specific ASEBA measure used (e.g., see Biederman et al. 2010; Bolte et al. 1999; Duarte et al. 2003; Hurtig et al. 2009;

used (e.g., see Biederman et al. 2010; Bolte et al. 1999; Duarte et al. 2003; Hurtig et al. 2009; Kanne et al. 2009; Ooi et al. 2010). One consistent finding that emerged from these studies was that youth with ASD often scored signifi- cantly higher than youth without ASD across sev- eral scales. Many times youth with ASD scored significantly higher than comparison groups on the Withdrawn/Depressed, Social Problems, and Thought Problems scales. However, it is not clear whether scale elevations

Social Problems, and Thought Problems scales. However, it is not clear whether scale elevations were related to the pres- ence of co-occurring emotional and behavioral disorders rather than the ASD. Base rate informa- tion on specific CBCL profiles would be helpful to understand how unique such profiles are to the ASD population because recent studies indicated that the CBCL scales are not measures of ASD- related behavior (see Magyar and Pandolfi 2017; Pandolfi et al. 2014).  Although more

of ASD- related behavior (see Magyar and Pandolfi 2017; Pandolfi et al. 2014).  Although more empirical data are needed, sev- eral recent studies provided psychometric support for the CBCL 1.5 and CBCL 6–18 as reliable and valid measures of emotional and behavioral dis- orders in youth with ASD (see Magyar and Pandolfi 2017; Pandolfi et al. 2012, 2014). The results supported the unidimensionality of nearly all CBCL 1.5–5 and CBCL 6–18 empirically derived syndrome scales, which indicated that each

nearly all CBCL 1.5–5 and CBCL 6–18 empirically derived syndrome scales, which indicated that each scale measured one construct. The lone exception was the CBCL 1.5–5 Sleep Problems scale which was found to consist of two factors: dyssomnias and parasomnias. The two factor internalizing-externalizing factor structure was supported for both of these measures, consistent with Achenbach and Rescorla (2000, 2001). Scale reliability was generally good to excellent across the syndrome and broadband

(2000, 2001). Scale reliability was generally good to excellent across the syndrome and broadband scales of each mea- sure, although the reliabilities of the Somatic Complaints (CBCL 1.5–5) and Thought Problems scales (CBCL 6–18) were somewhat lower than desired for a screening measure.  To date, only one study provided evidence on the diagnostic accuracy of the CBCL 6–18 empir- ically derived scales for identifying co-occurring emotional and behavioral disorders in youth with ASD (Pandolfi et

for identifying co-occurring emotional and behavioral disorders in youth with ASD (Pandolfi et al. 2012). All youth were eval- uated for ASD using the Autism Diagnostic Interview- Revised (ADI-R; Rutter et al. 2003) and the Autism Diagnostic Observation Schedule (Lord et al. 2002). Co-occurring psychiatric dis- orders were evaluated through a standardized multi-method assessment protocol which included the Schedule for Affective Disorders and Schizophrenia – Childhood Version (K-SADS; Kaufman et

the Schedule for Affective Disorders and Schizophrenia – Childhood Version (K-SADS; Kaufman et al. 1996), a semi- structured diagnostic interview. In addition to between-group differences across several empiri- cally derived scales (i.e., ASD only vs. ASD + co- occurring emotional and/or behavioral disorders), the CBCL 6–18 demonstrated good sensitivity (>.80) for identifying co-occurring depression, anxiety, attention-deficit/hyperactivity disorder (ADHD), and oppositional defiant disorder (ODD)

anxiety, attention-deficit/hyperactivity disorder (ADHD), and oppositional defiant disorder (ODD) in individuals with ASD. The specific scales with favorable sensitivity were those that were conceptually consistent with the target dis- order under investigation. However, specificity was generally low. A subsequent study on the CBCL 6–18 found that those scales that were purported to assess for emotional problems were not measures of ASD: the vast majority of the individual differences in scores for

problems were not measures of ASD: the vast majority of the individual differences in scores for youth on these scales were related to co-occurring emo- tional disorders, and not to their ASD symptoms (see Pandolfi et al. 2014).  We are aware of only one study on the CBCL 6–18 DSM-oriented scales in youth with ASD (see Magyar and Pandolfi 2017). The only scales evaluated were the Affective Problems (recently renamed Depressive Problems) and Anxiety Prob- lems scales. Findings indicated that each

(recently renamed Depressive Problems) and Anxiety Prob- lems scales. Findings indicated that each of these scales reliably measured a single construct. The scales did not correlate with the ADI-R current behavior algorithm, but they did correlate with the K-SADS. The results indicated that the scales measured what they purported to measure: Affec- tive Problems measured depression and Anxiety Problems measured anxiety. Neither scale appeared to be a measure of ASD-specific prob- lems. With

Problems measured anxiety. Neither scale appeared to be a measure of ASD-specific prob- lems. With respect to diagnostic accuracy, sensi- tivity was acceptable for both scales, and specificity was acceptable for Affective Problems but somewhat low for Anxiety Problems.  Research findings lend support for using the CBCL to assess youth with ASD in clinical and research settings. Replication of findings is needed, especially within important subgroups within the ASD population: such as within specific

is needed, especially within important subgroups within the ASD population: such as within specific age groups, each gender, and those with various levels of autism severity, language impairment, and cog- nitive ability. This would provide much more spe- cific information to assist in the clinical decision- making of those professionals who work with this heterogeneous population, many of whom are often in need of both ASD treatment and specific treatment for co-occurring disorders.  ####

are often in need of both ASD treatment and specific treatment for co-occurring disorders.  #### Psychometric Data ##### Test Development and Psychometric Properties Achenbach and Rescorla (2000, 2001) reported several lines of evidence that supported CBCL scores as indicators of emotional and behavioral disorders in the general population. Although there is close correspondence in the kinds of syn- dromes that are measured by the CBCL 1.5–5 and CBCL 6–18, some differences exist and are detailed

dromes that are measured by the CBCL 1.5–5 and CBCL 6–18, some differences exist and are detailed next.  Factor analyses of test items were used to help construct the empirically derived scales for both measures. For the CBCL 1.5–5, seven first-order factors were identified, and these represented the seven narrowband syndrome scales. Two higher order factors were also identified which reflected the broadband scales. One was called the Inter- nalizing Domain which consisted of four emo- tional

the broadband scales. One was called the Inter- nalizing Domain which consisted of four emo- tional syndromes (i.e., the first-order factors) that were labeled Emotionally Reactive, Anxious/ Depressed, Somatic Complaints, and Withdrawn. The other higher order factor, named the Exter- nalizing Domain, consisted of two behavioral syndromes which were called Attention Problems and Aggressive Behavior. One first-order factor, Sleep Problems, did not belong to either higher order factor.  A slightly

One first-order factor, Sleep Problems, did not belong to either higher order factor.  A slightly different set of syndrome scales was found for the CBCL 6–18. While it too contained two higher order Internalizing and Externalizing Domains, the syndromes that belonged to each were different. The Internalizing Domain contained the Anxious/Depressed, Withdrawn/ Depressed, and Somatic Complaints syndrome scales. The Externalizing Domain contained the Rule-Breaking Behavior and Aggressive Behavior

scales. The Externalizing Domain contained the Rule-Breaking Behavior and Aggressive Behavior syndrome scales. Three other syndrome scales did not belong to either broadband scale: Social Prob- lems, Thought Problems, and Attention Problems. These are considered mixed syndrome scales because they had sizable factor loadings on both broad domains in the Achenbach and Rescorla (2001) factor analyses.  The DSM-oriented scales were initially devel- oped to be conceptually consistent with broad DSM

The DSM-oriented scales were initially devel- oped to be conceptually consistent with broad DSM diagnostic categories. The CBCL 1.5–5 scales included Affective Problems (now called Depressive Problems, see below), Anxiety Prob- lems, Pervasive Developmental Problems (now called Autism Spectrum Problems, see below), Attention Deficit/Hyperactivity Problems, and Oppositional Defiant Problems. The CBCL 6–18 scales included Affective Problems (now called Depressive Problems), Anxiety Problems,

CBCL 6–18 scales included Affective Problems (now called Depressive Problems), Anxiety Problems, Somatic Problems, Attention Deficit/Hyperactiv- ity Problems, Oppositional Defiant Problems, and Conduct Problems. The DSM-oriented scales complement the empirically derived scales to assist practitioners in the differential diagnostic process. Achenbach and Rescorla (2000, 2001) and Achenbach (2014) described scale construc- tion in detail which included experts in child psychology and psychiatry to

scale construc- tion in detail which included experts in child psychology and psychiatry to help devise scale content. The DSM-oriented scales that were con- ceptually aligned with the DSM-IV received much psychometric support (described below), and these scales were recently revised to be con- sistent with the DSM-5.  The revisions featured name changes to some of the scales, and only minor content changes to two of the scales (see Achenbach 2014). On the CBCL 1.5–5, the former Pervasive

content changes to two of the scales (see Achenbach 2014). On the CBCL 1.5–5, the former Pervasive Devel- opmental Problems was renamed Autism Spec- trum Problems, and the scale’s updated content changed only with the deletion of one item. Affec- tive Problems was renamed Depressive Problems on both the CBCL 1.5–5 and CBCL 6–18. On the CBCL 6–18, the Anxiety Problems scale now features three new additional items.  Both test manuals provide several lines of psy- chometric evidence for the

new additional items.  Both test manuals provide several lines of psy- chometric evidence for the empirically derived and DSM-oriented scales. It is noted that the psy- chometric evidence pertaining to the DSM- oriented scales was gathered prior to the recent revision to these scales. The authors substantiated the CBCL’s content validity by citing years of research, clinical experience, and consultation with several stakeholders in children’s mental health assisting in the item selection

consultation with several stakeholders in children’s mental health assisting in the item selection process. Interested readers should consult the technical manuals for more information about the content of specific scales. The data presented in each technical manual indicate that the CBCL 1.5–5 and CBCL 6–18 appear to be sufficiently reliable for clinical use with the general population. The technical man- uals each reported internal consistencies ≥ .89 for the Internalizing and Externalizing

man- uals each reported internal consistencies ≥ .89 for the Internalizing and Externalizing Domains and for Total Problems. For the CBCL 1.5–5, some of the narrowband and DSM-oriented scales had internal consistencies <.70, so it is especially important to interpret these scales in conjunction with other clinical data (see Achenbach and Rescorla 2000). Reported odds ratios for the CBCL 1.5–5 and CBCL 6–18 indicated that those with scale scores in the borderline/clinically significant ranges

and CBCL 6–18 indicated that those with scale scores in the borderline/clinically significant ranges were far more likely to be referred for mental health services than youth with scores below these ranges. A related finding indicated that a sizable percentage of the youth who were referred for mental health services had scores in these elevated ranges. Achenbach and Rescorla (2000, 2001) also presented significant correlations between CBCL scores and DSM diagnoses. These data suggested that youth

significant correlations between CBCL scores and DSM diagnoses. These data suggested that youth with elevated scores on any of the empirically derived or DSM-oriented scales should be referred for a diagnostic assessment.  #### Clinical Uses The CBCL 1.5–5 and CBCL 6–18 appear to have utility in ASD assessment. These measures assess for the kinds of disorders that occur at fairly high rates in youth with ASD. These include depres- sion, anxiety, ADHD, and ODD. The empirically derived syndrome

with ASD. These include depres- sion, anxiety, ADHD, and ODD. The empirically derived syndrome scales assess for disorders that cut across DSM categories. These scales can inform practitioners about the range of possible emotional and/or behavioral disorders that might affect an individual. Because the DSM-oriented scales are conceptually consistent with broad DSM-5 diagnostic categories, they can be used to assist in: (a) further understanding the nature of elevations on the syndrome scales,

be used to assist in: (a) further understanding the nature of elevations on the syndrome scales, (b) screening for specific emotional and/or behavioral disor- ders, or (c) diagnostic decision-making.  The CBCL 1.5–5 and CBCL 6–18 should be considered for routine use in ASD diagnostic assessment. This is particularly important given that the DSM-5 requires specifying whether a youth diagnosed with ASD exhibits co-occurring mental and/or behavioral disorders. For those children who do not

with ASD exhibits co-occurring mental and/or behavioral disorders. For those children who do not initially present with a co-occurring disorder, regular screening through- out childhood should be completed as a means of monitoring for the emergence of one or more emotional or behavioral disorders. This is partic- ularly so for critical developmental periods such as the later part of early childhood where difficul- ties with attention and impulsivity may interfere with full participation in an

where difficul- ties with attention and impulsivity may interfere with full participation in an inclusive school set- ting and in adolescence where increasing self- awareness might increase risk for depression and anxiety. Early detection is critical to informing treatment planning specific to the disorder of interest. Without appropriate treatment, the co-occurring disorder might result in additional personal distress and functional impairment for the affected child which might moderate response

personal distress and functional impairment for the affected child which might moderate response to ASD-specific treatment. This could result in more restrictive interventions and/or placement, neither of which necessarily addresses the under- lying emotional or behavioral disorder. Including the CBCL in ASD intervention progress monitor- ing can help evaluate the child’s response to any interventions that may be implemented. Finally, the CBCL may play an important role in eligibility

interventions that may be implemented. Finally, the CBCL may play an important role in eligibility determination for educational and social services.  ### Child Psychotherapy  #### Synonyms *   Clinical psychology; Mental health interventions  #### Definition A therapeutic interaction between a child (the client) and a trained therapist to alleviate the child’s distress and improve functioning in every- day life. Child psychotherapy is provided by licensed clinicians (e.g., clinical

in every- day life. Child psychotherapy is provided by licensed clinicians (e.g., clinical psychologists, clinical social workers, child and family coun- selors) using a range of therapeutic approaches and strategies in order to alter feelings, thoughts, attitudes, or behaviors. The broad goals of therapy are to improve adjustment and functioning in both intrapersonal and interpersonal spheres and to reduce maladaptive behaviors. Often more spe- cific goals are set for individual clients,

and to reduce maladaptive behaviors. Often more spe- cific goals are set for individual clients, depending on the therapeutic modality employed (e.g., Behavior Therapy). Child psychotherapy can include the child’s parents as well as other signif- icant members of the child’s family and community.  ### Child-Centered Approaches  #### Definition In the National Research Council’s report, Edu- cating Children with Autism, the counsel char- acterizes child-centered approaches as those in which,

Children with Autism, the counsel char- acterizes child-centered approaches as those in which, “Children’s preferences guide the selec- tion of materials; adults provide support and encourage, but do not require, that materials are used and activities are carried out in the desired way. Rather than adult-supplied consequences for certain behaviors, internal, naturally occur- ring reinforcers are assumed to provide the moti- vation for learning” (National Research Council [NRC] 2001, p. 136).

assumed to provide the moti- vation for learning” (National Research Council [NRC] 2001, p. 136). However, other authors note that some children may not learn skills following a “typical” developmental progression and may not provide sufficiently diverse inter- ests to allow educators to follow a child’s inter- ests and therefore may be challenged to teach across variety of priority areas (Volkmar and Wiesner 2009). Volkmar and Wiesner (2009) also note that there is relatively less research on

and Wiesner 2009). Volkmar and Wiesner (2009) also note that there is relatively less research on developmental, child-centered approaches than behavioral approaches, and effective implemen- tation of child-centered approaches likely require highly skilled interventionists. The National Research Council (2001) suggested that for children with fewer appropriate initia- tions, a behavioral approach may be more appro- priate than a child-centered approach and noted that more research is needed to

may be more appro- priate than a child-centered approach and noted that more research is needed to demonstrate the effectiveness of child-centered approaches and relative effectiveness compared to other approaches. In contrast, a child-centered app- roach may be appropriate for children with a variety of interests, thus facilitating teaching across a variety of skills.  ### Childhood Aphasia  #### Synonyms *   Congenital aphasia; Developmental dysphasia; Language disorder; Specific language

#### Synonyms *   Congenital aphasia; Developmental dysphasia; Language disorder; Specific language impairment  #### Definition Aphasia is derived from the Greek word aphatos, meaning “speechless,” and is characteristically used to describe the profile of language impair- ments seen in adults after a stroke or other focal neurological lesion. In the early nineteenth century, physicians and neurologists such as Gall (1935, cited in De Montfort Supple 2010) described seem- ingly similar language

such as Gall (1935, cited in De Montfort Supple 2010) described seem- ingly similar language impairments in children. These children could not speak but had apparently normal understanding of language and did not appear to have general cognitive impairments. The term congenital aphasia was first used by Vaisse in 1866 (cited in De Montfort Supple 2010), and related terms such as developmental aphasia or dysphasia were widely used until the mid-twentieth century. The assumption behind the use of

or dysphasia were widely used until the mid-twentieth century. The assumption behind the use of these terms was that the neurobiological source of language impairment in children was similar to adult case; however, in recent years, it has become clear that most developmental lan- guage disorders do not arise from focal neurologi- cal insults. Instead, anomalies in brain development are subtle and not deterministic of language ability. There is also considerable evidence that the etiol- ogy of

not deterministic of language ability. There is also considerable evidence that the etiol- ogy of developmental language disorders is more typically genetic, rather than the result of acquired brain damage (Bishop 2009). Finally, most investi- gators would agree that the boundary between lan- guage impairment and normality is somewhat arbitrary, rendering the use of a “medical” term or “disease” category inappropriate (Norbury et al. 2008). The notion that language could be impaired in the

category inappropriate (Norbury et al. 2008). The notion that language could be impaired in the context of “spared” capacities in other aspects of development led to labels such as specific lan- guage impairment (SLI) replacing dysphasia. How- ever, in practice, it is rare to see such discrete linguistic impairments in a developing child, and there is continuing controversy about how best to describe children with more specific language dif- ficulties (Bishop 2010). In addition, there is consid-

children with more specific language dif- ficulties (Bishop 2010). In addition, there is consid- erable debate about the nature of language impairment in autism spectrum disorders and whether some children with ASD also have a comorbid SLI (Tomblin 2011). In practice, it is preferable to describe the nature of the child’s lan- guage difficulties in detail without recourse to diag- nostic labels that make assumptions about etiology.  ### Childhood Autism Rating Scale  #### Abbreviations *   ASD

make assumptions about etiology.  ### Childhood Autism Rating Scale  #### Abbreviations *   ASD Autism spectrum disorder *   TEACCH Treatment and education of autistic and communication related handicapped children  #### Synonyms *   CARS; CARS, Second Edition, High- Functioning Version; CARS, Second Edition, Questionnaire for Parents or Caregivers; CARS, Second Edition, Standard Version; CARS2-HF; CARS2-QPC; CARS2-ST  #### Description The CARS has a long-standing history as one of the most

CARS2-QPC; CARS2-ST  #### Description The CARS has a long-standing history as one of the most widely used diagnostic instruments for ASD. A trained observer rates an individual’s behavior on 14 items and provides a general impressions score, each of which is rated on a 7-point Likert scale (1–4 with ½ points). Scores represent severity of deviation compared to expectations for one’s peers of the same chrono- logical age: a score of 1 represents functioning within normal limits, whereas a score

same chrono- logical age: a score of 1 represents functioning within normal limits, whereas a score of 4 repre- sents severely abnormal functioning. The CARS total score ranges from 15 to 60 with higher scores indicating a higher probability or severity of autism. The CARS was intended to be used regardless of age or level of functioning. In 2010, the CARS was refined, and separate forms were created based on a person’s developmental level. The CARS2-HF was developed for use with individuals

based on a person’s developmental level. The CARS2-HF was developed for use with individuals over age 6 years, with IQs above 80, and intact verbal communication skills. The CARS2-ST (which is identical to the original CARS) continues to be used for all children under age 6 years and for individuals over age 6 years either with IQ scores of 79 or lower, or who have impaired communication skills (Schopler et al. 2010).  The 14 behavior domains from the CARS and maintained on the CARS2-ST include

et al. 2010).  The 14 behavior domains from the CARS and maintained on the CARS2-ST include (1) relating to people; (2) imitation; (3) emotional response; (4) body use; (5) object use; (6) adaptation to change; (7) visual response; (8) listening response; (9) taste, smell, and touch response and use; (10) fear or nervousness; (11) verbal communication; (12) nonverbal communication; (13) activity level; (14) level and consistency of intellectual response; in addition to (15) general impressions.

(14) level and consistency of intellectual response; in addition to (15) general impressions. The CARS2-HF maintains the gen- eral structure of the CARS, but it does not include imitation and activity level. Instead, it adds social-emotional understanding and thinking/cog- nitive integration skills. Behavioral descriptions of several other items were also modified to be more applicable for individuals with a higher IQ (Schopler et al. 2010). When rating each domain, a rater considers the

individuals with a higher IQ (Schopler et al. 2010). When rating each domain, a rater considers the peculiarity, frequency, inten- sity, and duration of a behavioral concern. Brief descriptions of the behaviors to be observed are provided as anchors on the rating forms, but a more detailed description, including a definition and particular considerations for each item, is provided in the CARS2 manual.  The CARS2-QPC is a new form in the second edition. It is an unscored questionnaire completed

The CARS2-QPC is a new form in the second edition. It is an unscored questionnaire completed by others who know the person being evaluated well. The CARS2-QPC can also provide informa- tion about a person’s early development, which is not captured by the behavioral observations on the CARS2-ST and CARS2-HF, and provide exam- ples of behavior concerns that the parent or care- giver notices. Schopler et al. (2010) stated that parents or other caregivers are not to complete either the CARS2-ST or

et al. (2010) stated that parents or other caregivers are not to complete either the CARS2-ST or CARS2-HF but should provide information on the CARS2-QPC, which can then be used as a guide during a diagnostic or other direct interview.  The CARS surveys a wide range of behaviors. These behaviors related to different conceptuali- zations of ASD at the time the CARS was devel- oped, but not all of them relate to the DSM-IV-TR or to an earlier predecessor, the DSM-III-R. Although an interested

of them relate to the DSM-IV-TR or to an earlier predecessor, the DSM-III-R. Although an interested user could compare an individual’s score on specific items to any of the diagnostic criteria on which the CARS is based, including the DSM-IV, a weighted score based on the current conceptualization of ASD is not available.  #### Historical Background The CARS was developed by Dr. Eric Schopler and colleagues in North Carolina to complement their outpatient treatment program, Division TEACCH. It

colleagues in North Carolina to complement their outpatient treatment program, Division TEACCH. It was included as part of their diag- nostic process and educational planning, often being completed as part of the Psycho-educational Profile. Prior to its inception in DSM-III (American Psychiatric Association 1980), there were multiple definitions and diagnostic criteria for what is called ASD today. Schopler and col- leagues developed the CARS as their own rating system to distinguish between ASD

Schopler and col- leagues developed the CARS as their own rating system to distinguish between ASD and other developmental disorders (Reichler and Schopler 1971; Schopler et al. 1980) in an effort to over- come limitations of existing classification systems and diagnostic measures. The CARS was origi- nally called the Childhood Psychosis Rating Scale because it had a broader conceptualization than Kanner’s original definition of autism. The name was changed to the CARS as the definition of autism

Kanner’s original definition of autism. The name was changed to the CARS as the definition of autism expanded beyond Kanner’s strict definition. The behavior domains of the CARS are largely based on the British Working Party’s diagnostic criteria for childhood psychosis (Reichler and Schopler 1971), but it also includes items based on Kanner’s primary features of autism and the criteria proposed by Rutter and by Ritvo and Freeman (Schopler et al. 1980, 1988). Although most items were chosen

by Rutter and by Ritvo and Freeman (Schopler et al. 1980, 1988). Although most items were chosen because of their relation to the diagnostic criteria at the time, others were included because of their clinical or educational relevance (e.g., object use, visual response, audi- tory response, and taste, smell, and touch response and use). From the time it was developed, the CARS was integrated with the TEACCH program to integrate assessment and intervention.  #### Psychometric Data The CARS

with the TEACCH program to integrate assessment and intervention.  #### Psychometric Data The CARS classifies a person as having minimal-to- no symptoms of ASD, mild-to-moderate symptoms, or severe symptoms of an ASD. Classification cut- offs were originally determined by examining the distribution of CARS scores in a sample of 537 chil- dren. Initially, a cutoff of 30 distinguished optimally between those with and without ASD (Schopler et al. 1980). However, the recommended cutoff scores have

those with and without ASD (Schopler et al. 1980). However, the recommended cutoff scores have changed with time and now vary by age and CARS2 form.  In the development sample, the cutoff of 30 on the CARS had a sensitivity of .88 and specificity of .86 (Schopler et al. 1988). Other studies have found similar results with children. Some researchers, however, have recommended higher cutoffs for very young children and lower cutoffs for adolescents and adults. In one large study, a cutoff of 30

young children and lower cutoffs for adolescents and adults. In one large study, a cutoff of 30 was supported among 4-year-olds, but a cutoff of 32 was optimal among 2-year- olds, since this resulted in better specificity (Chlebowski et al. 2010).  On the CARS2-ST, the cutoff of 30 was maintained for all children under age 13 years, but a cutoff of 28 best distinguished between minimal-to-no symptoms of ASD and mild-to- moderate symptoms of an ASD for children over age 13 years. The CARS2-HF

of ASD and mild-to- moderate symptoms of an ASD for children over age 13 years. The CARS2-HF also uses a cutoff of 28 to distinguish between minimal-to-no symp- toms of ASD and mild-to-moderate symptoms of an ASD. In the CARS2-HF development sample, this resulted in a sensitivity of .81 and a specificity of .87 (Schopler et al. 2010).  The CARS is strongly related to level of func- tioning. It may falsely identify individuals with language impairments and cognitive impairments as having an ASD.

falsely identify individuals with language impairments and cognitive impairments as having an ASD. This may be acceptable clini- cally for diagnostic screening but not for research requiring precise diagnostic distinctions. The magnitude of the correlations between intellectual and adaptive functioning and CARS scores is quite high (approximately r = .7). Although the CARS2-HF was developed to address this weak- ness, its relationship with IQ has not been researched at the time of this writing.

this weak- ness, its relationship with IQ has not been researched at the time of this writing.  The CARS has demonstrated good concordant validity with clinical judgment and with other ASD diagnostic instruments, including the Autism Diagnostic Interview-Revised, and the Autism Diagnostic Observation Schedule. It has also shown good convergence with ASD rating scales, including the Autism Behavior Checklist, Real-Life Rating Scale, and the Social Respon- siveness Scale.  Evidence for the

Checklist, Real-Life Rating Scale, and the Social Respon- siveness Scale.  Evidence for the reliability and validity of the CARS was originally presented by Schopler et al. (1980) for 537 children assessed over a 10-year span as part of the TEACCH program. Internal consistency was .94. Other investigators have rep- licated this high level of internal consistency for the CARS and the CARS2-ST. Among the 994 participants in the CARS2-HF development sample, coefficient alpha was .96. However, sev-

the 994 participants in the CARS2-HF development sample, coefficient alpha was .96. However, sev- eral investigations of the CARS have found neg- ative corrected item-total correlations, specifically for the consistency of intellectual response item.  Early investigations of inter-rater reliability focused on ratings made by other professionals without specialized training in ASD (Schopler et al. 1988). These and subsequent evaluations of inter-rater reliability have found high agree- ment on

1988). These and subsequent evaluations of inter-rater reliability have found high agree- ment on diagnostic classifications but lower agreement on specific items. Schopler et al. (2010) found similar results with the CARS2-HF development sample.  Test-retest reliability for the CARS has been examined with a range from as little as 3 months to more than 3 years between assessments. Across these studies, CARS scores are relatively stable (rs > .70), though there is some evidence that scores

studies, CARS scores are relatively stable (rs > .70), though there is some evidence that scores decrease over time (e.g., Mesibov et al. 1989). Test-retest reliability has not been evalu- ated for the CARS2-HF at this time.  The CARS has been translated into several languages, including French, Japanese, Swedish, Icelandic, Indian, Spanish, and Korean. Diagnos- tic cutoffs vary for the different versions, but overall, they have shown similar psychometric properties as the CARS. Evidence

versions, but overall, they have shown similar psychometric properties as the CARS. Evidence published in English for internal consistency, inter-rater reli- ability, and diagnostic sensitivity and specificity is available for the Japanese, Swedish, Icelandic, and Indian versions (Nordin et al. 1998; Russell et al. 2010; Saemundsen et al. 2003; Tachimori et al. 2003).  #### Clinical Uses The CARS and the CARS2 were designed to be part of a comprehensive diagnostic evaluation for an ASD.

CARS and the CARS2 were designed to be part of a comprehensive diagnostic evaluation for an ASD. Professionals other than clinicians have been shown to make reliable and valid ratings on the CARS after a modest level of training. The CARS also requires a rater to have some knowl- edge of age-appropriate functioning within each of the behavioral domains. With such training, the tool has been used successfully in clinical and educational settings, as part of a caregiver inter- view, in a chart

successfully in clinical and educational settings, as part of a caregiver inter- view, in a chart review, and as a rating scale. Although it is possible to complete the CARS2- ST based on information from a single source, the CARS2-HF requires that multiple sources of information be considered, one of which must be a direct observation of the person being rated. Multiple sources of information and a behavioral observation are not required for the CARS2-ST but would benefit the diagnostic

and a behavioral observation are not required for the CARS2-ST but would benefit the diagnostic process. It is recommended that direct behavioral observation by the trained observer be given greater weight in scoring than other information if they conflict (Schopler et al. 2010).  Despite being designed to be completed by a trained clinician, the CARS has been used, with or without adaptations, as a parent rating scale. The CARS2 manual recommends that parents do not complete the CARS2-ST or

as a parent rating scale. The CARS2 manual recommends that parents do not complete the CARS2-ST or CARS2-HF as a rating scale. Rather, the unscored CARS2-QPC should be completed, which can guide an inter- view and provide additional developmental information not captured on the CARS as part of the overall diagnostic process. The psycho- metric properties of the CARS, when used as a parent rating scale, have not been adequately studied.  The CARS has also found uses within research studies (see

scale, have not been adequately studied.  The CARS has also found uses within research studies (see Schopler et al. 2010 for examples). It has provided an ASD severity rating or supported an ASD diagnosis. The CARS has also been used as an outcome measure for intervention studies, medication trials, and developmental studies. As an outcome measure, the CARS has shown to be sensitive to treatment effects and to maturational changes.  ### Childhood Psychosis  #### Synonyms *   Childhood

effects and to maturational changes.  ### Childhood Psychosis  #### Synonyms *   Childhood schizophrenia  #### Definition In common use, the term psychosis implies a loss of contact with reality. Typical psychotic phenom- ena include hallucinations (perceiving things that others do not), delusions, and other behaviors (e.g., catatonia). Often individuals with psychosis have trouble structuring their thinking (a thought disorder). In adolescents and adults, psychosis and psychotic phenomena can

thinking (a thought disorder). In adolescents and adults, psychosis and psychotic phenomena can arise because of psychiatric or medical illness or exposure to cer- tain substances (e.g., hallucinogenic drugs). In common use, the term is rather broad including a range of conditions. Psychiatric disorders associ- ated with psychosis include schizophrenia and bipolar type 1 disorder (what previously was termed manic-depressive illness). Psychotic phe- nomena can be seen in various other

previously was termed manic-depressive illness). Psychotic phe- nomena can be seen in various other conditions.  In children, awareness of psychosis and psy- chotic phenomena is a relatively historically recent phenomenon (e.g., until the work of Maudsley in the 1800s, it was assumed children were protected from such phenomena). How- ever, the description of what we now recognize as schizophrenia (or as it was once termed dementia praecox) led to rapid extension to chil- dren (dementia

(or as it was once termed dementia praecox) led to rapid extension to chil- dren (dementia praecosissima (de Sanctis 1906)). Kanner’s use of the term autism (Kanner 1943) quickly led to confusion over the issue of whether we now think of as autism is a form of schizophrenia (see Volkmar and Tsatsanis 2002) since the term autism had earlier been used to describe self-centered thinking in schizophrenia (see Volkmar 1996 for a discus- sion).  It took several decades before it became clear that

(see Volkmar 1996 for a discus- sion).  It took several decades before it became clear that this was not in fact the case and that autistic disorder was a distinctive condition (Kolvin 1971; Rutter 1972). Given the major changes in children’s under- standing of reality, the term psychosis can be problematic in childhood. Before puberty, the pro- totypic psychotic disorder, schizophrenia, is pro- foundly uncommon although psychotic phenomena can be observed, e.g., in relation to stress, or as

foundly uncommon although psychotic phenomena can be observed, e.g., in relation to stress, or as isolated phenomena. After age 5, the presence of psychotic symptoms is more concerning, and various factors (medical condi- tions, drug abuse) can produce such symptoms.  ### Childhood Schizophrenia  #### Synonyms *   Pediatric onset schizophrenia; Very early-onset schizophrenia  #### Short Description or Definition Childhood-onset schizophrenia is defined by onset of psychosis before age 13 and is

or Definition Childhood-onset schizophrenia is defined by onset of psychosis before age 13 and is diagnosed using unmodified DSM-IV criteria for diagnosis of adult-onset schizophrenia.  #### Categorization Although the existence of childhood schizophre- nia was recognized since early in the twentieth century (Kraepelin 1919; Nicolson and Rapoport 1999), the nosological status of schizophrenia in children was controversial for many years, and the Diagnostic and Statistical Manual of Mental Dis-

children was controversial for many years, and the Diagnostic and Statistical Manual of Mental Dis- orders, Second Edition (DSM-II) category “child- hood schizophrenia” included other psychotic disorders in children, as well as autistic disorder, thus limiting the usefulness of early studies. The landmark studies by Kolvin (Kolvin 1971; Kolvin et al. 1971a, b, c, d, e), however, clearly differen- tiated schizophrenia with oxnset in childhood from pervasive developmental disorders, and sub-

tiated schizophrenia with oxnset in childhood from pervasive developmental disorders, and sub- sequent research over the years has established the clinical and neurobiological continuity between the childhood- and adult-onset schizophrenia. Thus, COS is more appropriately categorized as the childhood counterpart of the typical adult- onset illness (Gogtay 2008).  #### Epidemiology COS is rare and difficult to diagnose. As a result, it is hard to estimate the exact incidence. Fur- thermore, even

difficult to diagnose. As a result, it is hard to estimate the exact incidence. Fur- thermore, even today, high rates of misdiagnosis remain as transient psychotic symptoms can occur in healthy children (Caplan 1994; McGee et al. 2000; Schreier 1999), and fleeting halluci- nations are not uncommon in nonpsychotic pedi- atric patients (Lukianowicz 1969; McKenna et al. 1994b) particularly in response to anxiety and stress (Rothstein 1981). Fully developed psychotic disorders in children, however,

to anxiety and stress (Rothstein 1981). Fully developed psychotic disorders in children, however, are rare and tend to be more severe than their adult counterparts (Childs and Scriver 1986), and recent data suggest that psychotic symptoms probably exist as a continuous phenotype rather than an all-or-none phenomenon (Poulton et al. 2000).  Based on the NIMH COS study experience (described later), where over the past 20 years, we have evaluated over 3,000 referrals with a potential diagnosis of

where over the past 20 years, we have evaluated over 3,000 referrals with a potential diagnosis of schizophrenia. However, diagnosis could be confirmed only in 122 cases to date after careful evaluation, which included inpatient observation and complete medication washout in most cases. These estimates put the approximate incidence to be about 1/300th of the adult-onset illness.  #### Natural History, Prognostic Factors, and Outcomes Most reports on the natural history and course of COS come

Prognostic Factors, and Outcomes Most reports on the natural history and course of COS come from the NIMH longitudinal study of COS. Since 1990, children with early-onset psycho- sis have been recruited nationally for diagnostic screening for COS at the NIMH. Diagnosis of COS is confirmed after an extensive evaluation, which includes inpatient observation during a 3-week drug washout period. To date, 118 patients have participated in the study, including 43 boys and 31 girls with a mean age of

118 patients have participated in the study, including 43 boys and 31 girls with a mean age of 14.06 + 2.67 years and mean age of onset of psychosis at 10.07 + 1.9 years. Once the diagnosis is confirmed, a structural brain MRI scan is obtained with pro- spective re-scans at 2-year intervals.  The general outcome remains poor with most COS children continuing to show residual symp- toms: both cognitive deficits and/or psychotic symptoms. In a recent analysis, at 2-year follow- up, almost 75% of

deficits and/or psychotic symptoms. In a recent analysis, at 2-year follow- up, almost 75% of COS patients still reported either positive or negative residual symptoms (Greenstein et al. 2008). The clinical course, in general, tends to be non-episodic (unlike that for the adult illness), chronic, and treatment refrac- tory with most children ending up on clozapine (discussed under treatment).  Although there are no specific factors that can be detected in COS either during the premorbid or

Although there are no specific factors that can be detected in COS either during the premorbid or prodromal course of the illness, however, many features are more striking compared to the AOS during this period which are described under pathophysiology.  #### Clinical Expression and Pathophysiology ##### Premorbid Development A striking phenomenological feature of COS rel- ative to adult-onset schizophrenia appears to be the higher rates of early language, social, and motor developmental

schizophrenia appears to be the higher rates of early language, social, and motor developmental abnormalities, possibly reflecting greater impairment in early brain devel- opment. In the NIMH sample, premorbid devel- opment is defined as development prior to 1 year before psychosis onset and assessed using the Cannon-Spoor Premorbid Adjustment Scale (PAS) (Cannon-Spoor et al. 1982) and the Hollis premorbid development scale (Hollis 1995); social and speech and language impairments were the most

premorbid development scale (Hollis 1995); social and speech and language impairments were the most common abnormal features in COS, which was also observed by four other independent research centers (Alaghband-Rad et al. 1995; Asarnow and Ben-Meir 1988; Gogtay et al. 2004b; Green et al. 1992; Hollis 1995; Nicolson et al. 2000; Russell et al. 1989; Watkins et al. 1988).  ##### Risk Factors ###### Obstetric Complications An analysis comparing the obstetric records of 60 COS children and 48

Obstetric Complications An analysis comparing the obstetric records of 60 COS children and 48 healthy siblings using the Columbia Obstetrics Complication Scale (Malaspina 2003), a comprehensive measurement scale consisting of 37 variables, did not find higher incidence of obstetric complications in COS patients compared to the healthy sibling control group (Ordonez et al. 2005).  ###### Eye Tracking Smooth pursuit eye movement (SPEM) disorders have been reported in 25–40% of first-degree

Tracking Smooth pursuit eye movement (SPEM) disorders have been reported in 25–40% of first-degree relatives of schizophrenic probands (Holzman 2000), and other studies have suggested more striking in COS than in AOS with a bilineal pat- tern of inheritance (Ross et al. 1999). In a recent analysis, we compared 70 COS parents, 64 AOS parents, and 20 COS siblings to separate matched control groups and found that the effect sizes for SPEM abnormalities were higher for COS than for AOS relatives,

and found that the effect sizes for SPEM abnormalities were higher for COS than for AOS relatives, indicating that genetic factors underlying eye-tracking dysfunction may be more salient for COS (Sporn et al. 2005b).  ###### Familial Schizophrenia Spectrum Disorders Schizophrenia spectrum disorders consist of schizophrenia and schizoaffective disorders on Axis I and schizotypal, paranoid, and schizoid personality disorders on Axis II (Asarnow and Ben-Meir 1988). A prior study by Asarnow et al.

personality disorders on Axis II (Asarnow and Ben-Meir 1988). A prior study by Asarnow et al. showed higher rates of schizophrenia spectrum diagnoses for COS relatives than for relatives of probands with attention deficit hyperactivity dis- order or community controls (Asarnow et al. 2001). Similarly, as expected in our recent ana- lyses of parental diagnosis in 97 parents of COS probands, 97 parents of AOS probands, and matched community controls, it was also found that rate of schizophrenia

of AOS probands, and matched community controls, it was also found that rate of schizophrenia spectrum disorders was higher in COS than in AOS, and both were higher than community controls supporting the continu- ity between COS and AOS, and more salient familial genetic risk in COS (Nicolson et al. 2003).  ###### Familial Neurocognitive Functioning Cognitive abnormalities, executive functioning, short-term memory, and language function are well documented as endophenotypic measures for family

short-term memory, and language function are well documented as endophenotypic measures for family members in AOS (Egan et al. 2001). Particularly striking have been the decreased per- formance on the Trail Making Test part B (Keefe et al. 1994) and digit span (Tuulio-Henriksson et al. 2002). When we compared neuropsycholog- ical deficits in 67 parents and 24 full siblings of COS probands in comparison with matched com- munity controls for Trail Making Tests A and B and Wechsler Intelligence

with matched com- munity controls for Trail Making Tests A and B and Wechsler Intelligence Scale-Revised Digit Span and Vocabulary, COS siblings performed significantly poorer than community controls although the rates of neuropsychological abnor- malities for COS were not significantly higher than for AOS (Gochman et al. 2004).  ###### Pervasive Developmental Disorder and COS Frequently, the diagnosis of autism or pervasive developmental disorder (PDD) has been raised early in the development in

of autism or pervasive developmental disorder (PDD) has been raised early in the development in our cases, and some studies have claimed that autism per se might be a risk factor for later psychosis (Cantor et al. 1982; Clarke et al. 1989; Petty et al. 1984). In the two large studies examining this systematically, COS is preceded by and comorbid with pervasive developmental disorder in 30–50% of cases. Epi- demiologic and family studies also find associa- tion between the disorders, and both

of cases. Epi- demiologic and family studies also find associa- tion between the disorders, and both disorders have evidence for accelerated trajectories of ana- tomic brain development at ages near disorder onset, and a growing number of shared risk genes and/or rare small chromosomal variants (micro-deletions or duplications). Thus, core neu- robiological processes are likely common for sub- sets of these two heterogeneous clinical groups.  ###### Neurocognitive Functioning in COS Probands

sets of these two heterogeneous clinical groups.  ###### Neurocognitive Functioning in COS Probands Neuropsychological function in COS has been studied in depth by Robert Asarnow and colleagues (Asarnow 1999; Asarnow et al. 1994, 1995). While rote language skills and simple per- ceptual processing are not impaired, these chil- dren perform poorly on tasks involving fine motor coordination, attention, and short-term and work- ing memory (Karatekin and Asarnow 1998). Evoked-potential studies show

and short-term and work- ing memory (Karatekin and Asarnow 1998). Evoked-potential studies show diminished ampli- tude of brain electrical activity during these tasks suggesting that allocation of necessary attentional resources is deficient, which is also shared by schizophrenic adults (Asarnow et al. 1995). It is generally established for adult schizophrenia that cognitive function deteriorates at onset of psycho- sis but remains stable afterward (Goldberg et al. 1993; Russell et al. 1997).

at onset of psycho- sis but remains stable afterward (Goldberg et al. 1993; Russell et al. 1997). Our earlier study had shown that COS children (n = 27) as well as MDI children (n = 24) share similar deficits in atten- tion, learning, and abstraction that resembled the pattern in adult patients with schizophrenia (Kumra et al. 2000). In a recent analysis on 71 COS probands where preadmission IQ data were also available from medical and school record (n = 27), post-psychotic cognitive function

data were also available from medical and school record (n = 27), post-psychotic cognitive function (defined as >3 years of onset) for up to 8+ years was studied. As expected, all COS patients scored significantly below age norms, but for 46 COS patients seen systematically for follow-up, there was no post-psychotic IQ decline. Thus, in spite of greater severity and generally poor clinical outcome, there was no evidence of a longer-term degenerative cognitive process in COS (Gochman et al. 2003).

there was no evidence of a longer-term degenerative cognitive process in COS (Gochman et al. 2003).  ###### Comorbid Disorders Comorbid psychiatric disorders, particularly DSM-defined mood and anxiety disorders, often coexist with schizophrenia (Bermanzohn et al. 2000; Green et al. 2003; Huppert and Smith 2005), although the hierarchical system for DSM limits independent diagnoses of comorbidities (Bermanzohn et al. 2000), and these disorders may often be part of (or masked by) the symptoms of

(Bermanzohn et al. 2000), and these disorders may often be part of (or masked by) the symptoms of the primary illness. Alternatively, it is often assumed that symptoms such as severe anxiety are the result of underlying schizophrenic process and that depressive symptoms are almost inevita- ble in schizophrenia; thus, the diagnoses of inde- pendent Axis I conditions are often ignored (Bermanzohn et al. 2000). However, recent stud- ies indicate that psychiatric comorbidities can sig- nificantly

et al. 2000). However, recent stud- ies indicate that psychiatric comorbidities can sig- nificantly alter the presentation, clinical course, or prognosis of the illness, and thus, accurate diag- noses of comorbidities could have useful implica- tions for disease outcome (Fenton and McGlashan 1986; Huppert et al. 2001).  As no prior studies have reported comorbidities for childhood-onset schizophrenia (COS), we analyzed the prevalence of comorbid Axis I diagnoses in 76 COS cases at the time of

(COS), we analyzed the prevalence of comorbid Axis I diagnoses in 76 COS cases at the time of first NIMH admission, and at 4-year follow-up (n = 28), and correlated the comorbid diagnoses with age of onset of psychosis, clinical ratings of illness severity, familiality for schizo- phrenia spectrum disorders, and early premorbid development. As has been seen with AOS, the most frequent comorbid diagnosis at NIMH screening was depression (54%) followed by obsessive- compulsive disorder (OCD; 21%),

at NIMH screening was depression (54%) followed by obsessive- compulsive disorder (OCD; 21%), generalized anxiety disorder (GAD; 15%), and attention def- icit hyperactivity disorder (ADHD; 15%). The rate of “any” anxiety disorder (GAD, OCD, sep- aration anxiety, PTSD, and panic disorder com- bined) at screening was 42%. Diagnosis of comorbid depression correlated with poorer global assessment of severity (GAS) scores, and presence of an anxiety disorder only predicted anxiety at 4-year

of severity (GAS) scores, and presence of an anxiety disorder only predicted anxiety at 4-year follow-up. No other Axis I diagnoses showed correlations with any clinical measures, and there were no significant associa- tions between comorbid diagnoses and IQ, familiality, medication status, premorbid func- tioning, or age of onset at psychosis. Interestingly, there was no “current” comorbid depression at the 4-year follow-up visit, possibly due to our high use of antidepressant treatment (45%).

at the 4-year follow-up visit, possibly due to our high use of antidepressant treatment (45%). However, the rates of anxiety disorders did not change much at the 4-year follow-up, despite adjuvant anxiety medication use, suggesting either refractory nature of these conditions or their close associa- tion with schizophrenia pathology.  ###### Cortical Development in COS Morphometric studies of COS populations have provided unique insights into schizophrenia brain development. Initial COS studies

populations have provided unique insights into schizophrenia brain development. Initial COS studies using whole lobe volumetric measures showed profound and global GM loss with ventricular expansion in COS (Gogtay 2008; Rapoport et al. 1997, 1999; Rapoport and Inoff-Germain 2000). With novel neuroimaging methodology, finer-scale brain mapping on the longitudinal data revealed that the GM loss in COS had a characteristic back-to- front (parieto-frontal-temporal) pattern of spread during

loss in COS had a characteristic back-to- front (parieto-frontal-temporal) pattern of spread during adolescent years (Thompson et al. 2001).  which appears to be an exaggeration of the healthy GM developmental pattern (Gogtay et al. 2004a), perhaps reflecting lack of inhibitory controls on the normal maturational GM loss (Schoop et al. 1997; Sowell et al. 2001). As the children mature and become young adults, the GM loss appears to slow down and get circumscribed to prefrontal and temporal

young adults, the GM loss appears to slow down and get circumscribed to prefrontal and temporal cortices and merging into the adult schizophrenia pattern (Greenstein et al. 2006), establishing the neurobiological continuity between the two counterparts of the illness. The GM deficits in schizophrenia may reflect a disease process that is pronounced earlier in the illness and/or at an earlier age, perhaps reflecting a stronger genetic vulnerability interacting with the early brain developmental

perhaps reflecting a stronger genetic vulnerability interacting with the early brain developmental windows (Pantelis et al. 2003) and exaggerated (dysregulated) neurodevelopment (Lieberman 1999; Lieberman et al. 2005; Woods 1998). It is also possible that the structural GM differences are most dynamic in the first years around psychosis onset and then vary with the illness over time perhaps influenced by other environmental or illness-related factors such as medication exposure. Indeed a similar

by other environmental or illness-related factors such as medication exposure. Indeed a similar pattern of brain changes has also been tracked as psychosis develops in those at risk (Pantelis et al. 2007).  The diagnostic specificity of the GM trajecto- ries was explored by comparing individuals with COS and children who were “ruled out” as having schizophrenia (Kumra et al. 1998). A surprising 40% of those followed longitudinally from this group converted to bipolar I disorder and had pre- post

of those followed longitudinally from this group converted to bipolar I disorder and had pre- post onset scans. The developmental trajectories for bipolar I children (with psychosis) showed a subtle but distinct pattern of cortical GM gain in left temporal cortex and loss in right temporal and bilateral subgenual cingulate cortices, pattern that has no overlap with that seen for COS (Gogtay et al. 2007b). These observations point toward diagnostic specificity of the GM findings in COS (Gogtay et

2007b). These observations point toward diagnostic specificity of the GM findings in COS (Gogtay et al. 2007a; b).  These studies still do not address the effects of medications on “longitudi- nal” GM trajectories, but a recent analysis com- paring GM development between COS subjects treated with clozapine and those with olanzapine showed no differences in GM trajectories (Mattai et al. 2010). Further studies are needed correlating medication exposure as a continuous measure with brain

Further studies are needed correlating medication exposure as a continuous measure with brain development, or on unmedicated sub- jects to address this question.  GM abnormalities in schizophrenia may be, at least in part, familial/trait markers (Cannon et al. 2003; Gilbert et al. 2003; Weinberger and McClure 2002; Yucel et al. 2003). We have extended this question in our studies to ask whether GM “trajectories,” rather than deficits, are endophenotypes, indicting dysregulation of development as

“trajectories,” rather than deficits, are endophenotypes, indicting dysregulation of development as the crucial defect. Longitudinal GM findings in 52 healthy full siblings of COS patients showed initial cortical GM deficits which not only did not progress during adolescence (unlike their COS probands) but nor- malized by age 20. A recent analysis using 47 non-overlapping healthy siblings matched with 48 non-overlapping healthy controls repli- cated these findings (Mattai et al. 2011). Several

with 48 non-overlapping healthy controls repli- cated these findings (Mattai et al. 2011). Several inferences can be drawn from these findings. First, the pattern of “improving GM deficits” and the localization to “prefrontal and superior temporal areas” in both COS probands and siblings point toward overall similarities in the patterns of GM development in both groups where healthy sib- lings show a more time limited “shift to the left” compared to the COS probands (earlier deficits which are

a more time limited “shift to the left” compared to the COS probands (earlier deficits which are corrected before adulthood). Second, this points to protective/restitutive factors in sib- ling brain development, which could relate to functional outcome (Gogtay et al. 2007a). Finally, absence of parietal deficits in healthy siblings may indicate that parietal deficits require a nongenetic trigger as supported by twin studies of adult-onset cases (Cannon et al. 2002).  The profound GM loss in COS

supported by twin studies of adult-onset cases (Cannon et al. 2002).  The profound GM loss in COS could, in the- ory, be only a perceived loss resulting from the encroachment of continued white matter growth, a process that extends through at least the fourth decade (Benes 1993; Benes et al. 1994; Sowell et al. 1999). New findings using tensor-based morphometry (TBM) showed that COS patients actually had up to 2% slower WM growth rates per year than healthy controls (p = 0.02, all p-values

actually had up to 2% slower WM growth rates per year than healthy controls (p = 0.02, all p-values corrected), with greater effect sizes in the right hemisphere (p = 0.006) (Gogtay et al. 2008); thus, progressive GM deficits seen in COS do not appear secondary to WM growth (Gogtay 2008).  ###### Genetic Studies While rare copy number variants (CNVs) have been found to be increased for our COS popula- tion (Walsh et al. 2008), only two variants (16p11.2 and 22q11) have shown a unique ana- tomic

tion (Walsh et al. 2008), only two variants (16p11.2 and 22q11) have shown a unique ana- tomic brain profile (McCarthy et al. 2009; Usiskin et al. 1999). Recently, genome-wide expression analyses of brain tissue from varied postnatal ages indicated that schizophrenia susceptibility genes are overrepresented during frontal cortical devel- opment (Choi et al. 2009; Harris et al. 2009; Webster et al. 2010; Wong et al. 2009). However, given the large number of weak genetic and envi- ronmental risk

2010; Wong et al. 2009). However, given the large number of weak genetic and envi- ronmental risk factors and increasing evidence for the dimensional nature of psychosis (Polanczyk et al. 2010), it seems more and more likely that schizophrenia represents a continuum of risk involving many factors.  For example, a recent population study found a ninefold risk of schizo- phrenia if the presence of a parent with psychosis was combined with maternal depression during pregnancy (Maki et al. 2010).

a parent with psychosis was combined with maternal depression during pregnancy (Maki et al. 2010). Other studies have documented other gene-environmental interac- tions such as that between genetic risk and urban birth (van Os et al. 2004).  #### Evaluation and Differential Diagnosis COS is difficult to diagnose as symptoms of psy- chosis appear very early in a child’s life and are difficult to tease apart from other childhood phe- nomena such as normal imaginative play, behav- iors generated by

apart from other childhood phe- nomena such as normal imaginative play, behav- iors generated by situations or due to secondary gain. Hallucinations are not uncommon in other- wise healthy children although they tend to be more serious in school-age children (Polanczyk et al. 2010; Poulton et al. 2000).  Fully developed psychotic disorders in children, however, are rare and tend to be more severe than their adult counterparts (Childs and Scriver 1986), and recent data suggest that psychotic

than their adult counterparts (Childs and Scriver 1986), and recent data suggest that psychotic symptoms probably exist as a continuous phenotype rather than an all-or-none phenomenon (Poulton et al. 2000).  The disorders most commonly misdiagnosed as childhood-onset schizophrenia are: 1.  Severe anxiety can lead to hallucination in children. 2.  Affective disorders: Hallucinations are rela- tively common in pediatric bipolar disorder and major depression (Chambers et al. 1982; Varanka et al.

common in pediatric bipolar disorder and major depression (Chambers et al. 1982; Varanka et al. 1988). However, the psychotic symptoms in these conditions tend to be mood congruent, and follow-up studies on this pop- ulation generally suggest a stable clinical out- come (Garralda 1984a; McClellan and McCurry 1999; McClellan et al. 1999; Ulloa et al. 2000). 3.  Organic psychosis and substance abuse disor- ders (may mimic withdrawal states or negative symptoms) (Caplan et al. 1991; Garralda

abuse disor- ders (may mimic withdrawal states or negative symptoms) (Caplan et al. 1991; Garralda 1984b). 4.  Pervasive developmental disorders and child- hood disintegrative disorder. 5.  Children with conduct disorder and various other behavioral disturbances can show hallu- cinations (Garralda 1984a, b). 6.  The atypical psychosis group provisionally labeled as “multidimensionally impaired (MDI)” is an important differential diagnosis. These patients are characterized by brief, tran- sient

is an important differential diagnosis. These patients are characterized by brief, tran- sient episodes of psychosis and perceptual dis- turbance, typically in response to stress, emotional lability disproportionate to precipitants, cognitive deficits as indicated by multiple deficits in information processing, no clear thought disorder, and high comorbidity with ADHD. This group of patients is not adequately characterized by existing DSM-IV categories (Kumra et al. 1998; McKenna et al. 1994;

not adequately characterized by existing DSM-IV categories (Kumra et al. 1998; McKenna et al. 1994; Towbin et al. 1993), and in DSM, these patients would be considered as psychosis NOS.  The psychosis of childhood-onset schizophre- nia can usually be distinguished by its severe and pervasive nature and its non-episodic, unremitting course (Nicolson and Rapoport 1999). Addition- ally, these children show poorer premorbid func- tioning in social, motor, and language domains, learning

these children show poorer premorbid func- tioning in social, motor, and language domains, learning disabilities, and disruptive behavior disorders (Alaghband-Rad et al. 1995; Green et al. 1992; Hollis 1995), and although not reported in studies of the premorbid history of adult-onset schizophrenia (Done et al. 1994; Jones et al. 1994), transient autistic symptoms such as hand flapping and echolalia occur in toddler years for a substantial minority of the children (Alaghband- Rad et al. 1995;

occur in toddler years for a substantial minority of the children (Alaghband- Rad et al. 1995; Russell et al. 1989), probably reflecting compromised early brain development.  #### Treatment Although rare, childhood-onset schizophrenia is a devastating disorder, which is frequently resistant to treatment, and unfortunately, there is a narrow evidence base to guide treatment, particularly as there are no trials comparing atypical antipsy- chotics, which have become the mainstay of cur- rent

are no trials comparing atypical antipsy- chotics, which have become the mainstay of cur- rent treatment. Two prior randomized controlled trials established the superiority of typical anti- psychotics over placebo in COS (Pool et al. 1976; Spencer and Campbell 1994), but only one trial had compared the efficacy and safety of two anti- psychotics, demonstrating the therapeutic superi- ority of clozapine over the typical antipsychotic haloperidol (Kumra et al. 1996). As a result of our prior study

over the typical antipsychotic haloperidol (Kumra et al. 1996). As a result of our prior study and studies in AOS patients (Davis et al. 2003; Moncrieff 2003), clozapine has established itself as the de facto gold standard in studies establishing antipsychotic efficacy – par- ticularly in a pediatric population. Our recent double-blind randomized con- trolled trial of comparing clozapine (n = 12) with olanzapine (n = 13) showed that clozapine was associated with a significant reduction in all

with olanzapine (n = 13) showed that clozapine was associated with a significant reduction in all outcome measures, whereas olanzapine showed significant improvement only in measures of neg- ative symptoms and in the BPRS. A direct com- parison of treatment efficacy showed a significant advantage for clozapine in the alleviation of neg- ative symptoms of schizophrenia (producing a 4% greater reduction in SANS, p = 0.04, effect size 0.89), which was not correlated with improve- ment in mood or

in SANS, p = 0.04, effect size 0.89), which was not correlated with improve- ment in mood or extrapyramidal side effects. Clo- zapine was, however, also associated with more overall side effects, including enuresis, tachycar- dia, and hypertension. By 2-year follow-up, 15 patients were on clozapine, and there was evidence of sustained clinical improvement, but additional side effects emerged including lipid anomalies (N = 3) and seizures (N = 1). Both treatments were associated with marked

including lipid anomalies (N = 3) and seizures (N = 1). Both treatments were associated with marked weight gain. This study suggests that clozapine should be the drug of choice in treatment-resistant childhood-onset schizophrenia (Shaw et al. 2006).  #### Adverse Effects of Clozapine Clozapine, which is a lifeline for many of the COS children, is associated with several side effects. The NIMH study has started addressing the ques- tion of how to manage these side effects so that these children

has started addressing the ques- tion of how to manage these side effects so that these children can continue to stay on clozapine.  ##### Neutropenia and Akathisia Children and adolescents treated with clozapine have increased susceptibility to neutropenia. This can be successfully managed by addition of lith- ium (Sporn et al. 2003). Similarly, akathisia seen only rarely in adults on clozapine appears more common in children (6 out of 15 children recently treated with clozapine had developed

appears more common in children (6 out of 15 children recently treated with clozapine had developed akathisia) and can frequently manifest as worsening of psy- chotic symptoms or agitation in children, which frequently results in dosage increment. This side effect is responsive to adjunctive propranolol (Gogtay et al. 2002) treatment.  ##### Weight Gain Weight gain is a significant effect of atypical anti- psychotics and is more pronounced in children and adolescents than in adults (Ratzoni et

anti- psychotics and is more pronounced in children and adolescents than in adults (Ratzoni et al. 2002). Genetic risk for weight gain on atypical antipsy- chotics has been suggested (polymorphism in beta3 and alpha 1A adrenergic, 5-HT2C and hista- mine receptors, and TNF-alpha) (Basile et al. 2001), and a number of biochemical correlates or predictors of weight gain have been reported in the literature (leptin, prolactin, triglyceride, and HDL levels).  In our recent analysis of 23 patients

(leptin, prolactin, triglyceride, and HDL levels).  In our recent analysis of 23 patients treated with clozapine who had at least one medication- free week, plasma levels of hormones putatively involved in weight and appetite regulation (leptin, insulin, ghrelin, adiponectin, amylin, TNF-alpha) were compared with age, sex, and BMI-matched healthy controls. After 6 weeks on clozapine, COS children showed increases in BMI (p = 0.001) and leptin (p = 0.01). For COS patients, BMI at baseline and

showed increases in BMI (p = 0.001) and leptin (p = 0.01). For COS patients, BMI at baseline and week 6 correlated with insu- lin level (r = 0.5, p = 0.004). In addition, increase in BMI was positively correlated with clinical improvement in CGI, SAPS, and SANS rating scales (p < 0.05). Our findings suggest that clozapine-induced weight gain may be associated with increased leptin, reduced adiponectin and ghrelin, and clinical improvement (Sporn et al. 2005a).  ### Childhood-Onset Pervasive

and ghrelin, and clinical improvement (Sporn et al. 2005a).  ### Childhood-Onset Pervasive Developmental Disorder  #### Synonyms *   Pervasive developmental disorder not otherwise specified; Pervasive developmental disorders  #### Definition The term childhood-onset pervasive developmen- tal disorder (COPDD) was originally used in the DSM-III. The essential features of COPDD are profound disturbance in social relations and mul- tiple oddities of behavior all developing after 30 months of age and

in social relations and mul- tiple oddities of behavior all developing after 30 months of age and before 12 years (American Psychiatric Association [APA] 1980). This cate- gory was intended to capture the children who presented with features of pervasive developmen- tal disorders but developed the disorder after 30 months of age. In the DSM-III-Revised, the category was removed and the category pervasive developmental disorder not otherwise specified (PDDNOS) was added. PDDNOS now refers to

pervasive developmental disorder not otherwise specified (PDDNOS) was added. PDDNOS now refers to those children who do not meet the criteria for a specific pervasive developmental disorder but demonstrate features.  ### Children with Autism in Foster Care  #### Definition Foster care is a system in which children, youth, and young adults are temporarily placed outside of their birth family’s home. The state maintains oversight of this child-focused system through the involvement of the courts

The state maintains oversight of this child-focused system through the involvement of the courts and child protection service agencies. Increasingly, most states have recognized that group care, in which young peo- ple are placed in group homes or in a residential setting, is not the best option for youth in need of out-of-home care. As such, other options, such as family care or kinship care and foster parenting, have undergone extensive and robust develop- ment and have been fairly widely

and foster parenting, have undergone extensive and robust develop- ment and have been fairly widely utilized in var- ious states. The general types of foster care include family/kinship care were the youth is placed with someone related by biology or mar- riage, placement in emergency shelters, tradi- tional county-level foster care (placement with a certified foster parent in their home), therapeutic foster care (placement with certified foster parents in their home with therapeutic and skill

foster care (placement with certified foster parents in their home with therapeutic and skill develop- ment activities built in), group homes which are within a community setting, and residential place- ments which offer the highest level of structure and are typically located in a more secure campus- like setting. Residential-based services sometimes include diagnostic settings to help assess treat- ment options and the development of a youth’s individualized program (VanBergeijk and McGowan

ment options and the development of a youth’s individualized program (VanBergeijk and McGowan 2001).  The reasons for removal from the family home can include various types of abuse and neglect which frequently may, but do not always, result in the termination of parental rights. In these cases, guardianship may shift to a relative or to the local department of social ser- vices. The type of foster care placement is often impacted by the availability of appropriate place- ments and is

of foster care placement is often impacted by the availability of appropriate place- ments and is determined by the needs of the spe- cific youth. The primary purpose of foster placement is to provide safety for the youth removed from their family’s home. Once in the foster care system, safety, well-being, and perma- nency are the primary goals typically.  #### Historical Background In 1853, Charles Loring Brace founded the Chil- dren’s Aid Society (CAS) in New York City. The purpose of the CAS

Loring Brace founded the Chil- dren’s Aid Society (CAS) in New York City. The purpose of the CAS was to provide education and housing for homeless youth due to his personal concern over the number of youth who engaged in begging and stealing due to the lack of appropriate living conditions (Ramsey 2007). The Depart- ment of Health and Human Services held the first White House conference on the Care of Dependent Children in 1909. Prior to this confer- ence came the creation of the Children’s

Care of Dependent Children in 1909. Prior to this confer- ence came the creation of the Children’s Bureau to oversee the practices “pertaining to the welfare of children and child life among all classes of our people.” The establishment of the Children’s Bureau led to the standardization of practices governing foster care. In 1974, the Child Abuse Prevention and Treatment Act (CAPTA) of 1974, P.L. 93–247, was passed. The purpose of this law was “to provide financial assistance for a demon-

P.L. 93–247, was passed. The purpose of this law was “to provide financial assistance for a demon- stration program for the prevention, identification, and treatment of child abuse and neglect.” Subse- quently, it was revised in 1978 to help promote healthy development and free individuals for adoption. Since the initial passing of P.L. 93–247, much additional legislation has been passed in the United States dealing with child protection, including the reauthorizing and amending of CAPTA several

States dealing with child protection, including the reauthorizing and amending of CAPTA several times, most recently in 2010, and the Preventing Sex Trafficking and Strengthening Families ACT, P.L. 113–183 in 2014. For a full historical account of relevant legislation, see https://cb100.acf.hhs.gov/ childrens-bureau-timeline.  #### Foster Care and Autism Every decade, a federally mandated study is conducted on abuse and neglect to identify the incidence, both reported and unreported, of abuse

is conducted on abuse and neglect to identify the incidence, both reported and unreported, of abuse and neglect of children. The fourth such study, conducted in 2010, covering years 2005–2006 indicated that almost 3 million chil- dren (1 in 25) were endangered, with 1.25 million of those experiencing within this time period http://www.acf.hhs.gov/sites/default/files/ opre/ nis4_report_exec_summ_pdf_jan2010.pdf). Of that number, 29% experienced abuse as opposed to the remainder who experienced

Of that number, 29% experienced abuse as opposed to the remainder who experienced neglect. Of those neglected, approximately 72% were either educationally or emotionally neglected. According to the Department of Health and Human Services, there has been a decreasing trend in the number of youth in foster care leading up to 2005, when the number of youth placed out of home was approximately 511,000. Between 2017 and 2018, there was a decrease of approxi- mately 3,388 youth

approximately 511,000. Between 2017 and 2018, there was a decrease of approxi- mately 3,388 youth (http://www.acf.hhs.gov/ sites/default/files/cb/afcarsreport26.pdf . In 2018, the number of youth estimated to be in out-of- home foster care was 437,283. The estimated number of youth with intellec- tual and developmental disabilities (IDD) in foster care nationally ranges from 28% to more than 50% (Lightfoot et al. 2011; Ringeisen et al. 2008). With over 30% of the children currently in foster

(Lightfoot et al. 2011; Ringeisen et al. 2008). With over 30% of the children currently in foster care aged 3 years or younger, identifica- tion of developmental delays and early interven- tion services is critical to the well-being of children within the foster care system (US Department of Health and Human Services 2019). Although children raised in residential fos- ter care display fewer social deficits and ASD symptoms than children raised in institutional set- tings (Levin et al. 2015),

deficits and ASD symptoms than children raised in institutional set- tings (Levin et al. 2015), young children enter the child welfare system with significant develop- mental needs that often are not properly addressed (Casanueva et al. 2008). Systematic screening of all children in the foster care system performed by caregivers can increase the identification of devel- opmental disabilities, including autism among foster care youth (Jee et al. 2010). Screening by developmental pediatricians and

autism among foster care youth (Jee et al. 2010). Screening by developmental pediatricians and other medical professionals who work with youth in foster care is also critical to identification of autism and improving opportunities for appropriate treatment.  Even when autism is identified, youth with autism spectrum disorders (ASD) are at a much greater risk for poor outcomes and greater lengths of stay in the foster care system (Bilaver and Havlicek 2013). One important contributor to poor

of stay in the foster care system (Bilaver and Havlicek 2013). One important contributor to poor outcomes is that individuals in foster care have increased exposure to adverse childhood experiences (ACEs) such as being abused, repeat- edly witnessing violence against others, or other forms of trauma. Berg et al. (2016) found that having autism in childhood can in itself be signif- icantly associated with a high number of ACEs. To add to this fact, the impact of foster care plus ASD places these

with a high number of ACEs. To add to this fact, the impact of foster care plus ASD places these youth at a much higher risk for exposure to ACEs. Youth with autism may be at an even greater risk, for example, for physical abuse, a prominent ACE, as compared to peers with other disabilities and peers without disabil- ities. The findings of Berg et al. (2016) are con- sistent with the findings for other children with communication difficulties (Sullivan and Knutson 1998). According to the Centers

other children with communication difficulties (Sullivan and Knutson 1998). According to the Centers for Disease Con- trol and Prevention (CDC; Felitti et al. 1998), these experiences are major risk factors for illness, death, social problems such as challenging behav- ior (e.g., aggression, self-injury), and disability. Similarly, scientists at the Center for the Develop- ing Brain found that ACEs and their associated risk factors have serious implications for disrup- tions in brain

that ACEs and their associated risk factors have serious implications for disrup- tions in brain development, particularly when experienced early in life. These disruptions to development may lead to difficulties with emo- tional regulation and attention difficulties, among other challenges (Center on the Developing Child 2012). The combined risk factors of ASD and ACEs can make the outcomes for these youth quite poor, particularly if they do not receive appropriate assessment or care (Kerns et

youth quite poor, particularly if they do not receive appropriate assessment or care (Kerns et al. 2015; Simms et al. 2000).  Of additional concern for individuals with ASD is the likelihood that these youth may be placed into foster care place- ment not due to abuse and neglect but rather due to inability of the biological parent(s) to provide adequate support and care given the significant challenges that parents of youth with ASD face (e.g., challenging behavior) (Estes et al. 2009). Other

that parents of youth with ASD face (e.g., challenging behavior) (Estes et al. 2009). Other risk factors attributed to the concomitant impact of both ASD and foster care placement are the number of transitions between homes and providers due to externalizing behaviors (e.g., aggression), which are significant risk factors for placement disruptions. These behaviors may occur at an even higher rate than typical for per- sons with autism as a result of experiencing fre- quent transitions in living

than typical for per- sons with autism as a result of experiencing fre- quent transitions in living arrangements due to the difficulty many individuals with ASD have with transitions (Barber et al. 2001). Individuals in foster care often transition between home, com- munity, and residential care settings with some frequency. In fact, data from 2010 revealed that 14.9% of children experienced at least three out-of- home placements in less than a year (Children’s Bureau, Administration for

at least three out-of- home placements in less than a year (Children’s Bureau, Administration for Children and Families, US Department of Health and Human Services 2012).  An additional concerning factor affecting fos- ter placement stability for individuals with autism may be the lack of expression of emotion and difficulties with communication between the fos- ter child and foster parent/caregivers (Bernedo et al. 2015). Foster parents typically are motivated to provide care because they

(Bernedo et al. 2015). Foster parents typically are motivated to provide care because they believe they are making a difference. When a child can express themselves through words and can show displays of affection toward the foster parent, often the relationship blossoms, and the mutual commit- ment strengthens. Given communication and expression of emotions are common concerns for individuals with ASD, foster parents may frus- trate more easily and may not experience the same level of

with ASD, foster parents may frus- trate more easily and may not experience the same level of gratification as with “typical youth.” For this, and other reasons (e.g., challenging behav- ior), foster parents may choose to disrupt the placement more often than with individuals with autism. Finally, placement disruptions, which are highly problematic for all children in care, may be exacerbated by issues affecting individuals with autism. Specifically, issues with change, need for consistency, and

affecting individuals with autism. Specifically, issues with change, need for consistency, and the need for sameness/routine can have a significant effect on an individual both emotionally and behaviorally in all settings but particularly when the stability of placement is so tenuous. For example, placement disruptions can impact an individual’s academic performance, with a loss of 4 months of instruction for every move (Mehana and Reynolds 2004). Coupling this with the difficulty individuals with

for every move (Mehana and Reynolds 2004). Coupling this with the difficulty individuals with ASD often have with changes in their environment, there is likely to be a significantly greater impact on their functioning.  #### Future Directions One way to mitigate the impact of these traumatic experiences for individuals with ASD is to pro- vide permanency (i.e., stable foster placement, adoptive placement, or return to biological family with necessary supports). Given the particular difficulties

or return to biological family with necessary supports). Given the particular difficulties with transitions that youth with ASD experience, finding a stable placement may be especially important; however, according to Cooley et al. (2015), challenging behaviors, such as those displayed by individuals with ASD, can lower foster parents’ satisfaction and motivation to continue to provide care, leading to changes in placement. Adding to this, the particular difficulty of youth with autism to

leading to changes in placement. Adding to this, the particular difficulty of youth with autism to communicate their needs and to display affection to a foster parent, success- ful placement and stability may be elusive for many individuals with ASD.  Targeted resources and programming must be built into the significantly overtaxed foster care system to both prevent the need for foster care placement and ensure the successful placement and, whenever possible, reunification with the

care placement and ensure the successful placement and, whenever possible, reunification with the child/youth/young adult’s birth family. First, it is critical to teach Departments of Social Services (DSS) case workers who first come into contact with families in need to recognize the signs and needs associated with a diagnosis of ASD and ACEs. This is important to identify in both parents and the youth.  Undiagnosed developmental con- cerns in a parent can lead to challenges in raising a child,

youth.  Undiagnosed developmental con- cerns in a parent can lead to challenges in raising a child, particularly one who also has a develop- mental disability, such as ASD. Furthermore, research suggests that children of mothers who have experienced a high level of ACEs (>3) were 2.2 times more likely to have developmental delay (Folger et al. 2018). Understanding the needs of the birth parents is critical in promoting support for reunification and obtaining the appro- priate services for the

is critical in promoting support for reunification and obtaining the appro- priate services for the family. Additionally, iden- tification of ASD symptoms in the youth may be critical in ensuring the right services are obtained when removing the youth from their home.  Other services that may be critical include access to quality medical care and diagnostics (e.g., to accurately diagnose ASD and/or co-occurring mental health concerns); parent training for both birth parents and foster parents

co-occurring mental health concerns); parent training for both birth parents and foster parents (e.g., Bearss et al. 2015); linkages with early intervention resources, educational resources, and/or vocational resources; and placement in a highly trained therapeutic foster care home when appropriate. Access to evidence-based clinical tools to assess trauma and ACEs in people with ASD do not yet exist (Fuld 2018; Berg et al. 2016). However, using assessment scales to eval- uate ACEs like those

exist (Fuld 2018; Berg et al. 2016). However, using assessment scales to eval- uate ACEs like those used by Berg et al. (2016) could be useful in evaluating trauma and guiding treatment.  Access to evidence-based treatments for indi- viduals with ASD in foster care are unfortunately often minimal or nonexistent, including access to applied behavior analysis (ABA) services. Addi- tionally, evidence-based treatments for trauma in children, youth, and young adults such as cogni- tive behavior

treatments for trauma in children, youth, and young adults such as cogni- tive behavior therapies (e.g., TF-CBT, DBT) must be evaluated for use with individuals with ASD to mitigate the effects of exposure to adverse child- hood events.  ### Children’s Communication Checklist (CCC-2)  #### Synonyms *   CCC-2; Children’s communication checklist, version 2  #### Description The Children’s Communication Checklist (CCC-2) is a checklist that is used to assess aspects of everyday communication that

Checklist (CCC-2) is a checklist that is used to assess aspects of everyday communication that are diffi- cult to evaluate using traditional language tests. It consists of 70 items divided into 10 subscales and is usually completed by a parent or other caregiver, though useful information can be pro- vided by teachers or other professionals who know the child well. It takes between 5 and 15 min to complete. The ten scales are: *   A. Speech *   B. Syntax *   C. Semantics *   D. Coherence *   E.

complete. The ten scales are: *   A. Speech *   B. Syntax *   C. Semantics *   D. Coherence *   E. Inappropriate initiation (initiation in US version) *   F. Stereotyped language (scripted language in US version) *   G. Use of context *   H. Nonverbal communication *   I. Social relations *   J. Interests The first four scales, A to D, assess aspects of language structure, vocabulary, and discourse. These are all areas that are often impaired in non-autistic as well as autistic children with

These are all areas that are often impaired in non-autistic as well as autistic children with lan- guage impairments. The next four scales, E to H, cover aspects of communication that are not easy to assess using conventional language assessments but which are often impaired in children with autistic spectrum disorders. The last two scales, I and J, assess behaviors that are usually impaired in cases of autistic spec- trum disorder. For each scale, there are seven items, five describing

in cases of autistic spec- trum disorder. For each scale, there are seven items, five describing difficulties and two describing strengths. The first 50 items focus on children’s difficulties, with items from different scales inter- leaved, and the last 20 items describe children’s strengths. For each item, the respondent com- pletes a rating reflecting the frequency with which a behavior is observed. *   Less than once a week (or never) *   At least once a week, but not every day *   Once or twice

*   Less than once a week (or never) *   At least once a week, but not every day *   Once or twice a day *   Several times (more than twice) a day (or always)  #### Uses of the CCC-2 1.  To give a quantitative estimate of pragmatic language impairments in children. 2.  To screen children for risk of language impair- ment. Those identified as at risk can then be referred for more detailed language assessment. 3.  To help identify children who may merit fur- ther assessment for an autistic

assessment. 3.  To help identify children who may merit fur- ther assessment for an autistic spectrum disor- der. It is important to stress that CCC-2 cannot be used to diagnose autistic disorder; however, a finding of low scores on scales E to H, plus evidence of impairment on scales I and J, indi- cates that a more detailed diagnostic evaluation for autism is merited.  #### Application and Availability Norms are available for both UK and US stan- dardization samples over the age range 4–16

Norms are available for both UK and US stan- dardization samples over the age range 4–16 years. Both UK and US versions are published by Pearson Publishing. An electronic scorer comes with the checklist and is recommended as manual scoring is complex. Some of the items in the CCC-2 are not suitable for describing adult communication. A modifica- tion of the CCC-2, the CC-A, was therefore devel- oped and normed for adults in 2009.  In addition, a self-report version, CC-SR, suit- able for

oped and normed for adults in 2009.  In addition, a self-report version, CC-SR, suit- able for literate teenagers and adults was devel- oped in 2009, with UK norms.  #### Historical Background ##### Checklist for Language-Impaired Children (CLIC and CLIC-2) CCC-2’s origins were in CLIC, a research instru- ment that was devised as a means of identifying from within a language-impaired sample those children with a clinical picture of “semantic- pragmatic disorder.” This subgroup had been

those children with a clinical picture of “semantic- pragmatic disorder.” This subgroup had been described clinically, and included children who spoke in long and fluent sentences but whose use of language was strange. Utterances may be tan- gential, off-topic, or long and rambling. The original CLIC had 20 multiple-choice items, with the respondent selecting which of five descriptions best described the child. CLIC was piloted with teachers and therapists but was found to be unsatisfactory

the child. CLIC was piloted with teachers and therapists but was found to be unsatisfactory because respondents often felt none of the provided options described the child. Accordingly, the format was revised to create CLIC-2 in which each item described a single communicative behavior which was rated as “applies definitely,” “applies somewhat,” or “does not apply.”  A large-scale reliability study with CLIC-2 was conducted at special schools for language- impaired children using ratings by

study with CLIC-2 was conducted at special schools for language- impaired children using ratings by teachers and therapists. This too was not entirely satisfactory, with inter-rater reliability being low for some items.  ##### The Children’s Communication Checklist: Original Version The original Children’s Communication Checklist was developed from CLIC-2 by selecting those items with highest inter-rater reliability and grouping these into new scales on the basis of statistical criterion of

inter-rater reliability and grouping these into new scales on the basis of statistical criterion of internal consistency. This gave a checklist with nine scales: A, speech; B, syntax; C, inappropriate initiation; D, cohesion; E, stereotyped conversation; F, use of context; G, rapport; H, interests; and I, social interaction.  A validation study was conducted with the CCC using a subset of children who had partici- pated in a national study of language-impaired 7-year-olds. Their teachers and

who had partici- pated in a national study of language-impaired 7-year-olds. Their teachers and therapists com- pleted CCCs independently for the same children, making it possible to assess inter-rater agreement. Inter-rater reliability varied from scale to scale but was good for a pragmatic composite and reason- able for other scales. The distribution of CCC ratings also differentiated children who were cat- egorized on clinical grounds into cases of definite, possible, or no semantic-pragmatic

were cat- egorized on clinical grounds into cases of definite, possible, or no semantic-pragmatic disorder.  Up to this point, the CCC was used only to subclassify children already known to have a communication impairment. However, there was growing interest in its potential in a broader con- text, both as a screening tool for language and communication problems and as a means of iden- tifying pragmatic difficulties in children with psy- chiatric impairments. In addition, there seemed to be

pragmatic difficulties in children with psy- chiatric impairments. In addition, there seemed to be potential to extend data on the CCC to a broader age range and to explore whether it would yield valid data with parents as respondents.  To consider these questions, a further study with the CCC was carried out in collaboration with Dr. Gillian Baird, a developmental pediatri- cian at a tertiary referral center in London, with results being published in 2001. CCC data were gathered from a sample

center in London, with results being published in 2001. CCC data were gathered from a sample of children aged 5–16 years who were referred to the center for diagnostic assessment. Two copies of the CCC were sent to parents with their letter of appoint- ment, and they were asked to have the child’s teacher or therapist complete one copy and to complete the other themselves. In addition, CCC data were collected from 31 typically developing children. Agreement between parent and teacher ratings

were collected from 31 typically developing children. Agreement between parent and teacher ratings was only modest (r = 0.45), but both sets of ratings showed association with the child’s clinical diagnosis, with the parent ratings giving particularly strong association. Scores for the typ- ically developing children showed little overlap with those from the clinical sample, suggesting that the CCC might be useful as a means of screening for communication problems in general as well as of

the CCC might be useful as a means of screening for communication problems in general as well as of identifying pragmatic difficulties. In addition, this study indicated that children with a diagnosis of autism obtained very low scores on the CCC overall.  ##### Development of CCC-2 When CCC had been in use for a few years, it was decided to develop a new version of the checklist for standardization in the UK. One major change between CCC and CCC-2 was in the response format. It was decided that

in the UK. One major change between CCC and CCC-2 was in the response format. It was decided that a more concrete rating of frequency of observing a behavior would be less subjective and easier to use than the original response options. The CCC-2 also had the same number of items for all of the scales and gave more emphasis to items assessing non-pragmatic aspects of communication such as speech and syntax. Tables are provided to transform raw scores on each scale to age-scaled scores with mean

syntax. Tables are provided to transform raw scores on each scale to age-scaled scores with mean 10 and SD 3. CCC-2 also provided norms for two composite scores. The first, the General Communication Composite, is based on all the communication scales (A to H). This is effective in discriminating children with any clinical diag- nosis from typically developing children. The second index, the Social Interaction Deviance Composite, is an index of mismatch between structural and pragmatic/social

Interaction Deviance Composite, is an index of mismatch between structural and pragmatic/social skills. This was derived to give optimal discrimination between children with typical SLI and those with evidence of pragmatic difficulties. A low SIDC is seen when a child has intact structural language skills but major pragmatic difficulties. This kind of pro- file was characteristic of children with a diagnosis of Asperger syndrome.  ##### CCC-2, US version A US version of CCC-2 was subsequently

a diagnosis of Asperger syndrome.  ##### CCC-2, US version A US version of CCC-2 was subsequently stan- dardized and was published in 2006. Changes to the checklist itself were minor and just involved alteration of wording to make it more suitable for the US context. The scoring, however, was altered so that the General Communication Composite was scaled with a mean of 100 and SD of 15. It is not therefore comparable to the UK version, which is based on the sum of eight subscales, with expected

therefore comparable to the UK version, which is based on the sum of eight subscales, with expected mean of 80. In addition, some changes were made to the names of scales. The SIDC was renamed the Social Interaction Differ- ence Score (SIDI).  #### Psychometric Data The UK version of CCC-2 was standardized on a sample of 542 children aged 4–16 years, which was broadly representative of the socioeconomic distribution of the general population and covered a wide geographic range (though not all

distribution of the general population and covered a wide geographic range (though not all regions were represented). Before deriving norms, responses were inspected to find cases where the pattern of responses suggested poor comprehen- sion of instructions; rules were specified to iden- tify these, and they were excluded. Floor effects were obtained on all scales, especially at the older ages (i.e., many children had no evidence of impairment). Norms were derived for each scale from a regression

many children had no evidence of impairment). Norms were derived for each scale from a regression equation that predicted total log score from log age in months. These scores were scaled to mean of 10 and SD 3. Because of the non-normality of the data, the scaled scores have a ceiling, which means that CCC-2 is not well suited for assessing variations among children who have above-average communication skills.  The test manual reports internal consistency and inter-rater agreement for all

skills.  The test manual reports internal consistency and inter-rater agreement for all scales. Coeffi- cient alpha (internal consistency) was 0.65 or more for all scales. Inter-rater reliability between a parent and a professional (teacher or speech- language therapist) was not impressive for indi- vidual subscales. The inter-rater reliability for the General Communication Composite (GCC) was 0.396, and for the Social Interaction Deviance Composite, it was 0.790. Disagreement between parent and

and for the Social Interaction Deviance Composite, it was 0.790. Disagreement between parent and professional ratings generally took the form of professionals rating a lower level of impairment.  Validity was assessed using a sample of children with diagnoses of specific language impairment (SLI), pragmatic language impair- ment (PLI), and high-functioning autism (HFA) or Asperger syndrome as well as twenty typi- cally developing (TD) children. There were striking differences between the

as well as twenty typi- cally developing (TD) children. There were striking differences between the clinical groups and the TD group on all ten subscales. On the GCC, there was little overlap between the dis- tribution of scores of the clinical groups and the TD group. However, the GCC did not differen- tiate well between the different types of disor- der. Rather, it acted as a general indicator that the child had communication difficulties. The groups were better differentiated by the Social

that the child had communication difficulties. The groups were better differentiated by the Social Interaction Deviance Composite (SIDC), which was formed by subtracting scores on pragmatic/ social scales from those on the structural lan- guage scales. This showed a progressive increase in abnormality going from the SLI group through the PLI and HFA groups, with the Asperger syndrome group obtaining the lowest scores. Nevertheless, there were no sharp boundaries between the groups, but rather a

the lowest scores. Nevertheless, there were no sharp boundaries between the groups, but rather a gradual progression.  ##### Australian Sample Normative data were also collected for 115 Aus- tralian schoolchildren aged 6, 9, or 12 years from the Perth Metropolitan Region. In general, scale means for these children fell around one point below the expected mean of 10. It was recommended therefore that different cutoffs should be used for Australian children.  ##### CCC-2, US Edition US norms were

different cutoffs should be used for Australian children.  ##### CCC-2, US Edition US norms were gathered for the CCC-2 US edi- tion on a sample of 950 children aged 4–16 years. This sample was well matched to US population demographics in terms of race/ethnicity, geo- graphic region, and parental educational level. Norms were developed by a process of inferential norming.  Test-retest reliability was obtained by having a subset of respondents complete the CCC-2 on two occasions within a period

was obtained by having a subset of respondents complete the CCC-2 on two occasions within a period of 1–28 days. Values were generally high, above .85, for different age ranges. Internal consistency was somewhat higher than that found for the UK sample. Inter-rater reliability was not assessed.  Validity was assessed by considering scores from children from clinical samples including those with SLI, pragmatic language impairment, and autism spectrum disorder (ASD). The criteria for diagnosing

SLI, pragmatic language impairment, and autism spectrum disorder (ASD). The criteria for diagnosing pragmatic language impairment are not provided. As with the UK sample, all three clinical groups showed impairments on all ten subscales. SIDI scores of ≥ 11 or less were seen in 6% of children with SLI, none of those with PLI, and 27% of those with ASD.  Data on sensitivity and specificity are pre- sented for different cutoffs on the GCC. In gen- eral, as with the UK version, the GCC has good

sented for different cutoffs on the GCC. In gen- eral, as with the UK version, the GCC has good sensitivity and specificity for distinguishing clin- ical cases from typically developing children, but it is not useful for distinguishing between clinical groups.  #### Clinical Uses CCC-2 is a useful screening instrument for com- munication disorders. The General Communica- tion Composite (GCC) is useful for identifying that a child has communication difficulties and few affected children obtain a

for identifying that a child has communication difficulties and few affected children obtain a GCC above the 10th percentile. The GCC is not, however, useful for distinguishing between different subtypes of disorder.  The SIDC is useful for identifying children who have an uneven communicative profile, with disproportionate impairment in pragmatic aspects of communication relative to structural language skills. This composite has good reliabil- ity and is sensitive to autistic spectrum disorders.

skills. This composite has good reliabil- ity and is sensitive to autistic spectrum disorders. It is recommended, however, that it should only be interpreted for a child whose GCC is below the 10th percentile.  The CCC-2 is not a diagnostic instrument for autistic spectrum disorder (ASD). It can however be useful in screening for ASD. It is recommended that children who obtain low scores on the GCC, including poor performance on the pragmatic scales, should be referred for full assessment for

GCC, including poor performance on the pragmatic scales, should be referred for full assessment for ASD.  The profile of scores on different subscales is too unreliable to be used diagnostically but can nevertheless provide a useful starting point for a discussion with a caregiver about a child’s difficulties.  In research contexts, CCC-2 can be useful for quantifying the extent of communication impair- ment in different domains. Deficits measured by the CCC-2 have been shown to be highly herita-

ment in different domains. Deficits measured by the CCC-2 have been shown to be highly herita- ble. The CCC-2 has been shown to be sensitive to the broader autism phenotype in siblings of chil- dren with ASD. CCC-2 has also been used with children with genetic conditions such as Williams syndrome, Down syndrome, and sex chromosome trisomies, where it can be helpful in highlighting different communicative deficits. Children’s Communication Checklist, Version 2 ▶Children’s Communication Checklist

deficits. Children’s Communication Checklist, Version 2 ▶Children’s Communication Checklist (CCC-2)  Children’s Global Assessment Scale Benedetto Vitiello Child and Adolescent Treatment and Preventive Intervention Research Branch, NIMH, NIH, Bethesda, MD, USA  Synonyms Developmental Disabilities – Children’s Global Assessment Scale (DD-CGAS)  Description The Children’s Global Assessment Scale (CGAS) is a clinician-rated instrument that provides a sin- gle score for the overall level of

(CGAS) is a clinician-rated instrument that provides a sin- gle score for the overall level of behavioral and emotional functioning of a child aged 4–16 years. The CGAS is completed by a clinician based on information acquired from direct examination and/or derived from informants such as parents, educators, or case managers. Raters score the child’s most impaired level of functioning for the period of interest (usually the past month) on a scale ranging on a continuum from 100 (corresponding

of interest (usually the past month) on a scale ranging on a continuum from 100 (corresponding to excellent functioning in all areas of life) to 1 (representing very poor function- ing with need for constant supervision). Anchoring descriptors are provided for each decile of the CGAS. While a score of 100–91 indicates superior functioning and 90–81 good functioning, 80–71 applies to children with no more than slight impair- ment in functioning at home, at school, or with peers. A score of 70 or

no more than slight impair- ment in functioning at home, at school, or with peers. A score of 70 or below is usually considered the threshold for the presence of definite, although slight, functional impairment. Most children referred for clinical evaluation and treatment have scores of 60 or below.  The CGAS has been further modified to meet the need of scoring global functioning of children with autism age 4 and older. This scale is called the Developmental Disabilities – CGAS (or DD-CGAS). The

age 4 and older. This scale is called the Developmental Disabilities – CGAS (or DD-CGAS). The information used for scoring the DD-CGAS relates to four main domain of functioning: self-care, communication, social behavior, and school/academic performance. In each of these domains, the level of impairment can range from none to extreme. The reference for determining the level of impairment is the level of functioning that would be expected by a typically developing child of the same chronological

of functioning that would be expected by a typically developing child of the same chronological age. Impairment in the main domains of functioning is then used by the rating clinician to formulate a final overall score of functioning (the DD-CGAS score) on a scale ranging from 100 (corresponding to superior functioning) to 1 (indicating extreme impairment). Also the DD-CGAS provides descriptors for each decile (i.e., 100–91: superior functioning within family, school, and peers; 90–81: adequate

each decile (i.e., 100–91: superior functioning within family, school, and peers; 90–81: adequate functioning in all areas; 80–71: most daily living activities at age level but with slight impairment in at least one; 70–61: most daily living activities at age level but with moderate impairment in at least one domain; 60–51: moder- ate impairment in functioning in most domains; 50–41: moderate impairment in functioning in most domains and severe impairment in at least one domain; 40–31: severe

in functioning in most domains and severe impairment in at least one domain; 40–31: severe impairment in function- ing in some domains; 30–21: severe impairment in all domains and settings; 20–11: extreme impairment in at least one domain; 10–1: extreme and pervasive impairment with danger to self or others and need for intensive constant supervision). The time frame for the rating can vary but typically is in the order of several weeks or months.  Historical Background The CGAS was introduced

is in the order of several weeks or months.  Historical Background The CGAS was introduced by Shaffer et al. (1983) and is a modification of the Global Assess- ment Scale developed by Endicott and colleagues in 1976, which, in turn, was a revision of the Health-Sickness Rating Scale, originally published by Luborsky in 1962. A similar scale is the Global Assessment of Functioning (GAF), which constitutes the axis Vof the DSM-IV multi- axial evaluation. The DD-CGAS is a modification by Wagner et

the axis Vof the DSM-IV multi- axial evaluation. The DD-CGAS is a modification by Wagner et al. (2007) of the CGAS specifically to score the global level of functioning of children autism and other pervasive developmental disor- ders. Both the CGAS and DD-CGAS have been translated in languages other than English and are used internationally.  Psychometric Data When used by raters trained in the clinical evalu- ation of children with mental illness, the CGAS was shown to have excellent inter-rater

evalu- ation of children with mental illness, the CGAS was shown to have excellent inter-rater reliability (e.g., intraclass correlation coefficient around 0.84), good test-retest stability, and acceptable discriminant and concurrent validity. The CGAS can detect treatment effects. For example, it was able to discriminate between active antidepressant treatment and placebo in adolescent depression. The DD-CGAS too was found to have very good inter-rater and test-retest reliability when used by

The DD-CGAS too was found to have very good inter-rater and test-retest reliability when used by clinicians who were experts in autism and other pervasive developmental disorders and who had been trained in its use. DD-CGAS scores showed moderate correlation with indices of adaptive behavior, intellectual functioning, and severity of psychopathology. Preliminary data obtained before and after 6 months of treatment indicate a moderate correlation between changes in the DD-CGAS scores and changes

of treatment indicate a moderate correlation between changes in the DD-CGAS scores and changes on the Aberrant Behavior Checklist and the Clinical Global Impressions-Improvement scores.  Clinical Uses The CGAS is a clinically useful instrument that provides an overall score of the level of functioning of a child. The DD-CGAS is specifically useful for rating functioning in the context of autism or other pervasive developmental disorder and is a rela- tively simple way of indicating the observed

other pervasive developmental disorder and is a rela- tively simple way of indicating the observed global functioning relative to the expected functioning based on normal development. The DD-CGAS allows direct comparisons to be made between functioning of children with autism and functioning of children with other mental disorders such as schizophrenia, depression, or anxiety.     Description The Children’s Psychiatric Rating Scale (CPRS) is a multidimensional rating scale of childhood

The Children’s Psychiatric Rating Scale (CPRS) is a multidimensional rating scale of childhood psychopathology. The CPRS is not diagnostic but rather a broad-ranging rating scale of symptoms and behaviors which may contribute to diagnosis. In addition, the scoring system enables the rating of severity of symptoms and presentation. Since the scale measures the presence or absence of symptoms over a particular period of time, it has been a useful instrument of treatment efficacy and has regularly

a particular period of time, it has been a useful instrument of treatment efficacy and has regularly been the instrument of choice employed in clinical trials. Owing to the established subscale structure, an abbreviated form, comprised of 14 questions relevant to the autism spectrum, has been employed in studies evaluating treatment efficacy in autistic children. However, more recently the European Medicines Agency (EMA 2017), Guideline on the clinical development of medicinal products for the

Medicines Agency (EMA 2017), Guideline on the clinical development of medicinal products for the treatment of Autism Spectrum Disorder (ASD), has suggested the use of the Childhood Autism Rating Scale (CARS) for baseline assessment and outcome measures in clinical trials. It has also demonstrated value in evaluating psychopathology in autism, clarifying major behavioral dimensions and identifying distinct subtypes (Overall and Campbell 1988; Overall and Pfefferbaum 1982; Pfefferbaum and Overall

distinct subtypes (Overall and Campbell 1988; Overall and Pfefferbaum 1982; Pfefferbaum and Overall 1983). The CPRS is a clinician-rated scale, based on (1) behaviors observed during clinical interview and (2) the child’s reporting of symptoms. The autism-specific scale is based on observation only.  In the Diagnostic and Statistical Manual, third edition (DSM-III, American Psychiatric Associa- tion [APA] 1980), a diagnosis of infantile autism is made when four behavioral characteristics are

tion [APA] 1980), a diagnosis of infantile autism is made when four behavioral characteristics are present: (1) pervasive lack of responsiveness to other people, (2) gross deficits in language devel- opment, and (3) bizarre responses to the environ- ment. These behaviors can be rated, whereas characteristic (4) speech deviance, such as echo- lalia and pronominal reversal, may be more diffi- cult to evaluate in individuals with little speech. These behaviors are deemed well represented by the 14

evaluate in individuals with little speech. These behaviors are deemed well represented by the 14 items on the autism scale of the CPRS (Table 1).  Historical Background The CPRS was originally developed by the Psy- chopharmacology Research Branch of the NIMH as a general-purpose instrument (1976). It fea- tured in the ECDEU Assessment Manual for Psy- chopharmacology Revised (Guy 1976) among other pediatric scales integral to clinical drug eval- uation programs. At this stage, the CPRS was

other pediatric scales integral to clinical drug eval- uation programs. At this stage, the CPRS was regarded as experimental, and no standardization data were available. The instrument was designed to be employed within a semi-structured interview format to be completed by clinicians and generally used alongside parent- and teacher-completed mea- sures. The rating system facilitated assessment at various stages of a clinical trial, generally prior to the commencement of treatment, during the

at various stages of a clinical trial, generally prior to the commencement of treatment, during the middle and at the end of treatment. It was designed for use with children up to the age of 15 years.  Children’s Psychiatric Rating Scale, Table 1 Items with respective numbers on CPRS (Overall and Campbell 1988)

| Withdrawal (8) | Loud voice (25) | Rhythmic motions (28) | |---|---|---| | Negative and uncooperative (10) | Abnormal object relationships (7) | Hypoactivity (5) |
| Unspontaneous relationship to examiner (16) | Fidgetiness (3) | Underproductive speech (2) |

| Hyperactivity (4) | Angry affect (11) | Other speech deviance (27) | | Lability of affect (20) | Low voice (24) | |  The first 28 items were rated on direct obser- vation of behaviors at interview, while the latter 34 were rated on the basis of the child’s verbal reporting of symptom presence at the time of the interview or during the preceding 7 days. Ratings on a Likert scale were possible from not answered, not present, very mild, mild, moderate, moderately severe, and severe to extremely

not answered, not present, very mild, mild, moderate, moderately severe, and severe to extremely severe. The seven-point scale was effectively derived from the Adult Brief Psychiatric Rating Scale (Overall and Gorham 1962). The scoring was further developed by Fish (1985). The rating scale comprised of two sections (the original 63 items): in Section A, the clinician rated both the observed behavior at interview and the child’s reporting of symptoms or behaviors. Section B represented the

behavior at interview and the child’s reporting of symptoms or behaviors. Section B represented the clinician’s overall view based on the integration of a range of data avail- able, including maternal reports and school records. Hence, additional areas were rated by clinicians with respect to clusters of behavior such as withdrawal, aggressive behavior, hyper- active behavior, inadequate or immature behavior, and organic impairment. Ratings were made on the degree of abnormal- ity from 0 to 9:

behavior, and organic impairment. Ratings were made on the degree of abnormal- ity from 0 to 9: none, present but not significant, significant but mild, moderate, moderately severe, severe, very severe and may be paralyzing, item not relevant to child, and not known or not ascertained. The measure has been valuable owing to the breadth of the range of symptoms and behavioral manifestations assessed while not being limited to the DSM diagnostic criteria, since the scale was originally designed

while not being limited to the DSM diagnostic criteria, since the scale was originally designed prior to the publication of the DSM-III.  Overall and Campbell (1988) proposed an abbreviated version of the CPRS to evaluate psychopathology in autistic children. They evaluated a subtest of the CPRS, comprising of 14 questions relevant to the diagnosis of autism. Fourteen of the 28 questions of the CPRS are included. Since these are based on observed behaviors and symptoms, the subtest is useful

CPRS are included. Since these are based on observed behaviors and symptoms, the subtest is useful for those autistic children who have little or no communicative language and who are severely disturbed or severely developmen- tally delayed.  Psychometric Data No normative data existed for the CPRS in its original form (Guy 1976). Factor-analytic studies have subsequently supported a 6-syndrome subscale structure, hence establishing the internal validity of the CPRS (Overall and Pfefferbaum

subscale structure, hence establishing the internal validity of the CPRS (Overall and Pfefferbaum 1982; Pfefferbaum and Overall 1983). Evaluation of the diagnostic factor structure of the CPRS (Overall and Pfefferbaum 1982; Pfefferbaum and Overall 1983) confirmed the scale’s usefulness in evaluating psychopathology and measuring treatment response in different clinical groups. Seven core factors were identified, namely, behavioral problems, depression, thought disturbance, psychomotor excitation,

identified, namely, behavioral problems, depression, thought disturbance, psychomotor excitation, psy- chomotor retardation, nervous/tension, and orga- nicity. Furthermore, cluster analysis revealed six distinct clusters of symptoms and features, thus enabling the grouping together of those DSM-III diagnoses which tend to have core features and symptom profiles in common. Treatment evalua- tion could thus be focused on the particular dimensions of symptom presentation.  Studies have served to

could thus be focused on the particular dimensions of symptom presentation.  Studies have served to demonstrate both predic- tive and construct validity in testing diagnostic classifications. However, like other autism rating scales, the CPRS was developed prior to the revi- sion of autism diagnostic classification (APA 2013; Thabtah and Peebles 2019). To date no data are available regarding how well the autism subscale maps onto the two DSM-5 domains of ASD.  Clinical Uses The CPRS is a

how well the autism subscale maps onto the two DSM-5 domains of ASD.  Clinical Uses The CPRS is a general-purpose instrument for assessment of a broad range of childhood psychopathology. While the measure is used in its complete form, i.e., a 63-item rating scale, autism-specific research has focused on a subset of 14 items relevant to the condition. The first 28 items on the CPRS are deemed valuable since they are items which are rated on the basis of clinical observation of behavior at

valuable since they are items which are rated on the basis of clinical observation of behavior at interview. Hence, they do not rely on a particular level of language development. Fourteen of these 28 items have been deemed relevant for the assessment and classification of symptoms and features observed in autistic children (Overall and Campbell 1988). The behaviors included in this subset are well matched with the behavioral criteria for infantile autism first described in the DSM-III (APA

well matched with the behavioral criteria for infantile autism first described in the DSM-III (APA 1980), including deficits in language development, odd responses to the environment, and lack of responsiveness to other people. Overall and Campbell (1988) conducted factor analysis of the subset of the CPRS and noted four core aspects which differentiated autistic children, namely, autism, anger/uncooperativeness, hyperactivity, and speech deviance. In other words, scores on the scale

anger/uncooperativeness, hyperactivity, and speech deviance. In other words, scores on the scale differentiated subgroups. However, these did not necessarily differentiate autistic children from children with other psychiatric conditions.  The 14-item CPRS continued to be employed as the measure of choice in clinical trials (Desousa 2010). It is generally completed by the clinician (s) following videotaped observations of autistic children. This is in conjunction with parental rat- ings of

videotaped observations of autistic children. This is in conjunction with parental rat- ings of behavior and symptoms, e.g., Aberrant Behavior Checklist (ABC) and the Conners0 Par- ent Rating Scale – Revised (CPRS-R), as well as other clinician ratings such as the Clinical Global Impression Scale (CGI). The rating scale has dem- onstrated value in open-label and controlled psy- chopharmacological trials. Improvement of 25% or more on identified symptoms compared with baseline ratings suggests

trials. Improvement of 25% or more on identified symptoms compared with baseline ratings suggests child is a responder to the medication. Studies have evaluated tolerability, long-term effects, and efficacy of specific psychotropic medication in autistic disorder as well as comparisons of different medication within this group. Studies of specific psychiatric features associated with autism spectrum disorders and effects of psychopharmacology have employed the CPRS-14 (Gagliano et al. 2004; Desousa

and effects of psychopharmacology have employed the CPRS-14 (Gagliano et al. 2004; Desousa 2010). More recent clinical trials (Lemonnier et al. 2017) have followed the EMA guidelines (2017) for evaluating efficacy and impact of treatment, employing measures such as the Childhood Autism Rating Scale (CARS), Social Responsive- ness Scale (SRS), and the Clinical Global Impres- sions (CGI).  See Also ▶Childhood Autism Rating Scale ▶DSM-5 ▶DSM-III ▶Risperidone ▶Screening Measures ▶Social

See Also ▶Childhood Autism Rating Scale ▶DSM-5 ▶DSM-III ▶Risperidone ▶Screening Measures ▶Social Responsiveness Scale ▶Treatment Integrity   Definition The Institute for Child Development (ICD) at the State University of New York at Binghamton promotes the welfare of children who are chal- lenged by developmental, learning, and emotional disorders. The Institute serves as the focus for service, research, undergraduate, and graduate training programs and the dissemination of basic and applied

research, undergraduate, and graduate training programs and the dissemination of basic and applied research. The Institute supports specific units that provide treatment and educational services for children within an evidence-based model. The Children’s Unit for Treatment and Evaluation provides services for children with autism spectrum disorders and their families in the context of Early Intervention, Preschool, and School Age programs as well as additional com- plimentary programs, such as

Preschool, and School Age programs as well as additional com- plimentary programs, such as its Diagnostic Eval- uation Clinic.  Historical Background The ICD was founded by Dr. Raymond G. Romanczyk, a faculty member and clinical psychologist, in 1974, located on the State Uni- versity of New York (SUNY) at Binghamton cam- pus. An ICD program, the Children’s Unit for Treatment and Evaluation, was established in 1975 in cooperation with a small group of parents who wished to receive evidence

was established in 1975 in cooperation with a small group of parents who wished to receive evidence based and inten- sive services for their children. Given the efficacy of the program, parents worked with local and state legislators to provide the Unit an appropriate connection to the region’s continuum of services. Special status was granted in 1977 through an act of the New York State Legislature (Senate Bill 5911-A) which allows the Unit to exist with a dual status as a fully certified New

(Senate Bill 5911-A) which allows the Unit to exist with a dual status as a fully certified New York State Education Department private school and at the same time organizationally part of SUNYat Bing- hamton. The bill permits school districts, counties, and other state agencies to contract directly with the Unit for services. This also allows the Unit to function as a separate entity at the University level, rather than as the more typ- ical “lab school” or time-limited grant-funded project.

level, rather than as the more typ- ical “lab school” or time-limited grant-funded project. The Unit was the first in New York to provide full-day intensive evidence-based ser- vices for children in the early intervention and preschool age range.  At its start, the Unit served just six children from the immediate area. The catchment area has grown quite large and now includes the New York State counties of Broome, Tioga, Cortland, Tomp- kins, Chenango, and Onondaga and the Pennsyl- vania

counties of Broome, Tioga, Cortland, Tomp- kins, Chenango, and Onondaga and the Pennsyl- vania counties of Bradford, Susquehanna, and Sullivan, representing locations across urban, suburban, and rural areas. Currently approxi- mately 65 children commute daily to the program from within an approximately 90 mile radius. The ICD has had multiple locations on the campus since 1973. In 2001 the Institute was moved to a spacious specially constructed build- ing for the sole use of the ICD. It is

was moved to a spacious specially constructed build- ing for the sole use of the ICD. It is located next to the campus preschool services building, permit- ting ease of cooperative programs for peer-based activities. In 2013 Dr. Jennifer M. Gillis, faculty member, clinical psychologist, and licensed behavior analyst, became the co-director.  Rationale or Underlying Theory An autism spectrum disorder affects not only the individual but also the family, the community, and the broader society as

affects not only the individual but also the family, the community, and the broader society as well. As a group, the impact on families is greater and more complex than many other disorders. This requires an intensity, quality, and precision of educational and clinical services that are not only directed at the individual with an autism spectrum disorder but also the family. Comprehensive service delivery cannot be impeded by bias, inappropriate, and antiquated organizational structures, low

delivery cannot be impeded by bias, inappropriate, and antiquated organizational structures, low expectation, or by compartmentalization of services. The guiding principle of the Institute for Child Development is that providing a caring, warm, supportive, enriched environment that respects the dignity of individuals and celebrates their unique qualities and potential is the mini- mum starting point for educational and clinical services. This principle is paired with a comprehensive commitment

for educational and clinical services. This principle is paired with a comprehensive commitment to evidence-based services drawing upon well-conducted, methodologically sound, empirical research. Thus, educational and clinical research is utilized on a continuing basis, and the ICD provides mechanisms and opportu- nities for all program staff to acquire and use research information on a timely basis, which includes weekly in-service training, journal club, visiting speakers, and consultants, as

which includes weekly in-service training, journal club, visiting speakers, and consultants, as well as attendance at professional conferences. Another priority is that there must be extensive, precise, quantitative, and frequent child assess- ment that permits the daily implementation of an objective feedback loop for decision-making regarding appropriate goals, procedures, and progress.  Given the emphasis on evidence-based approaches to intervention, current practice is based upon research

the emphasis on evidence-based approaches to intervention, current practice is based upon research in behavioral approaches (applied behavior analysis and cognitive behav- ioral therapy), developmental models (Early Start Denver Model), nomothetic and ideographic assessment (such as functional behavior assess- ment), family systems, curriculum selection, basic attention and learning processes, social develop- ment, and comorbid disorders. The program employs a comprehensive model, but it is not

develop- ment, and comorbid disorders. The program employs a comprehensive model, but it is not based on a specific single “model” or particular “approach,” but rather is dynamically based on contemporary, methodologically sound, peer- reviewed research that has been replicated.  Goals and Objectives The program provides full-day, 12-month services with emphasis on individual evaluation of each child’s assets and deficits, past history of services and response, current functioning, the specific

child’s assets and deficits, past history of services and response, current functioning, the specific parameters of the child’s learning pattern, and an analysis of maintaining factors of current behavior patterns using functional behavior analysis. The goal of the program is to remediate skill deficits that prevent children from participating at their potential in the continuum of education services in their community and to provide families with training and support for their own needs. Empha-

in their community and to provide families with training and support for their own needs. Empha- sis is placed on acquisition of communication skills, social interaction skills, self-regulation skills, and reduction of stereotyped behavior and restricted interests. The average length of enroll- ment is 2.5 years as the emphasis is upon rapid reintegration into services in the child’s local com- munity. Thus the ICD is not a long-term alternate educational placement but rather an intensive,

munity. Thus the ICD is not a long-term alternate educational placement but rather an intensive, focused, short-term intervention program. Prioritized goals within a comprehensive program produce rapid transition to services in the child’s community.  Treatment Participants Children between the age of 1 and 11 are eligible to attend the program. Referrals come from phy- sicians, county health departments, and school districts via the NY system of Early Intervention Officials, the Committee on

and school districts via the NY system of Early Intervention Officials, the Committee on Preschool Special Education, and the Committee on Special Educa- tion. Because the catchment area is so expansive, admission criteria is based on a relative analysis of the child and family’s needs in the context of the resources of the continuum of services in the community of residence. The majority of children are diagnosed with autism spectrum disorder and have a history of poor response to intervention

are diagnosed with autism spectrum disorder and have a history of poor response to intervention prior to admission. Parent willingness and ability to participate in the child’s program and attend family service groups are highly variable upon admission and are not a selection criteria. It is explicit that admission is not based on parent’s willingness to participate in ongoing research pro- jects, as such a requirement would be deemed coercive.  Treatment Procedures Comprehensive intervention

as such a requirement would be deemed coercive.  Treatment Procedures Comprehensive intervention requires that at min- imum primary focus is placed on the core ASD areas of social communication and social interac- tion and restricted, repetitive, and stereotyped pat- terns of behavior, interests, and activities. Further, salient comorbid disorders must be assessed and addressed, e.g., anxiety disorders. Next, a continuum model for comprehensive intervention is used (Romanczyk and Gillis 2010)

Next, a continuum model for comprehensive intervention is used (Romanczyk and Gillis 2010) that includes several critical procedural components: *   Assessment (nomothetic and ideographic) *   Curriculum planning (goal selection, prioriti- zation, and sequencing) *   Intervention methodology (evidence based) *   Ongoing progress monitoring (measurement for decision-making feedback loop) *   Family/caregiver involvement (to address both child and self needs) It is these components that are used

involvement (to address both child and self needs) It is these components that are used to achieve acquisition of skills and address behavior prob- lems with emphasis on generalization of skill rep- ertoires in normative settings. A comprehensive developmentally organized curriculum, the IGS Curriculum (Romanczyk et al. 2000), is used to guide and structure assessments and precise goal specification. Utilization of a curriculum that pro- vides a developmentally sequenced compendium of goals

Utilization of a curriculum that pro- vides a developmentally sequenced compendium of goals permits identification of skills associated with the child’s strengths and weaknesses, guides further assessment of the limits of the child’s skills and performance, and permits meaningful discus- sion of goal selection and priorities with parents as it helps in supplementing their knowledge of child development. A comprehensive curriculum that is developmentally sequenced such as the IGS ensures that

A comprehensive curriculum that is developmentally sequenced such as the IGS ensures that assessment is directly linked to func- tional instructional goals. Appropriate staff are also certified Early Start Denver Model (ESDM) therapists and also trained in the use of the Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP).  Settings for instruction, instructional proce- dures, and specific goals present a complex mix of variables. Their interaction must be addressed to allow

and specific goals present a complex mix of variables. Their interaction must be addressed to allow optimal configuration from the perspec- tive of each factor. As an example, if emphasis is currently upon transition between two instruc- tional settings, then goals and procedures need to be adjusted to be appropriate within that context. Likewise, if focus is upon acquisition of a specific goal set, then settings and procedures are adjusted to maximize speed and strength of learning. This is a

then settings and procedures are adjusted to maximize speed and strength of learning. This is a dynamic process, allowing adjustment to changing child and family charac- teristics, as well as resource factors, while devel- oping more and more sophisticated child repertoires. No one variable has primacy, with emphasis placed on a coherent comprehensive program. Social development is a priority, and the pro- gram is designed to improve social skills and social problem-solving. Activities are

and the pro- gram is designed to improve social skills and social problem-solving. Activities are constructed for individual strengths and deficits. Activities and projects focus on skill strengthening via use of modeling, rehearsal, role-playing, cognitive behavior therapy, and anxiety reduction approaches.  A second component is the strong cooperation with the University Campus Preschool which is in a building physically adjacent to the Institute. Children from the Institute attend the

which is in a building physically adjacent to the Institute. Children from the Institute attend the preschool on a part-time basis as a transition step as part of preparation for returning to program’s in their school district of residence. Staff of the Institute accompany the children and serve as guides for the preschool staff to integrate the children into typical activities.  A third component is the “Buddy Group,” an after school therapeutic social skills program. The program focus is on

is the “Buddy Group,” an after school therapeutic social skills program. The program focus is on increasing the quality of social interactions through participating in a vari- ety of on-site and community activities with typ- ical peers. Peer volunteers are area middle-school children who function as “buddies” by relating to children with ASD as they would any other friend. This provides realistic feedback and experiences as would be encountered in typical casual social settings and allows for

feedback and experiences as would be encountered in typical casual social settings and allows for more success in meeting complex social expectations. Teaching objectives focus on age appropriate activities, learning social expectations, and responding appropriately to the inherently variable consequences of social interaction.  A fourth component is an extension that we term “SLC Saturday.” The Institute has a very large specially constructed playground with a state-of-the-art injury

The Institute has a very large specially constructed playground with a state-of-the-art injury prevention focus and vari- ous types of play areas that permit quiet self-play as well as areas that support and encourage social interactive play. It can accommodate more than 150 individuals comfortably and safely. It is used on a daily basis for children enrolled at the Insti- tute and is the focus for social development. SLC is the acronym for Social Learning Center. This facility is opened on

for social development. SLC is the acronym for Social Learning Center. This facility is opened on Saturdays for families of the Institute as well as the community, permitting a safe and choreographed setting for interaction between children with ASD and typically devel- oping children.  Family Focus A separate but highly intertwined program emphasizes individualization of services. Family involvement is strongly encouraged and supported. Because a child with an ASD affects the whole family,

is strongly encouraged and supported. Because a child with an ASD affects the whole family, this greatly influences the fam- ily services provided. In addition to instruction in specific procedures and skills so that families can conduct teaching programs at home, measure pro- gress on specific skills, and objectively evaluate their child’s performance, the staff individually tailor parent services to the needs and values of each family. Families can choose from a variety of ongoing services that

to the needs and values of each family. Families can choose from a variety of ongoing services that include: *   Didactic instruction to implement intensive language and social/emotional programs at home. *   Homework programs with parent with training so that they can conduct more traditional “homework” pre-academic/academic, leisure, and self-help activities at home. *   Periodically themes are identified for a “family-friendly” personal goal. Activities focus on workshops for parents,

are identified for a “family-friendly” personal goal. Activities focus on workshops for parents, individual support meetings, and parents participating in school activities. Staff then increase emphasis on addressing these goals at school and paralleling with home programs to maximize generalization and thus family success.  An important additional program component is parent wellness. Wellness sessions are devoted to assisting caregivers in appropriately addressing individual family member

sessions are devoted to assisting caregivers in appropriately addressing individual family member needs with particular emphasis on stress management. Components of the program include recognizing and quantifying stress, changing stress responding through relax- ation training, diaphragmatic breathing, progres- sive muscle relaxation, guided imagery, yoga, time management, and cognitive restructuring approaches.  Technological Innovation There is significant use of technology, particularly

approaches.  Technological Innovation There is significant use of technology, particularly computer technology, with individuals with ASD. However, great caution must be exercised in applying a technological approach to a problem that is at its core a social interaction disorder. The ICD has been applying technology to the provision of services since the 1970s and has been acknowledged as a pioneer in this area. Staff are provided with sophisticated organiza- tional systems and technology to

in this area. Staff are provided with sophisticated organiza- tional systems and technology to address the program priorities. Appropriate utilization, how- ever, requires precise matching of need with solution. A major focus has been to provide staff with useful tools that match their needs and abilities for application in complex and changing circumstances.  From an administrative perspective, the prob- lem of efficiently collecting, organizing, interpreting, and monitoring the voluminous

the prob- lem of efficiently collecting, organizing, interpreting, and monitoring the voluminous information need to achieve comprehensive pro- gram goals represents a continuing challenge. We utilize a series of computer databases to organize each student’s educational goal plan, specific habilitative goals, daily and monthly progress on each goal, graphs of progress, history of educa- tional goals, and evaluation of goals. Our curric- ulum database is connected to above the databases, which

and evaluation of goals. Our curric- ulum database is connected to above the databases, which allows the selected goals from the IGS to be imported into a student’s goal plans’ database. From this database, printed reports are generated as well as large screen video projection for staff meetings for review of individual chil- dren’s goals and progress. The use of extensive computer-based analytic tools for staff, high- efficiency database software for goal selection and monitoring, and extensive

tools for staff, high- efficiency database software for goal selection and monitoring, and extensive use of handheld computing devices with custom-developed soft- ware for numerous specialized activities is essen- tial for efficient day-to-day operation within a normative, constrained program budget. The twin goals of the technology program are to improve accuracy and speed of data-based decision-making while simultaneously reducing staff “paperwork” tedium which in turn allows more time to focus

while simultaneously reducing staff “paperwork” tedium which in turn allows more time to focus on child and family needs.  Efficacy Information The ICD is one of the ten model programs cited in the Educating Children with Autism report of the National Research Council (2001) that was commissioned by the US Department of Educa- tion. The Committee on Educational Interventions for Children with Autism utilized specific selec- tion criteria in their search for model programs, based upon published

utilized specific selec- tion criteria in their search for model programs, based upon published reports and frequency of citation. They identified ten programs based upon their criteria, to illustrate “state-of-the-art” model approaches, which included the Children’s Unit for Treatment and Evaluation.  Because the ICD is an evidence-based program as described above, there is a large body of research studies that are constantly increasing. Some relevant summaries of this research body include:

studies that are constantly increasing. Some relevant summaries of this research body include: National Research Council (2001). Educating Children with Autism. Committee on Educa- tional Interventions for Children with Autism. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press. National Autism Center. (2009). National Stan- dards Project - Addressing the need for evidence-based practice guidelines for autism spectrum disorders, from http://www.

the need for evidence-based practice guidelines for autism spectrum disorders, from http://www. nationalautismcenter.org/about/national.php The National Professional Development Center on Autism Spectrum Disorders (2010). http:// autismpdc.fpg.unc.edu/ Odom, S., Boyd, B., Hall, L., & Hume, K. (2010). Evaluation of comprehensive treatment models for individuals with autism spectrum disorders. Journal of Autism and Developmen- tal Disorders, 40, 425–436. Romanczyk, R.G., Turner, L.B., Sevlever,

of Autism and Developmen- tal Disorders, 40, 425–436. Romanczyk, R.G., Turner, L.B., Sevlever, M. and Gillis, J.M., (2015). The Status of Treatment for Autism Spectrum Disorders: The Weak Relationship of Science to Interventions. In Lilienfeld, Lohr, and Lynn (Eds.), Science and Pseudoscience in Contemporary Clinical Psychology (2nd Edition). NY, NY: Guilford Press. Romanczyk, R.G., and McEachin (Eds), (2016). Comprehensive Models of Autism Spectrum Disorder Treatment: Points of Divergence and

(Eds), (2016). Comprehensive Models of Autism Spectrum Disorder Treatment: Points of Divergence and Convergence. Springer, ISBN: 978–3–319- 40903-0. New York State Department of Health (2017). New York State Department of Health Clinical Practice Guideline on Assessment and Inter- vention Services for Young Children (Age 0–3) with Autism Spectrum Disorders (ASD): 2017 Update. Support from New York State’s Title V Maternal and Child Health Block Grant, the New York State Autism Awareness and

York State’s Title V Maternal and Child Health Block Grant, the New York State Autism Awareness and Research Fund, and the Far Fund. NYS Depart- ment of Health, Albany, NY. Retrieved as: https:// www.health.ny.gov/community/infants_children/ early_intervention/autism/docs/report_recommen dations_update.pdf  Outcome Measurement For an applied educational/clinical setting, it is not possible to determine which specific factor or combination of factors are the most influential in outcome. That

determine which specific factor or combination of factors are the most influential in outcome. That requires con- trolled research with standardized procedures, specifies duration, and appropriate control groups. The explicit goal of the ICD is to quickly transition children from diverse fami- lies and communities to their home school districts and to enable them to participate in the services in their community. The specifics of this transition are unique for each child and do not represent the

their community. The specifics of this transition are unique for each child and do not represent the achievement of an abso- lute level of functioning. The duration of par- ticipation is variable within the average of 2.5 years.  Within these non-research parameters, approximately 50% transition to typical educa- tional settings, 25% to “inclusion opportunity” classrooms, and 25% to “self-contained” class- rooms. Importantly, recall that our exit criteria are specific to child, family, and school

class- rooms. Importantly, recall that our exit criteria are specific to child, family, and school district goals and do not reflect “absolute” criteria. Thus a given family and school district may have typical placement as their goal, while another family and district have the goal of as quickly as possible having the child participate in their continuum of services (this is often the case for children who must travel substantial distances each day to the program). The formal research that is

who must travel substantial distances each day to the program). The formal research that is conducted at the ICD focuses primarily upon measurement/assess- ment, process, and focused intervention out- comes. Some recent examples are: Aponte, C. & Romanczyk, R.G. (2016). Assess- ment of Feeding Problems in Children with Autism Spectrum Disorder. Research in Autism Spectrum Disorders, 21,61–72. Cavalari, R.N.S. & Romanczyk, R.G. (2015). Quantifying Supervisory Decision Making: Eye-Tracking

Cavalari, R.N.S. & Romanczyk, R.G. (2015). Quantifying Supervisory Decision Making: Eye-Tracking Technology Applications for the Promotion of Child Safety. Journal of Behavioral Decision Making. DOI: 10.https:// doi.org/10.1002/bdm.1857. Turner, L.B.& Romanczyk, R.G (2012). Assess- ment of fears and phobias in children with an autism spectrum disorder. Research in Autism Spectrum Disorders, 6, 1203–1210. Callahan, E. H., Gillis, J. M., Romanczyk, R. G., & Mattson, R. E. (2011). The behavioral

Callahan, E. H., Gillis, J. M., Romanczyk, R. G., & Mattson, R. E. (2011). The behavioral assessment of social interactions in young chil- dren: An examination of convergent and incre- mental validity. Research in Autism Spectrum Disorders, 5, 768–774. Gillis, J.M., Callahan, E.H. & Romanczyk, R.G. (2010). Assessment of social behavior in children with autism: The development of the Behavioral Assessment of Social Interactions in Young Children. Research in Autism Spec- trum Disorders.

Assessment of Social Interactions in Young Children. Research in Autism Spec- trum Disorders.  Qualifications of Treatment Providers All professional staff hold appropriate licenses and certification for their respective profes- sions. Additionally, 30% of the professional staff are also Board Certified Behavior Ana- lysts. The staff represent the following professions: Clinical Psychology Special Education Behavior Analysis Nursing Speech Pathology Occupational Therapy School Psychology Adaptive

Behavior Analysis Nursing Speech Pathology Occupational Therapy School Psychology Adaptive Physical Education  In addition to professional staff, there are full- time staff in teacher aide, administrative, and tech- nical staff positions. The ICD also has extensive educational pro- grams. At the undergraduate level, there is an intensive four-course sequence, three of which have practicum components that complement the requirements of the major in psychology. The course sequence has been

that complement the requirements of the major in psychology. The course sequence has been evaluated by the Behav- ior Analyst Certification Board as a Verified Course Sequence. Selected graduate students in the doctoral clinical psychology program, in addi- tion to the program requirements, participate for 4 years as staff members at the ICD under the supervision of senior staff. Training is also pro- vided for select postdoctoral fellows as well as medical students.   Historical Background The

pro- vided for select postdoctoral fellows as well as medical students.   Historical Background The first initiatives providing help for individuals with Autism Spectrum Disorder(ASD) in Chile were, as it is usually the case, spearheaded by par- ents of autistic children, whose initiatives founded many organizations that provide services to this day. The largest national support organization, ASPAUT, or the Chilean Association of Parents and Friends of Autistics, was founded in 1983 in Santiago.

or the Chilean Association of Parents and Friends of Autistics, was founded in 1983 in Santiago. Today, the nonprofit organization has branches in five of Chile’s 15 regions, with 1,400 members nationwide. Its services include four schools, five family support groups, and one vocational training center. Though each location is associated by name, each operates as an independent entity.  Legal Issues, Mandates for Services The department of special education of the Min- istry of Education indicates

Mandates for Services The department of special education of the Min- istry of Education indicates that in 2009, 589 stu- dents diagnosed with autism were receiving educational services under the law Decreto Supremo N° 815/1990 which guarantees special education services to individuals with Autism, severe Dysphasia, and/ or Psychosis.  Overview of Current Treatments and Centers Multiple research findings indicate that early iden- tification and diagnosis of ASD can improve opportunities for

findings indicate that early iden- tification and diagnosis of ASD can improve opportunities for children to benefit from inter- ventions and lessen the burden on parents (Zwaigenbaum et al. 2013). The key to early diagnosis is access to competent and effective diagnostic and treatment services. In Chile, health care can be accessed through both the public and private systems.  Public Health Care Though Chile does provide services through a public health-care system, hospitals are not equipped to

Chile does provide services through a public health-care system, hospitals are not equipped to attend to individuals with an ASD, even though several laws regarding the disability exist. Parents who do receive medical services through the public health care system have great difficulties in making appointments with special- ists such as neurologists or psychiatrists, and if they are successful, encounter very long waiting periods, which, in turn, inhibits the possibility of an early diagnosis

encounter very long waiting periods, which, in turn, inhibits the possibility of an early diagnosis and thus early intervention. Even after a diagnosis is made, it is practically impossible to access support and treatment from a multidisciplinary team, on a continuous basis, through the public health system. Furthermore, the government does not guaranty coverage of any treatment related to ASD. In addition to the general public health-care system, there is also a list of 69 illnesses or

ASD. In addition to the general public health-care system, there is also a list of 69 illnesses or conditions for which the government guarantees free treatment. ASD is not included in this list (Ministerio de Salud 2010).  Private Health Care In Chile, there is also a private health-care system. Unfortunately, even after paying high premiums for private health insurance, the coverage for the payment of specialist services is very limited, sometimes as low as one or two sessions a year, or the

of specialist services is very limited, sometimes as low as one or two sessions a year, or the coverage of a very small percentage of the session’s actual cost. Typically, professionals in the private sector work independently, not in an integrated center or fashion, leaving parents with no choice but to shuttle their child to different specialists, who do not communicate with one another, for different treatments. High costs and inadequate service provision through the private health system

different treatments. High costs and inadequate service provision through the private health system places great financial, emotional, and practical strains on families. Very few private centers for developmental disabilities have a multidisciplinary staff that works in an integrated fashion.  Obstacles to Quality Service Provision Autism spectrum disorders place huge strains on families. These can be quantified in terms of financial investment, time lost from work, and time not spent with other

be quantified in terms of financial investment, time lost from work, and time not spent with other family members. Other strains can only be described, such as levels of stress experienced, impacts on relationships, the mental health status of other family members, and lost personal time of professional careers. In fact, many families suffer from severe dysfunctional relationships leading to parental separation, anx- ious distress, and psychological problems in siblings.  Financial Burden One of

separation, anx- ious distress, and psychological problems in siblings.  Financial Burden One of the most common obstacles to receiving treatment services is that of lack of or restriction of financial means. All but one family interviewed for this study stated that their level of financial resources negatively affected the quantity as well as the quality of the treatment their child received. Only one family, one of substantial financial means, stated that the quantity of treatment that their son

one family, one of substantial financial means, stated that the quantity of treatment that their son received was adequate. Apart from the financial burden placed on fam- ilies by both the public and private health-care sectors, lack of professionals trained the area of Autism in Chile creates further obstacles to cor- rect diagnosis and early intervention. All children in this study were seen by various professionals including psychologists, neurologists, and child psychiatrists, and received

various professionals including psychologists, neurologists, and child psychiatrists, and received varying diagnoses. Many of these professionals have varying degrees of training and experience in ASD and also use a variety of classifications, nomenclature, and treat- ment approaches.  Diagnosis Of four families interviewed and four further cases reviewed, only one child in this study received a diagnosis of Pervasive Developmental Disorder (PDD) as a first diagnosis. Two children received

a diagnosis of Pervasive Developmental Disorder (PDD) as a first diagnosis. Two children received diagnosis of Dysphasia, three of a gen- eral language disorder, one of a nonspecific behavioral disorder, and one of Schizoid Person- ality Disorder, respectively, all previous to their diagnosis of ASD. Typically, the first profes- sionals to recommend an evaluation were speech therapists, either within the educational setting or in private practice. At least four children received their diagnosis of

the educational setting or in private practice. At least four children received their diagnosis of an ASD from a neurologist. There is a cultural bias against consulting with psychiatrists, leading to underconsultation with these professionals until later in the process. Def- icits in professional development and training in the area of ASD can be seen through significant delay in establishing an early and appropriate diagnosis and poor management in several of these cases.  Cultural Aspects

an early and appropriate diagnosis and poor management in several of these cases.  Cultural Aspects Obstacles to quality service provision and care can also be found in specific cultural aspects. One unexpected cultural aspect that presented itself in two interviews with center directors interviewed in this study was that of, what could be referred to, as cultural protectiveness. One director commented that professionals in Chile are often very guarded about their knowledge of a specific area and

that professionals in Chile are often very guarded about their knowledge of a specific area and do not want to share this or work collaboratively with others for fear of com- petition in the area. One director also stated that there is a lack of trained professionals in the area of ASD in Chile, notwithstanding, she would not employ any foreign professional, regardless of their training or experience, as “they would not know the reality of Chile.” These opinions were spontaneously expressed

as “they would not know the reality of Chile.” These opinions were spontaneously expressed without prompting through the interviewer’s questioning. Clinical work, following the psychoanalytic method, tends to be considered “in-doors” and “confiden- tial,” which leads to the lack of communication and poor team work in many instances.  Centralization Centralization of specialists and services that are available, to Santiago, the capital city of Chile and surrounding areas, poses further obstacles

available, to Santiago, the capital city of Chile and surrounding areas, poses further obstacles to diag- nostic, treatment, and support options for families outside the greater metropolitan Santiago area. The limitation of access to services can be seen in the distribution of autism-specific education and treatment services throughout the country. Except for Valparaiso and Concepcion, the rest of the country lacks trained professionals.  Service Provision The following diagram presents the

of the country lacks trained professionals.  Service Provision The following diagram presents the governmental bodies responsible for service provision for indi- viduals with disabilities, accessible in the public sector (Fig. 1). It is important to note that no governmental body provides direct funding or services for the individuals with ASD. This includes the National Service for Disability. If organizations would like to receive support through this office, they must apply for funding based

organizations would like to receive support through this office, they must apply for funding based on a project proposal. Funding is not guaranteed and is very difficult to obtain.  Educational Services According to the Ministry of Education, in 2013, there are 15 publicly funded schools throughout the country that offer educational services specif- ically to children with ASD. These schools are located in seven of Chile’s 15 geographical regions, with five located in the Metropolitan Region of

located in seven of Chile’s 15 geographical regions, with five located in the Metropolitan Region of Santiago and four in the neighboring region of Valparaiso. Thirteen of these schools are managed by nonprofit organizations that receive funding from the Ministry of Education, on a monthly basis, based on the number of children that attend. Two of these schools receive funding through their municipalities. There is no school directly run by a government body. There are no privately funded schools

There is no school directly run by a government body. There are no privately funded schools that specifically support children with autism.  Integration Programs Chilean law guarantees access to, and integration in, the educational system for all individuals with special education needs. The Ministry of Educa- tion satisfies this requirement by giving public schools the opportunity to have an “integration program” by way of contracting a multi- disciplinary professional team through govern- ment

program” by way of contracting a multi- disciplinary professional team through govern- ment funding. Public, no profit, or municipality schools receive funding based on what type of disabilities their special needs students have, and how many of them attend. Students with special needs are either considered to have transitory special needs or permanent special needs. Transitory special needs include borderline cognitive disabilities, Attention Deficit Disorders, and specific language and learning

borderline cognitive disabilities, Attention Deficit Disorders, and specific language and learning disorders. Permanent special needs include cognitive disabilities, physical disabilities, auditory or visual disabilities, and Autism.  According to the Ministry of Education, there are 4,500 public schools in Chile receiving funding for integration programs in 2013. Schools that accept students with special needs are required to redefine their educational projects, adapt their curricula, and

with special needs are required to redefine their educational projects, adapt their curricula, and implement support sys- tems based on the needs of their students. They must also evaluate and monitor these needs over time as well as train teachers and staff. Students receive a minimum of 10 h of special support per week. However, in order to receive funding for a multidisciplinary professional team, a school must have at least five transitory special needs students or two permanent special needs

a school must have at least five transitory special needs students or two permanent special needs students in the first grade level who wish to attend. This begs the question of what kind of support students with special needs in small communities or in rural areas receive, when pure lack of population limits their access to funding under the govern- mental initiative.  Some private schools also offer integration programs. The cost of professionals such as edu- cational psychologists is covered

integration programs. The cost of professionals such as edu- cational psychologists is covered by the tuition of all students. However, the parents of a student with special needs must personally cover the costs of any extra support their child might need including special education teachers, classrooms aids, tutors, or “shadows.” Private schools with integration programs often have very strenuous limits on the number of special education students they accept. This may be a limit of five special

limits on the number of special education students they accept. This may be a limit of five special needs students for a school population of over 1,000 students. Being private institutions, they are under no obligation to accept any student with special needs, if they so choose.  Organizations for ASD There are currently seven organizations in Chile that provide services specifically to individuals with ASD. These services include schooling options, diagnosis and therapeutic services, and

with ASD. These services include schooling options, diagnosis and therapeutic services, and psychoeducation and support for parents and families. Five of these organizations are located in San- tiago, one in Vina del Mar, about 120 km from the capital and one is an internet-based virtual support and advocacy group. Two of these organizations provide support and education through informa- tive websites and chat rooms. One of these spe- cifically supports individuals with Asperger’s Syndrome and

and chat rooms. One of these spe- cifically supports individuals with Asperger’s Syndrome and their families and only one, ASPAUT, has centers located in various regions of Chile.  Figure 2 below illustrates important aspects of services provided by these organizations includ- ing funding, diagnostic tools used, intervention methods utilized, and training of their directors: Four directors interviewed for this study, three special education teachers and one psychologist, stated that they had not

for this study, three special education teachers and one psychologist, stated that they had not received any education or special training about autism in their University courses. All of them subsequently sought specific education such as training in ABA and PECS either outside of Chile or through visiting interna- tional professionals, such as Theo Peeters. There are also at least two private rehabilitation centers in Santiago that provide diagnostic and therapeutic services to individuals

rehabilitation centers in Santiago that provide diagnostic and therapeutic services to individuals with ASD. Both provide services through multidisciplinary teams. One center utilizes standardized clinical diagnos- tic tools while another utilizes its own clinical method. One center provides treatment options based on a mix of ABA, Floortime and TEACCH, while the second provides group therapy, Floortime, and occupational therapy with sensory integration, speech therapy, medication treatment and

and occupational therapy with sensory integration, speech therapy, medication treatment and “Bio- Diets” in connection with two referring pediatricians.  Overview of Research Directions Children and adolescents under the age of 15 make up 22 % of Chile’s population (WHO 2010). As stated by the Chilean Ministry of Health, there have been no epidemiological prevalence studies of Autism or ASD conducted in Chile and there is no registry of diagnosed cases. How- ever, based on calculations using

in Chile and there is no registry of diagnosed cases. How- ever, based on calculations using the international estimate of prevalence of nine children with autism in 1,000 and 240,569 registered births in Chile in 2007, the Ministry (2011) estimates that the approximate number of children with a diag- nosis of an Autism spectrum disorder would be 2,156. According to the National Inquiry of Dis- ability in 2004, 15,000 individuals presented with severe language disorders, or one in 1,000, using

in 2004, 15,000 individuals presented with severe language disorders, or one in 1,000, using the population registry of 15,000,000 inhabitants of the 2002 census. This estimation does not dif- ferentiate between various possible diagnoses. Though Autism is a global issue, affecting individuals of all ethnicities, clinical and research publications in the field are heavily focused in developed countries, with the United States, Can- ada, and the United Kingdom being leading pub- lishers.

countries, with the United States, Can- ada, and the United Kingdom being leading pub- lishers. Comparatively, publications in the area of ASD in Latin America are rare, and almost non- existent in Chile (OARC 2012). Thusly, little is known about the magnitude of the problem.  In a review of the Chilean national publication database, only six articles related to ASD have been published in the last 27 years. Three of these articles are clinical descriptions, two are case studies and one is a

last 27 years. Three of these articles are clinical descriptions, two are case studies and one is a literature review.  Clinical Description Though autism is defined as a developmental dis- order that manifests itself in the first three years of childhood, its symptoms continue throughout an individual’s lifespan. Irarrázaval et al. (2005) pre- sented a clinical description of the disorder based on diagnostic guidelines of the DSM- IV- TR, prevalence, and psychopathology from infancy through

on diagnostic guidelines of the DSM- IV- TR, prevalence, and psychopathology from infancy through adolescence. Adult Autism was discussed through a case study of a 23-year old man brought to psychiatric evaluation by his mother. Neurobi- ological aspects of autism and the use of psycho- tropic medications in individuals with autism were also discussed. Quejada (2008) presented a clinical description of the disorder through genetic etiology, diagnosis, differential diagnosis, and prognosis.

of the disorder through genetic etiology, diagnosis, differential diagnosis, and prognosis. Flora de Barra also presented a clinical description of ASD based on the ICD- 10, genetic etiology, and differential diagnoses (1995).  Genetics Individuals with autism usually present with cog- nitive difficulties. About 16–40 % of those with cognitive problems present with profound defi- cits. Flora de la Barra et al. (1986) reviewed a case study of two identical twin girls with autism and profound

la Barra et al. (1986) reviewed a case study of two identical twin girls with autism and profound cognitive deficits, who presented with an apparently balanced chromosomal translocation.  Treatment After a definitive diagnosis of autism, it is impor- tant to evaluate how a child’s development can be supported and their symptoms alleviated. Morales et al. (1995) presented a case study in which a 9 year-old institutionalized boy with autism improved in the areas of language, social interac- tion,

year-old institutionalized boy with autism improved in the areas of language, social interac- tion, and stereotypical behavior after several months of systems-focused family therapy with his father, mother, and older brother.  Review of Aetiologies and Alternative Treatments A growing number of parents are adopting alter- native or complementary treatments such as diet restrictions, chelation therapy for heavy metals, the use of hyperbaric oxygen chambers, elimina- tion diets, as well as

therapy for heavy metals, the use of hyperbaric oxygen chambers, elimina- tion diets, as well as refusing to vaccinate their children due to a variety of beliefs regarding ASD aetiological hypothesis. Higuerra (2010) pre- sented a critical literature review of studies related to these treatments, highlighting their methodo- logical inadequacies and inconclusiveness. This article is very important to furthering professional development in Latin America. From a cultural perspective, the fact that

to furthering professional development in Latin America. From a cultural perspective, the fact that it is written in Spanish, by a Chilean, adds a great deal of validity and weight to its contents. Though research in the area of autism in Chile is scarce, the articles that do exist seem to repre- sent the level of knowledge of the field among some professionals, as well as accounts of clinical work with patients. It is important to note that there are no articles published in PubMed specifically

with patients. It is important to note that there are no articles published in PubMed specifically related to Chile and Autism  Government Publications The Chilean government has published three informative guides on ASD for teachers and health-care professionals, respectively: two through the Ministry of Education and one through the Ministry of Health.  Ministry of Education Both guides from Ministry of Education are writ- ten specifically for teachers. One focuses on detection, intervention,

of Education are writ- ten specifically for teachers. One focuses on detection, intervention, and teaching methods for solely children in the preschool age group, while the second focuses on all schooling levels, includ- ing university. For the preschool level, the guide begins by describing ASD based on the DSM- IV-TR diag- nostic criteria, history of the diagnosis and the three areas of impairment. There is also a pre- sentation of aetiological theories. The guide also presents guidelines for

There is also a pre- sentation of aetiological theories. The guide also presents guidelines for early detection and inter- vention, as well as suggestions on how to speak to families if a need for a clinical evaluation is suspected. Lastly, the guide presents recommen- dations for the educational-teaching process. It gives concrete examples for preparing lessons, how to structure the learning environment based on the needs presented through the disorder, how to involve the family in the

environment based on the needs presented through the disorder, how to involve the family in the continual learning process at home and provides examples of activ- ity planning and execution (Ministerio de Educación 2010).  Though the guide can be seen as generally helpful, it does have several and significant defi- ciencies. One being that some information pro- vided is conflicting and at times simply wrong, such as the description of Asperger’s Syndrome as a language disorder. Providing false

wrong, such as the description of Asperger’s Syndrome as a language disorder. Providing false informa- tion to a group of professionals who are not likely to receive any further education or training in the area can have limitless repercussions. The guide also gives the impression that intervention at 5 or 6 years of age can still be considered early, and does not emphasize the need for the earliest intervention possible in order to obtain the best outcome for the child (Ministerio de Educación

intervention possible in order to obtain the best outcome for the child (Ministerio de Educación 2010).  The second educator’s guide for all school levels also speaks in length about the history of the disorder, diagnostic criteria, and early alert indicators. It presents examples of the M-CHAT and ASSQ for educators’ use. The guide describes the specific early intervention methods of Lovaas and TEACCH. For school-aged children, the guide discusses the need for individual evaluation of each

TEACCH. For school-aged children, the guide discusses the need for individual evaluation of each child’s needs and gives general tips on supporting a child through their scholastic devel- opment. Subsequently, it describes specific char- acteristics of children with a diagnosis of Asperger’s Syndrome. Lastly, the guide describes the general abilities and impairments that young adults with Asperger’s Syndrome typically present in relation to their entrance into the University setting. It provides

Syndrome typically present in relation to their entrance into the University setting. It provides suggestions for teachers as well as administrators in how to best teach and provide support for individuals with Asperger’s Syndrome (Ministerio de Educación 2010). It is important to note, that in speaking with the author of the guide, she stated that the guide was commissioned as a demonstration of best practice by the Ministry of Education. However to her knowledge, the guide is not actually in

best practice by the Ministry of Education. However to her knowledge, the guide is not actually in significant use within the school system.  Ministry of Health The Ministry of Health has also published a guide for the clinical detection and diagnosis of ASD, for health-care professionals. All guide- lines follow international standard. Steps of early detection, diagnostic evaluation through multi- disciplinary teams, and therapeutic interventions are discussed. A multifaceted evaluation using

disciplinary teams, and therapeutic interventions are discussed. A multifaceted evaluation using standardized measures is recommended. Behav- ioral focused treatment options presented include ABA, PTR, and early intensive behav- ioral intervention. DIR, Floortime, and sensory integration are also discussed. Augmentative communication systems such as PECS, TEACCH, and TCC are presented, and the roles of various medical professionals in the treatment process are explained. Though this guide

roles of various medical professionals in the treatment process are explained. Though this guide presents a best practice model of detection, diagnosis, and treatment for ASD, its application in practice is virtually impossible in Chile due to the multiple hindering factors discussed previously. Based on state- ments from the four families interviewed and the four cases reviewed, in relation to their diag- nostic processes and experiences, it does not seem that the contents of this guild are

their diag- nostic processes and experiences, it does not seem that the contents of this guild are being taught to the professionals most likely to be involved in the lives of individuals with ASD and their families.  Social Policy and Training Autism profoundly affects individuals with the diagnosis, their families, and in turn societies. In reviewing the data collected for this chapter on Autism in Chile, it seems as if the knowledge to improve the lives of individuals with ASD and their

in Chile, it seems as if the knowledge to improve the lives of individuals with ASD and their families through correct early diagnosis, effective early intervention, and treatment as well as long- term support provision is available. It is the lack of implementation of this knowl- edge that prohibits thousands of individuals with ASD in Chile from receiving the quality and quantity of services needed to reach their full potential. Governments have an obligation to provide support to individuals

to reach their full potential. Governments have an obligation to provide support to individuals with ASD. In Chile, gov- ernmental interest and investment in all areas related to autism would be the first step to improv- ing the outcomes for all autistic individuals. Gov- ernment bodies must guarantee that all resources, including proper diagnosis, high quality treat- ment, and education are both financially and phys- ically accessible to all its citizens. This can be achieved through proper

financially and phys- ically accessible to all its citizens. This can be achieved through proper government investment. This can also be achieved through the regulation of private health sector and the services offered within the system.  The Ministry of Education must ensure that their educational professionals are trained in all aspects of autism and on how to provide students with ASD with the best education and care possi- ble. This would include training for all profes- sionals currently in

education and care possi- ble. This would include training for all profes- sionals currently in the field, as well as incorporating autism education and training into the curricula of all public and private educational institutions. Governments also have a responsibility in overseeing the education and training of its med- ical professionals, regardless in which capacity they practice or in which school of medicine they have trained. Professionals practicing in Chile need to be trained in the

school of medicine they have trained. Professionals practicing in Chile need to be trained in the variety of aspects of ASD, its differential diagnosis and treatment options. Diagnosis and treatment methods must be included in the curricula of all medical schools. This training is vital for primary care profes- sionals, who are typically the first professionals to come in contact with children who present with worrisome signs and symptoms of developmental delays and distortions. Initiatives for

present with worrisome signs and symptoms of developmental delays and distortions. Initiatives for early diag- nosis and intervention must be made a national medical priority. Correct early diagnosis and inter- vention also reduces the financial, emotional, and practical strains and burdens experienced by fam- ily members.  Governments through their Ministries of Health and Education must also take an active role in providing services to individuals with AS- D. These governmental bodies must

take an active role in providing services to individuals with AS- D. These governmental bodies must define a pro- tocol which would clearly delineate the path of “best care” through “best practice strategies.” They must train health, educational professionals, and parents about these strategies and enforce their implementation. Government interest is also needed to improve research in the area of autism in Chile. Without knowing the prevalence and the status of the disorder in a population, it

autism in Chile. Without knowing the prevalence and the status of the disorder in a population, it is difficult to develop effective strategies for prevention, inter- vention, long-term care, and positive outcomes that reflect the specific needs of the country and culture. In regards to service provision, it is important that all individuals have access to support and services throughout their lifespan: child, adoles- cence, and adulthood. This promotes personal development, better outcomes, and

child, adoles- cence, and adulthood. This promotes personal development, better outcomes, and alleviates some of the strain experienced by family members responsible for lifetime care. Each child diag- nosed with autism today will one day be an adult with autism. There is a great need in Chile for more vocational training and rehabilitation cen- ters throughout the country to accommodate the need of adults with ASD. Lastly, there is a great need for equalization of accessibility to quality care

of adults with ASD. Lastly, there is a great need for equalization of accessibility to quality care provision between the public and private sectors. Autism is a universal severe developmental disorder that is also present in Chile. The devel- opment of service provision for individuals with autism has sprung from the determination and self-reliance of parents and family members and in most cases it seems still greatly dependent on their resilience and fortitude. Currently, lack of interest,

it seems still greatly dependent on their resilience and fortitude. Currently, lack of interest, investment, and regulation by govern- ment bodies hinders the development of research and practice in the field, as well as access to quality medical care, treatment, and support ser- vices for many Chileans with ASD and their families.   Historical Background The history of autism in China is a brief one, as it was not diagnosed there until 1982 (Tao 1987). Since that point, the landscape of

brief one, as it was not diagnosed there until 1982 (Tao 1987). Since that point, the landscape of research and scholarly work pertaining to the epidemiology and clinical care of autism and related disorders has been relatively bare. Some of this can be attributed to the fact that dozens of dialects are spoken throughout the mainland, leading to a relative lack of appropriately translated materials relating to the diagnostic and treatment practices of autism (Ming 2013). This has left many doc-

relating to the diagnostic and treatment practices of autism (Ming 2013). This has left many doc- tors, teachers, and a majority of the general public with a lack of awareness and understanding of the disorder. China has a long history of special education schools, dating back to the early twentieth cen- tury and through the times of Mao Zedong (Deng et al. 2001). These institutions have been mostly geared toward those suffering from blindness and deafness, rather than those with intellectual

geared toward those suffering from blindness and deafness, rather than those with intellectual disabilities, however (Yang and Wang 1994). Consequently, programs and schools for those with autism have been much more difficult to come by.  Legal Issues, Mandates for Services Beginning in 1986, the Chinese Government began enacting a slew of legislation intending to benefit the disabled. The first landmark act was the China Compulsory Education Law, which aimed to require public schools to accept

act was the China Compulsory Education Law, which aimed to require public schools to accept children with special needs (Deng et al. 2001). This was followed in 1990 by the Law of the People’s Republic of China on the Protection of Persons with Disabilities, which called for additional pro- tections of Chinese individuals with disabilities under the law (McCabe 2007). Moreover, through its Ninth, Tenth, and Eleventh Five-Year Plans, the Chinese Government continued to outline ways in which to

Tenth, and Eleventh Five-Year Plans, the Chinese Government continued to outline ways in which to increase support for disabled children as well as improve their enrollment in schools (Ming 2013). Yet, although autism was first diagnosed in 1982, it was not officially included as a disability covered by Chinese law until 2006 (Gu 2007).  Despite these apparent attempts to increase support for those with autism and other disor- ders, the vague goals outlined in such legislation have yielded

those with autism and other disor- ders, the vague goals outlined in such legislation have yielded minimal results. Autistic children are still often refused an education from government-run public schools, including spe- cial education ones (Huang and Wheeler 2007). Public schools can cost almost half of a Chinese citizen’s average annual salary, while private schools often cost two to three times the average amount (Ming 2013). For children that live in rural areas, it can be incredibly

times the average amount (Ming 2013). For children that live in rural areas, it can be incredibly difficult to even find a school that offers the proper services (Wang et al. 2011). It is not uncommon for a special education school to admit an autistic child only to later declare that its teachers have an improper background in working with chil- dren with such conditions (Rubin 2000). Due to the shortcomings of China’s state-run programs and educational system, many families and autistic

the shortcomings of China’s state-run programs and educational system, many families and autistic individuals seek intervention from private organizations (McCabe 2004). Such treat- ment is paid for out of pocket by parents or fam- ilies (Gu 2007; McCabe 2007), which can become an obvious financial burden. The cost of such services in China is an issue for many families.  Overview of Current Treatments and Centers While Chinese public and private schools have fallen short for most autistic

Treatments and Centers While Chinese public and private schools have fallen short for most autistic children, a number of nongovernmental organizations have begun to emerge. One of the more notable examples is BARAC: the Beijing Association for the Rehabil- itation of Autistic Children (Feinstein 2010). Run completely off of fees and private donations, BARAC offers a hotline for parents of autistic children, publishes newsletters and journals to raise autism awareness, and oversees two schools

children, publishes newsletters and journals to raise autism awareness, and oversees two schools specifically for autistic children, each with over 100 students (Feinstein 2010). A number of sim- ilar centers now exist within China’s major cities, though very few exist in China’s rural areas and countryside. Many of these organizations have been started by the parents of autistic children who had difficulty finding services or getting an education elsewhere (McCabe 2007). In terms of the diagnosis

finding services or getting an education elsewhere (McCabe 2007). In terms of the diagnosis of autism within China, many doctors use the Chinese Classifica- tion of Mental Disorders, Third edition (CCMD- 3) (Wu and Zhang 2011). Professionals have argued that changes should be made to improve the accuracy and consistency of diagnoses of autism (Wu and Zhang 2011). Currently, very few internationally recognized clinical diagnostic tests, such as Autism Diagnostic Interview- Revised (ADI-R) and the

recognized clinical diagnostic tests, such as Autism Diagnostic Interview- Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS), are used by doc- tors (Wu and Zhang 2011).  Overview of Research Directions Research on autism in China has been very lim- ited, though the volume has been increasing as awareness has increased. Moreover, organiza- tions such as the Autism Consortium China are emerging and beginning to change the landscape of research within the nation (Wu and Zhang

are emerging and beginning to change the landscape of research within the nation (Wu and Zhang 2011). Launched in 2009 by a group of Chinese research scientists and doctors, the Autism Con- sortium China seeks to spread awareness of autism in Chinese society, help standardize and improve diagnostic procedures, and conduct extensive research on autism within China (Wu and Zhang 2011). While much of the research that has been conducted within China has focused on infantile autism, early interven-

the research that has been conducted within China has focused on infantile autism, early interven- tion, or special education, adults with autism have seemed to be an area that research has neglected.  Overview of Training Public schools often justify their rejection of autis- tic children by claiming that their teachers have no training in working with autism (Rubin 2000). Indeed, most instructors in schools and even at intervention programs specifically geared toward autistic children have

in schools and even at intervention programs specifically geared toward autistic children have little to no relevant training, mostly due to the small number of universities throughout the country that offer such a field of study (McCabe 2013). Many teachers even express a strong desire for more training, espe- cially relating to adolescent intervention (McCabe 2013). At times, passionate teachers with a will to help autistic children are bound by China’s limited awareness and lack of resources.

a will to help autistic children are bound by China’s limited awareness and lack of resources.  Social Policy and Current Controversies Autism, along with many other disabilities and illnesses such as ADHD, schizophrenia, and epilepsy, has been severely stigmatized in Chi- nese culture (Kelly 2007). There are some deeply rooted cultural explanations for such a social context. In the times of Confucius, the mentally and physically disabled were a part of the lowest social status (Deng et al.

the mentally and physically disabled were a part of the lowest social status (Deng et al. 2001). In Mainland China, many still refer to autism and other spectrum disorders as “gudu zheng” which translates to “lonely disease” (Feinstein 2010). Moreover, studies have suggested that families of autistic children have experienced increased levels of stress related to pessimism shame (Wang et al. 2011). This social context and intense stigmatization within Chinese cul- ture often incentivizes

2011). This social context and intense stigmatization within Chinese cul- ture often incentivizes families or individuals to hide one’s autism or disability rather than treat it. A large number of parents cut their disabled children off from outside social interaction, including schooling for this reason (Wang et al. 2011).  Chlorpromazine Maureen Early1, Craig A. Erickson1,2,3, Logan Wink2,3 and Christopher J. McDougle4,5 1Christian Sarkine Autism Treatment Center, Indianapolis, IN, USA

and Christopher J. McDougle4,5 1Christian Sarkine Autism Treatment Center, Indianapolis, IN, USA 2Department of Psychiatry, Indiana University School of Medicine, Indianapolis, IN, USA 3Department of Psychiatry, University of Cincinnati School of Medicine, Cincinnati, OH, USA 4Lurie Center for Autism, Massachusetts General Hospital, Lexington, MA, USA 5Nancy Lurie Marks Professorship in the Field of Autism, Harvard Medical School, Boston, MA, USA  Synonyms 3-(2-chloro-10

in the Field of Autism, Harvard Medical School, Boston, MA, USA  Synonyms 3-(2-chloro-10 H-phenothiazin-10-yl)-N, N-dimethylpropan-1-amine hydrochloride; Chlorpromazine hydrochloride; Thorazine  Definition Chlorpromazine is a prescription drug in the group of first-generation antipsychotics initially FDA-approved for medical use in the year 1957 whose active ingredients are chlorpromazine and chlorpromazine hydrochloride which have the chemical formulas C17H19N2SCl and C17H19N2SCl·HCl,

and chlorpromazine hydrochloride which have the chemical formulas C17H19N2SCl and C17H19N2SCl·HCl, respectively. This drug is cur- rently only available in generic form. This drug can be used for the treatment of schizophrenia, bipolar mania, some psychotic symptoms of dementia, and serotonin syndrome. Observed side effects include drowsiness/sedation, parkin- sonism, orthostatic hypertension, tachycardia, ECG abnormalities, anticholinergic effects, galac- torrhea, weight gain,

hypertension, tachycardia, ECG abnormalities, anticholinergic effects, galac- torrhea, weight gain, photosensitivity, rashes, and pigmentation.     Definition The cholinergic system utilizes acetylcholine (ACh) neurotransmission to regulate memory, arousal, concentration, attention, and conscious- ness (Sadock et al. 2009). ACh projects from the brainstem neurotransmitter center and basal fore- brain to numerous locations, including the pre- frontal cortex, basal forebrain, thalamus,

fore- brain to numerous locations, including the pre- frontal cortex, basal forebrain, thalamus, hypothalamus, amygdala, and hippocampus (Stahl 2008). ACh is formed from two precursors: choline, synthesized from the diet and intraneuronal sources, and acetyl coenzyme A (AcCoA), made from glucose in the neuronal mitochondria. The enzyme choline acetyltransferase acts on choline and AcCoA to create ACh. ACh acts on muscarinic and nicotinic cholin- ergic receptors. Muscarinic receptors are

create ACh. ACh acts on muscarinic and nicotinic cholin- ergic receptors. Muscarinic receptors are so-named due to their binding preference for mus- carine, a toxin found in poisonous mushrooms (Sadock et al. 2009). The five muscarinic recep- tors are M1, M2, M3, M4, and M5, and each has a different anatomical structure. They are G protein-linked and can be excitatory or inhibi- tory. The M1 subtype on the postsynaptic neuron is believed to regulate some memory functions. M1 receptors blocked by

on the postsynaptic neuron is believed to regulate some memory functions. M1 receptors blocked by antipsychotic medica- tions can induce sedation and some cognitive dysfunction. The presynaptic M2 receptor is an autoreceptor, detecting excess ACh in the synapse and preventing further release of ACh. M3 recep- tors in pancreatic beta cells cause insulin secretion, so antagonism here by atypical antipsychotics, like olanzapine and clozapine, can result in decreased insulin secretion.  Nicotinic

like olanzapine and clozapine, can result in decreased insulin secretion.  Nicotinic acetylcholine receptors (nAChR) belong to a class of excitatory, ligand-gated ion channel receptors (Sadock et al. 2009). They bind nicotine, the main addictive substance in tobacco smoke. These receptors have subtypes with vari- able affinities; the highest-affinity subunits are in the thalamus, followed by the substantia nigra, striatum, hippocampus, and entorhinal cortex. There are fewer high-density receptors

nigra, striatum, hippocampus, and entorhinal cortex. There are fewer high-density receptors in the cer- ebellar, parietal, and frontal cortices. One of the most notable subtypes is the postsynaptic alpha-4 beta-2 subunit, which is believed to regulate dopa- mine release in the nucleus accumbens (Stahl 2008). This is the likely target of tobacco nicotine in the brain, strongly contributing to tobacco’s addictive qualities. The alpha-7 subunit located on the postsynaptic neuron is thought to

tobacco’s addictive qualities. The alpha-7 subunit located on the postsynaptic neuron is thought to regulate cognitive function in the prefrontal cortex, whereas the presynaptic alpha-7 subunit on cho- linergic neurons provides positive feedback for continued release of ACh. The alpha-7 subunit of the nicotinic receptor located on dopamine and glutamate neurons also regulates the release of these neurotransmitters when ACh is present. The neurotransmitter ACh is partly regulated by two

of these neurotransmitters when ACh is present. The neurotransmitter ACh is partly regulated by two degradative enzymes, acetylcholinesterase (AChE) and butyrylcholinesterase (BuChE). These enzymes convert ACh back to choline, which is taken back up into the neuron for resynthesis into ACh (Stahl 2008). AChE is con- sidered the main enzyme that inactivates ACh. It is located throughout the brain, along the major projections as outlined above, as well as within the gastrointestinal (GI) tract,

along the major projections as outlined above, as well as within the gastrointestinal (GI) tract, skeletal muscle, red blood cells, lymphocytes, and platelets. The highest density of AChE is located in the caudate and putamen, with lower amounts in areas such as the thalamus, hippocampus, and cortices (frontal, temporal, parietal, occipital, and cerebellum). BuChE is also located throughout the brain, mostly in glial cells, but can also be found in the GI tract, plasma, skeletal muscle,

the brain, mostly in glial cells, but can also be found in the GI tract, plasma, skeletal muscle, placenta, and liver (Stahl 2008). ACh is partly regulated by cholinergic vesicular transporters (VAChT) on synaptic vesicles, which transport ACh into the vesicle (Sadock et al. 2009). The highest densities of VAChT are also located in the caudate and putamen, as well as the nucleus accumbens. Lower levels of binding occur in the cerebral cortex and cerebellum.  Anticholinergic medications are some

of binding occur in the cerebral cortex and cerebellum.  Anticholinergic medications are some of the most well-known medications to act on the cho- linergic system. They block the actions of ACh at either the muscarinic or nicotinic receptors, resulting in side effects such as sedation, analge- sia, and management of allergies (Sadock et al. 2009). These drugs impact numerous physiologi- cal systems, including the ocular, cardiovascular, respiratory, GI, genitourinary, and the central ner- vous

including the ocular, cardiovascular, respiratory, GI, genitourinary, and the central ner- vous system (CNS). In the CNS, these medica- tions may be initially stimulating, followed by a longer lasting sedative effect. Adverse effects include confusion, disorientation, hallucinations, and memory impairment. In the eye, anticholiner- gic agents cause paralysis of the ciliary muscle, leading to loss of accommodation, as well as muscarinic blockade of the iris’ sphincter muscle, causing pupillary

of accommodation, as well as muscarinic blockade of the iris’ sphincter muscle, causing pupillary dilation. Additional ocular effects include blurry vision, anhidrosis, and worsened narrow-angle glaucoma. In the cardio- vascular system, anticholinergic agents cause tachycardia due to muscarinic blockade of the parasympathetic fibers in the atria. In toxic doses, they can cause intraventricular conduction block. In the respiratory system, muscarinic blockade causes reduced glandular secretion of

block. In the respiratory system, muscarinic blockade causes reduced glandular secretion of the smooth muscle, leading to dry mouth. In the GI tract, inhibited parasympathetic control from anticholinergic blockade leads to decreased motil- ity, causing constipation, delayed gastric empty- ing, and paralytic ileus. In the genitourinary tract, anticholinergic agents relax the smooth muscle of the bladder and ureter, leading to urinary hesi- tancy, but they are also known to cause urinary

of the bladder and ureter, leading to urinary hesi- tancy, but they are also known to cause urinary retention. Despite their reputation for adverse effects, anticholinergic agents can be therapeuti- cally useful. They are commonly prescribed to prevent or improve extrapyramidal side effects (EPS) caused by dopamine antagonists. EPS reac- tions include dystonia, akathisia, and parkinson- ism. When antipsychotics block dopamine in the nigrostriatal tract, cholinergic activity is increased,

When antipsychotics block dopamine in the nigrostriatal tract, cholinergic activity is increased, resulting in the above-mentioned side effects. Anticholinergic agents reduce the increased cholinergic activity, restore balance to the dysfunctioning neurotransmitter system, and relieve symptoms of EPS.  From a pathophysiological standpoint, the cholinergic system is most frequently associated with Alzheimer’s disease (AD). In AD, there is degeneration of cholinergic neurons in the nucleus

with Alzheimer’s disease (AD). In AD, there is degeneration of cholinergic neurons in the nucleus basalis due to deposition of amyloid plaque, leading to memory loss (Sadock et al. 2009). AChE inhibitors prevent the destruction of ACh, which prevents further memory loss in AD. Some AChE inhibitors only inhibit AChE, whereas some inhibit both AChE and BuChE. Depending on the individual, responses to these agents vary, but the overall effect is prevention or slowing of disease progression (Stahl

to these agents vary, but the overall effect is prevention or slowing of disease progression (Stahl 2008). Examples of AChE inhibitors are donepezil, amantadine, rivastigmine, and galantamine. Another disease process implicated in the path- ophysiology of the cholinergic system is schizo- phrenia, as evidenced by the observation that antimuscarinic drugs improve negative symp- toms (Sadock et al.). Anticholinergic agents are known to worsen positive symptoms in patients with unstabilized

et al.). Anticholinergic agents are known to worsen positive symptoms in patients with unstabilized schizophrenia, but they appear to have no effect on positive symptoms in stabi- lized patients (Sadock et al.). The cholinergic system is also implicated in Parkinson’s disease (PD), which results from dopamine deficiency and cholinergic excess. Anticholinergic agents can help reduce parkinsonian tremor via musca- rinic receptor blockade, especially in combina- tion with levodopa, a first-line

tremor via musca- rinic receptor blockade, especially in combina- tion with levodopa, a first-line dopaminergic agent used to treat PD.  Historical Background ACh was the first neurotransmitter to be discov- ered. The first individual to uncover its existence was Henry Hallett Dale, a British pharmacologist who lived between 1875 and 1968 (Raju 1999). While studying ergot extracts, Dale found that the extracts reversed the effects of epinephrine and concluded that ergot contained tyramine, hista-

extracts reversed the effects of epinephrine and concluded that ergot contained tyramine, hista- mine, and ACh. In 1914, Dale determined that ACh was the “most suitable chemical” for para- sympathetic neurotransmission, and coined the terms “cholinergic” and “adrenergic.” Not long after his discovery, a German physician named Otto Loewi (1873–1961) was researching the autonomic nervous system when he discovered the presence of ACh and adrenaline in isolated hearts. The year was 1921, and Loewi

he discovered the presence of ACh and adrenaline in isolated hearts. The year was 1921, and Loewi was the first individual to underscore ACh’s importance in the nervous system. Loewi initially named ACh “vagusstoff,” referencing its release from the vagus nerve. These two men shared the Nobel Prize in Physiology and Medicine in 1936 “for discoveries related to chemical transmission of nerve impulse.”  Current Knowledge Impairment of the cholinergic system has been implicated in the

nerve impulse.”  Current Knowledge Impairment of the cholinergic system has been implicated in the pathophysiology of autism. Postmortem studies by Perry et al. (2001) show a 30% reduction of cortical muscarinic receptor binding in the parietal cortex in autistic individ- uals compared with age-matched controls. Cho- linergic neurons in the basal forebrain, an area thought to play a role in attention, are abnormally large and plentiful in children with autism (Baumann and Kemper 1994). A study

are abnormally large and plentiful in children with autism (Baumann and Kemper 1994). A study by Sokol et al. (2002) found low cytosolic choline concen- trations as measured by hydrogen proton mag- netic resonance spectroscopy in ten children with autism. Imaging studies have also attempted to link neuroanatomical regions of the brain to core domains of dysfunction observed in autism. Indi- viduals with autism have been noted to have sig- nificant deficits in face perception (Grelotti et al.

with autism have been noted to have sig- nificant deficits in face perception (Grelotti et al. 2002; Schultz 2005), which is believed to play a notable role in social interaction. The neuroana- tomical region linked to facial recognition is the fusiform gyrus, which contains the visual path- way. This pathway is regulated by the cholinergic system, suggesting a possible causal relationship between the cholinergic system and autistic social impairment. A study by Suzuki et al. (2011) used

between the cholinergic system and autistic social impairment. A study by Suzuki et al. (2011) used positron-emission tomography (PET) and a radio- tracer to examine AChE activity in 20 autistic adults compared to 20 age- and IQ-matched con- trols. The results showed a deficit in cholinergic innervations of the fusiform gyrus in the autistic subjects, suggesting a possible explanation for social impairment in autism.  There is evidence to suggest that specific cho- linergic receptor subtypes play

in autism.  There is evidence to suggest that specific cho- linergic receptor subtypes play a role in the pathology and symptomatology of autism. It is believed that deficits in alpha4-containing recep- tors predominate in autism (as well as in Alzheimer’s disease), whereas other receptor sub- types are associated with other disorders, like the alpha-7 subtype and schizophrenia (Graham et al. 2002). These observations may lead to drug development targeting specific nicotinic receptor subtypes for

These observations may lead to drug development targeting specific nicotinic receptor subtypes for alleviation of symptoms in autism. Similarly, a theory by Lippiello (2006) suggests that autism is a disorder of “overfocused atten- tion,” unlike attention-deficit/hyperactivity disor- der (ADHD), which can be described as a disorder of “underfocused attention.” These two disorders theoretically sit at opposite ends of a spectrum with reversed neurophysiological mechanisms underlying their

sit at opposite ends of a spectrum with reversed neurophysiological mechanisms underlying their pathophysiology. Lippiello hypothesizes that because nicotinic cholinergic agonists have been shown to improve the symp- toms of ADHD (Levin et al. 2001); perhaps nico- tinic cholinergic antagonists may ameliorate the symptoms of autism. The concept of nicotinic receptor antagonists treating autism has not yet been explored in the literature, but these concepts may lead to future initiatives in

has not yet been explored in the literature, but these concepts may lead to future initiatives in studying the rela- tionship between the anticholinergic system and autism.  Medications affecting the cholinergic system, particularly AChE inhibitors, have been studied to treat symptoms associated with autism. These agents increase ACh in brain regions related to attention and memory, such as the cerebral cortex and basal forebrain (Yoo et al. 2007). Amantadine is a drug approved for the

as the cerebral cortex and basal forebrain (Yoo et al. 2007). Amantadine is a drug approved for the prophylaxis of influenza A, but is commonly used in the treat- ment of PD and EPS due to its antiparkinsonian effects (Sadock et al. 2009). A double-blind, placebo-controlled study examined the effects of amantadine in 39 autistic children aged 5–19 years (King et al. 2001). The clinician- rated Aberrant Behavior Checklist rating scale (ABC) showed statistical significance in the amantadine-treated

Behavior Checklist rating scale (ABC) showed statistical significance in the amantadine-treated group within the domains of hyperactivity and inappropriate speech (Blakenship et al. 2011). The parent-rated ABC did not show statistically significant improvement between the amantadine and placebo groups. Galantamine, another AChE inhibitor, was exam- ined in 20 males with autism in a double-blind, placebo-controlled study (Niederhofer et al. 2002). Using the ABC as a dependent measure, there were

study (Niederhofer et al. 2002). Using the ABC as a dependent measure, there were decreases in the domains of irritability, hyperactivity, inadequate eye contact, and inap- propriate speech. Despite these promising obser- vations, studies examining the effect of other AChE inhibitors have found dissimilar results. A double-blind, placebo-controlled study by Handen et al. (2011) looked at the effect of donepezil in 34 children and adolescents aged 8–17 years (IQ > 75). The results showed some

of donepezil in 34 children and adolescents aged 8–17 years (IQ > 75). The results showed some improvement on a number of measures of execu- tive functioning, but there were no statistically significant differences between the donepezil and placebo groups. The researchers concluded that short-term treatment with donepezil may have limited impact on cognitive functioning in those with autism.  Retrospective and open-label trials are of lim- ited utility in demonstrating effectiveness and safety

and open-label trials are of lim- ited utility in demonstrating effectiveness and safety of a medication due to their lack of exper- imental design, but they offer a glimpse of pos- sible directions that can be taken in the treatment of symptoms associated with autism. A retrospective study by Hardan and Handen (2002) examined the effects of donepezil, an AChE inhibitor, in the treatment of 8 children with autism, aged 7–19 years. The study found a significant decrease in irritability and

8 children with autism, aged 7–19 years. The study found a significant decrease in irritability and hyperac- tivity according to the ABC, although attention and memory were not measured. An open-label study by Nicolson et al. (2006) examined the effects of galantamine, an AChE inhibitor and nicotine receptor modulator, in the treatment of 13 children with autism. Galantamine demon- strated reductions in parent-rated irritability and social withdrawal on the ABC, improvements in emotional

reductions in parent-rated irritability and social withdrawal on the ABC, improvements in emotional lability and inattention on the Conners’ Parent Rating Scales-Revised, and reduced anger on the clinician-rated children’s Psychiatric Rating Scale. Hertzman (2003) reported three cases where galantamine pro- moted verbalization in adults with autism. Another open-label study by Chez et al. (2004) examined the AChE inhibitor rivastigmine tar- trate and found significant improvements in scores of

examined the AChE inhibitor rivastigmine tar- trate and found significant improvements in scores of various measurements, including the Childhood Autism Rating Scale, Gardner’s Expressive One-Word Picture Vocabulary Test, and Conners’ Parent Rating Scale.  Future Directions Future directions for research into the relationship between the cholinergic system and autism will likely involve investigating cholinergic receptor subtypes, neuroimaging, and pharmacologic treat- ment development.

cholinergic receptor subtypes, neuroimaging, and pharmacologic treat- ment development. Cholinergic receptor subtypes occur at variable concentrations in the brain and are implicated in the pathophysiology of autism. Exploring their influence on attention, memory, and cognition, as well as the core diagnostic domain of social impairment, will likely be a continued area of research. Neuroimaging of these receptors will continue to map areas of neu- roanatomical dysfunction in autism. Medications

these receptors will continue to map areas of neu- roanatomical dysfunction in autism. Medications affecting the cholinergic system could be further explored as treatments for autism given the mixed results seen in existing studies. Double-blind, placebo-controlled trials are required to draw con- clusions about medication safety and efficacy, and currently there are minimal studies examining the effectiveness of AChE inhibitors. Short-term studies of AChE inhibitors have shown mixed results, so

of AChE inhibitors. Short-term studies of AChE inhibitors have shown mixed results, so it may be of benefit to employ them for longer periods before drawing definitive con- clusions about their efficacy. Lastly, the study of nicotinic cholinergic receptor antagonists as a treatment for autism is another possible, untapped direction.  See Also ▶Amantadine ▶Anticholinergic ▶Antipsychotics: Drugs ▶Atypical Antipsychotics ▶Dopamine  Historically, specialists in the field of education state that

▶Atypical Antipsychotics ▶Dopamine  Historically, specialists in the field of education state that classroom management encourages the establishment of student self-control through positive achievement and behavior. Classroom management is closely linked to issues of motivation, establishing a climate of respect between classroom staff and students and also consistent discipline. The teacher is at a huge advantage when she or he spends the time to set up classroom management that looks at

is at a huge advantage when she or he spends the time to set up classroom management that looks at content management (skills that cut across subjects and activities; cf. instructional management skills, sequencing and integrating additional instructional activities, as well as instruction-related discipline problems [Kounin as cited in Froyen and Iverson 1999, p. 128]), conduct management (inclusion of human diversity into one’s instructional philosophy), and covenant management (classroom

of human diversity into one’s instructional philosophy), and covenant management (classroom group and social systems). Research demonstrates that a high incidence of disciplinary problems in the classroom results in a significant impact on effectiveness of teaching and learning. Additional research indicates that strong consistent management and organizational skills lead to fewer classroom discipline problems (Johansen et al. (2011), www.intime.uni.edu/model/teacher/teac3summary.html).

discipline problems (Johansen et al. (2011), www.intime.uni.edu/model/teacher/teac3summary.html). Throughout the years, classroom management has created areas of debate among teachers; however, it is widely recognized that a key component of classroom management is the application and implementation of behavioral approaches. Sulzer-Azaroff (1981 in Bijou and Ruiz, p. 64) stated the use of behavior modification in the classroom parallels the development of behavior modification in the field of

modification in the classroom parallels the development of behavior modification in the field of mental health. The majority of early studies conducted in the 1960s focused on the reduction of disruptive behaviors by changing teacher behavior; however, this early application of behavior principles did not teach the students an alternative behavior. Careful consideration of research shared by Birnbrauer et al. (1965), Brigham and Sherman (1968), and Buell, Stoddard, Harris, and Baer (1968) yielded

et al. (1965), Brigham and Sherman (1968), and Buell, Stoddard, Harris, and Baer (1968) yielded the need to focus on using behavioral procedures to teach students in a way that classroom productivity, language development, and social skills were promoted (Sulzer-Azaroff 1981 in Bijou and Ruiz 1981, pp. 65–67). Subsequent research has contributed to a growing body of research that supports positive classroom management through the use of modeling behavior expectations and differential

positive classroom management through the use of modeling behavior expectations and differential reinforcement procedures (Sulzer-Azaroff and Mayer 1986). Throughout the years, this research has become more refined and focused on a variety of needs that are represented in the learning characteristics of students with autism spectrum disorders (ASD).

The current trends in education emphasize the establishment of positive behavior supports (PBS) and the use of positive behavioral interventions and supports (PBIS) to achieve socially important change (Sugai et al. 2000). The application of positive behavior supports (PBS) and positive behavioral interventions and supports (PBIS) is supported by the US Department of Education and Office of Special Education Programs (OSEP), with an emphasis for schools to use the PBIS framework to impact

Special Education Programs (OSEP), with an emphasis for schools to use the PBIS framework to impact social, academic, and emotional outcomes for students with disabilities (https://www.pbis.org). Although the use of such systems is best practice, students with ASD present unique characteristics within a learning environment. The teacher is challenged to incorporate these unique learning needs into meaningful classroom management and instruction. To do this, the teacher must take into account

meaningful classroom management and instruction. To do this, the teacher must take into account the needs of the learner in a variety of educational settings. These settings necessitate careful thought about physical structure, instructional management, the student’s ability in the areas of communication and social skills and the need to teach the student how to learn under a variety of conditions.

Classroom management for the student with ASD should include consideration of the following aspects of instruction: 1. Physical space in the classroom needs to be set up with clearly defined areas

(misperceptions, misattributions, all-or-nothing thinking, etc.) lead to inappropriate emotional reactions, behaviors, or both. The underlying model is often referred to as a cognitive appraisal theory of emotion (cf. Lazarus 1991); the idea being that thought in its various forms drives emotion and behavior. A key therapeutic technique in the early cognitive therapies was the use of logic to identify and challenge faulty thought processes. The assumption was that irrational thoughts would be

and challenge faulty thought processes. The assumption was that irrational thoughts would be “replaced” with more rational ones, leading to improved emotional states and behavioral responses. Indeed, early research on cognitive therapies offered evidence of good treatment response in terms of symptom reduction, particularly with regard to emotion disorders such as anxiety and depression (Beck 1970; Watkins 1975). Relatively little cognitive therapy research was conducted with individuals on the

Watkins 1975). Relatively little cognitive therapy research was conducted with individuals on the autism spectrum in this early period. As the cognitive and behavioral traditions merged into integrative CBT packages, core methods used to achieve symptom remission emerged: psychoeducation (learning about the nature of one’s mental health condition), Socratic questioning and collaborative discussions to build up awareness of thought and emotion and to teach thought- and behavior-based coping

to build up awareness of thought and emotion and to teach thought- and behavior-based coping skills, and behavioral experimentation, in which alternative responses to challenging situations are attempted in real-world settings and then reflected upon in structured discussions in order to build up potent memories of adaptive patterns of thought and behavior for future use in similar (not necessarily identical) situations (e.g., Brewin 2006). At present, there is increasing interest in the

identical) situations (e.g., Brewin 2006). At present, there is increasing interest in the application of CBT to individuals with ASD, as described below.

Rationale or Underlying Theory With the increasing fund of knowledge emanating from cognitive science research in recent decades, a number of critical findings were published that helped refine the model of mental states in cognitive psychology (see, e.g., Anderson et al. (2004) model of the architecture of the mind). A generally accepted view from the modern literature is that long-term memories can be nearly indelible and that it is common to have multiple, competing memory representations

can be nearly indelible and that it is common to have multiple, competing memory representations (schemata) of the same event or concept (Brewin 2006). Hence, rather than “replacing” maladaptive thoughts with adaptive ones, it is more likely that new adaptive thoughts can be learned and strengthened using certain memory enhancement techniques, and, under certain conditions, these new memories can partially or fully suppress older maladaptive memories. Promoting such learning is, in fact, a

can partially or fully suppress older maladaptive memories. Promoting such learning is, in fact, a fundamental goal of contemporary cognitive therapy (e.g., Brewin 2006). Nonetheless, the older maladaptive memories are likely still accessible and can return to consciousness under certain conditions (e.g., Rodriguez et al. 1999) underscoring the “indelibility” of many memories and the challenge facing therapists endeavoring to help individuals cope more effectively and employ more useful skills

therapists endeavoring to help individuals cope more effectively and employ more useful skills under varied conditions. These properties of human memory have led cognitive therapists to a memory retrieval competition model of therapy that endeavors to enhance recall of beliefs and skills under challenging conditions that promote adaptive responses (Brewin 2006).

Although cognitive and behavioral therapies were developed in parallel in the middle of the twentieth century, cognitive therapy had behavioral elements right from the beginning. For example, clients were encouraged to challenge their negative views about specific situations by engaging in “behavioral experimentation” and testing these situations out in person (e.g., initiating a brief conversation with others in a social group in which one feels like an outsider to test whether one will be

with others in a social group in which one feels like an outsider to test whether one will be rejected). Although such strategies involve behavioral change, the goal is not specifically to develop a new response linked with a given condition (e.g., a behavioral view of clinical change) but rather to acquire new information that can promote adaptive beliefs about the situation that, with sufficient rehearsal, can occlude the current unrealistic, negative perceptions of the situation and therefore

rehearsal, can occlude the current unrealistic, negative perceptions of the situation and therefore change behavior.

Although behaviorism and the cognitive science perspective emphasize different aspects of human learning and memory in the service of behavioral change, the two approaches are not necessarily at odds. The extreme view of radical behaviorism, rejecting the importance of mental states, is not commonly practiced in modern psychology, even among those who subscribe to behaviorism as a primary explanatory and clinical tool. Fundamentally, learning via association and learning via higher cognitive

and clinical tool. Fundamentally, learning via association and learning via higher cognitive processes (e.g., conceptual reasoning) are complementary and may occur either in serial or in parallel in any given learning situation. Cognitive behavioral therapy, accepting this affinity between the behavioral and cognitive perspectives, sought to capitalize on all effective means of human learning – tailored to the cognitive and developmental level of a given population – to promote clinical change.

to the cognitive and developmental level of a given population – to promote clinical change. As a result, often multiple treatment techniques spanning both associationist and cognitivist approaches to clinical change are combined into CBT treatment “packages” that layer multiple forms of learning together. Examples are CBT programs for anxiety disorders that involve a number of thought-based approaches to change (e.g., cognitive restructuring; mindful awareness) married together with

approaches to change (e.g., cognitive restructuring; mindful awareness) married together with associationist approaches such as gradual exposure to feared stimuli and self-reward (e.g., Kendall 1994) and CBT programs for depression, which combine identifying and challenging “erroneous” ways of thinking (e.g., all-or-nothing thinking) with behavioral techniques like self-modeling and pleasant activity scheduling (e.g., Weisz et al. 1999). These two basic modalities of learning are thought to

scheduling (e.g., Weisz et al. 1999). These two basic modalities of learning are thought to complement one another and promote more comprehensive formation of adaptive memories.

Goals and Objectives CBT is intended to treat a wide variety of mental health and developmental disorders, although the target population is expected to have some capacity to communicate and, thus, benefit from mainline cognitive techniques (in contrast, many purely behavioral therapies do not assume substantial functional communication, particularly those used in the treatment of ASD). Historically, the most common targets of treatment for CBT have been mood and anxiety disorders (including

the most common targets of treatment for CBT have been mood and anxiety disorders (including obsessive-compulsive disorder; OCD), with high levels of evidence for treatment efficacy in both conditions (Butler et al. 2006; James et al. 2005). There are CBT-based programs for many other conditions as well, with somewhat more tentative levels of support due to either a lack of large, rigorous studies or mixed results. Disruptive behavior disorders, habit disorders, substance use disorders,

studies or mixed results. Disruptive behavior disorders, habit disorders, substance use disorders, psychotic disorders, and personality disorders are among the other conditions commonly treated with CBT. Autism spectrum disorders have also been the target of some recent CBT programs. Most of these latter programs have focused on associated symptoms (e.g., anxiety) in individuals with ASD (e.g., Sofronoff et al. 2005); several have targeted core autism symptoms (e.g., social engagement) as well

et al. 2005); several have targeted core autism symptoms (e.g., social engagement) as well (e.g., Wood et al. 2009a).

As noted in the section on rationale, contemporary CBT aims to build up the strength of memory for adaptive responses – thoughts, emotions, and behaviors – when individuals are in challenging situations that typically elicit maladaptive responses. Here are some examples of maladaptive responses of various types, particularly those that are commonly seen in ASD (see, e.g., case studies presented in Sze and Wood 2007, 2008; Lehmkuhl et al. 2008):

*   The belief that others are scrutinizing one’s every move (leading to anxiety, dysfluency, tentativeness, and reticence)
*   A belief that life is not worthwhile because it is full of challenges (leading to sadness or irritability, retreat into comforting but solitary activities like electronics, or self-harm)

*   The belief that nothing short of perfect is good enough, so why try if that is not attainable (leading to avoidance of specific tasks viewed in this light and, often, conflict and anger stemming from social pressure to make an effort anyway)

*   The belief that rules are inviolable and absolute (leading to behaviors such as tattletaling as well as the sadness that often ensues after experiencing rejection from others regarding this behavior or telling on oneself as often seen in pediatric OCD and the anxiety that accompanies that behavior)

*   An individual’s belief that others are uninterested in talking or playing with him/her because they have not always responded positively to the individual’s ideas in the past (leading to anxiety and social avoidance)

*   A corresponding belief that playing with others is mostly about getting to choose the game and set the rules, winning, and having the longest possible turn, rather than enjoying an activity together and the sociability that goes with it (leading to egocentric, self-oriented behavior, poor sportsmanship, and, often, ultimately sadness at the negative social feedback that can ensue)

With regard to these types of maladaptive responses, CBT aims to help individuals challenge faulty assumptions by using logic, evidence, and direct observation to arrive at more realistic conclusions and alter behavior accordingly. With the adoption of realistic beliefs and corresponding behaviors often comes emotional relief. For example, in response to anxious beliefs about being scrutinized by others, many CBT programs would encourage an individual to challenge these beliefs by using logic

others, many CBT programs would encourage an individual to challenge these beliefs by using logic and simple behavioral experiments (e.g., tripping on purpose in public or other “mistakes” to test what types of reactions one receives) to foster new attitudes (e.g., “people really do not care about a lot of minor mistakes you might make, and as for big ones, it is their problem if they laugh at you, not yours”) and corresponding behaviors (e.g., taking more risks in public) (e.g., Kendall 1994).

not yours”) and corresponding behaviors (e.g., taking more risks in public) (e.g., Kendall 1994). Improvement in emotional states is expected to follow successful acquisition of these kinds of adaptive beliefs and behaviors. Some forms of CBT also involve adopting a disengaged attitude with regard to one’s negative emotions – an approach that aims to change cognitive appraisal of emotion to reduce the intensity and aversiveness of states such as sadness, anxiety, and perseverative thought (Ost

the intensity and aversiveness of states such as sadness, anxiety, and perseverative thought (Ost 2008).

A fundamental difference between CBT and strictly behavioral treatments (e.g., operant or classical conditioning-based models) is the conceptualization of mechanisms of change and complementary intervention techniques. While purely behavioral interventions assume that largely automatic (and unobservable) learning processes (e.g., extinction, associative learning, modeling) promote behavioral change and symptom remission, CBT-based models seek to promote changes in thinking and volitional

change and symptom remission, CBT-based models seek to promote changes in thinking and volitional behavior (e.g., identifying and challenging maladaptive interpretations of social situations) that are adaptable to multiple situational contexts. A simple example of phobia treatment illustrates differences between CBT and purely behavioral approaches: in the former, catastrophic beliefs about a feared stimulus would be identified and challenged to build up to facing the phobic stimulus, and after

stimulus would be identified and challenged to build up to facing the phobic stimulus, and after habituation occurs, the therapy would promote the development of principles for thinking about the feared stimulus differently to build a benign memory schema of the stimulus that could compete with and suppress the fearful schema that the patient had prior to treatment (e.g., Wood and McLeod 2008). In contrast, a purely behavioral approach would involve gradual exposure to a feared stimulus to

In contrast, a purely behavioral approach would involve gradual exposure to a feared stimulus to achieve extinction of the conditioned (fearful) response with no emphasis on related thoughts, and when fear and avoidance were eliminated in one setting, the procedure might be repeated in several other settings in an effort to achieve generalization. Clearly, the putative learning processes and corresponding techniques used to promote change differ significantly in these two types of treatments

techniques used to promote change differ significantly in these two types of treatments (further description of CBT technique is given below).

Treatment Participants CBT has been found efficacious across a wide range of populations, particularly in neurotypical groups. Typical pediatric and adult populations affected by depression, anxiety, and other psychiatric conditions have shown good treatment response with few limitations (Norton and Price 2007; Weisz et al. 2006; In-Albon and Schneider 2007). Although numerous studies of predictors of treatment response have been conducted, few consistent trends have emerged. The method of

of treatment response have been conducted, few consistent trends have emerged. The method of delivery is undoubtedly influential, however. The younger the children are, the more likely they are going to need parent involvement. Children with ASD also appear to do better with parent involvement than with child-only CBT (Sofronoff et al. 2005; Puleo and Kendall 2011). No reliable differences have been found with regard to gender or comorbidity. It is assumed that greater intellectual ability

been found with regard to gender or comorbidity. It is assumed that greater intellectual ability should promote greater understanding of the cognitive therapy aspects of treatment, all other things being equal, but this has not been studied carefully. Furthermore, appropriate modifications of treatment for individuals with intellectual disabilities may make CBT accessible and comparable in effectiveness across a wide range of intellectual functioning (Suveg et al. 2006).

Treatment Procedures CBT is generally presented in an interactive tutorial format, with a lesson plan, some form of instruction, practice, and review. Although it is relatively structured, CBT is responsive to client characteristics, interests, and level of engagement. Forming a positive alliance with the client is an ongoing goal in CBT to enhance the client’s motivation to learn and use skills (e.g., Chiu et al. 2009). CBT for mood- and anxiety-related problems typically involves teaching

(e.g., Chiu et al. 2009). CBT for mood- and anxiety-related problems typically involves teaching cognitive and behavioral skills followed by a skills practice phase in simulated and “real-world” situations (e.g., Kendall 1994). In one of the more influential clinical trials of CBT for pediatric anxiety disorders in typically developing youth, Kendall et al. (1997) found that the cognitive intervention aspects of the treatment (e.g., challenging irrational beliefs) alone were not effective in

aspects of the treatment (e.g., challenging irrational beliefs) alone were not effective in reducing children’s anxiety levels. Only when cognitive training was paired with in vivo exposure elements (facing fears rather than avoiding them) did CBT become an efficacious intervention. For individuals with ASD and concurrent anxiety, the general CBT approach of challenging irrational fearful beliefs and developing rational beliefs is employed, although other elements of treatment have varied widely

developing rational beliefs is employed, although other elements of treatment have varied widely from program to program. In these programs for individuals with ASD, there has been wide variation with regard to the emphasis placed on in vivo exposure relative to other treatment elements (e.g., cartooning, role-playing). At the extremes of the continuum, the Wood et al. (2009b) program involves in vivo exposure at home on a daily basis for the majority of the 16-session treatment, which spans

in vivo exposure at home on a daily basis for the majority of the 16-session treatment, which spans 4–5 months for most youth; whereas the Sofronoff et al. (2005) 6-session treatment focuses on a series of creative anxiety management skills tailored for youth with ASD, but with no explicit in vivo exposure elements. Some (but not all) CBT trials conducted with typically developing children and youth with anxiety disorders (e.g., Barrett et al. 1996; Barrett 1998; Wood et al. 2006) have found

youth with anxiety disorders (e.g., Barrett et al. 1996; Barrett 1998; Wood et al. 2006) have found that including parent training in the intervention leads to superior intervention effects as compared to exclusively child-focused treatments. Many of the group design studies for youth with ASD and high anxiety have included concurrent child- and parent-intervention components.

The majority of the treatment programs that have been studied for individuals with ASD have used a group-therapy treatment format with a structured sequence of sessions for all participants. Others have used an individual therapy format with modular design (see Chorpita et al. 2004) in which individual treatment components were selected by the therapist and supervisor on a session-by-session basis using a clinical algorithm matching the client’s presenting characteristics with corresponding

using a clinical algorithm matching the client’s presenting characteristics with corresponding treatment elements (e.g., Wood et al. 2009a, 2009b). As an example, a child who was socially anxious at school would receive a social coaching module in which social approach behaviors are broken down into steps, anxious beliefs about each step are discussed and challenged, and then steps are practiced in various real-world settings such as parks and school playgrounds repeatedly until a sufficiently

in various real-world settings such as parks and school playgrounds repeatedly until a sufficiently advanced level of the skill (e.g., joining recess games without fear) is evidenced consistently. No clinical trials thus far have compared the relative efficacy of structured group-format CBT interventions with individually administered, modularized interventions of this kind.

Anger and aggression have been the target of some CBT programs, particularly in neurotypical youth (e.g., Kazdin 2005). In a randomized controlled trial conducted by Sofronoff et al. (2007), a CBT program was devised to address anger problems in youth with ASD. Treatment consisted of six weekly 2-h sessions for both child and parent. The manualized therapy sessions focused on exploring positive and negative emotions, cognitions related to coping with anger, social stories to promote emotion

and negative emotions, cognitions related to coping with anger, social stories to promote emotion management, and designing individualized coping plans for anger management.

With regard to treatments for ASD symptoms – such as social deficits – only a few programs have been developed within a CBT framework. Bauminger (2002) developed a school-based CBT program, noting that maladaptive cognition accounts for some of the interpersonal behavior in youth with ASD and that, therefore, adaptive alterations to cognitive structures could make a positive impact on interpersonal behavior. In the Bauminger (2002) intervention, several elements are notable: children’s

behavior. In the Bauminger (2002) intervention, several elements are notable: children’s classroom teachers are responsible for a 3-h-per-week, 7-month intervention conducted at school that relies heavily on guiding a dyad consisting of the target child and a typically developing peer through a series of 13 social skill lessons (e.g., cooperating) that are to be practiced at recess, on the phone, on playdates, and so forth. Parents are also asked to support children in learning and implementing

on playdates, and so forth. Parents are also asked to support children in learning and implementing these social skills. The intervention was presented by the teacher to the dyad, allowing for individualization (e.g., by having pairs of children choose activities that they both liked). The Wood et al. (2009a, b) program, described above, also addresses social and repetitive symptoms of ASD, integrating these target symptoms into the treatment hierarchy with emotion-related symptoms.

Efficacy Information CBT treatments for anxiety in ASD have been generally successful. Sofronoff et al. (2005) evaluated two variants of a 6-week CBT program for anxiety in youth with ASD in group-therapy format. Parent-report measures showed declines in child anxiety symptoms in the CBT groups as compared to a wait list group. Similarly, in 12- and 16-week group-therapy CBT interventions for comorbid anxiety and ASD in children, Chalfant et al. (2007) found that anxiety outcomes were superior

anxiety and ASD in children, Chalfant et al. (2007) found that anxiety outcomes were superior for the immediate treatment group relative to the wait list arm. However, limitations of these studies were that the study therapists, rather than independent evaluators blind to treatment assignment, administered the posttreatment diagnostic interviews and that treatment fidelity was not assessed. Reaven et al. (2009) studied 33 children (aged 8–14 years) with ASD and comorbid anxiety disorders and,

et al. (2009) studied 33 children (aged 8–14 years) with ASD and comorbid anxiety disorders and, using a nonrandomized assignment paradigm, assigned them to immediate treatment in group-therapy format CBT or a wait list. Outcome measures were child- and parent-reported anxiety symptoms using psychometrically sound questionnaires. Youth in the immediate treatment group improved more than the waiting list group on parent-reported symptoms, but not child-reported symptoms. This may have been

waiting list group on parent-reported symptoms, but not child-reported symptoms. This may have been attributable to low pretreatment child-report symptom scores.

White et al. (2009) examined a manualized 11-week CBT program for the treatment of anxiety in four youth aged 12–17 years with high-functioning ASD. The program consisted of individualized therapy sessions with high levels of parent involvement and group-therapy sessions mainly for the teaching and practicing of social skills. At posttreatment, three of the four adolescents no longer met diagnostic criteria for their targeted anxiety disorder and showed significant reductions in anxiety based

criteria for their targeted anxiety disorder and showed significant reductions in anxiety based on parent report. In a study of a manualized, individualized CBT program, 40 children aged 7–11 years were randomized to either 16 sessions of CBT or a wait list (Wood et al. 2009b). Participating children had an average of 4.18 psychiatric disorders at intake. Despite the high level of comorbidity, children randomized to CBT had primary outcomes comparable to those of other studies treating childhood

randomized to CBT had primary outcomes comparable to those of other studies treating childhood anxiety in typically developing patients (see, e.g., Barrett et al. 1996; Wood et al. 2006), with large effect sizes for most outcome measures; remission of all anxiety disorders for over half of the children by posttreatment or follow-up; and a high rate of positive treatment response on the Clinical Global Impressions–Improvement scale (CGI-I) (78.5% from intent-to-treat analyses). As with the

Global Impressions–Improvement scale (CGI-I) (78.5% from intent-to-treat analyses). As with the Reaven et al. (2009) study, child-reported anxiety did not differ significantly from pretreatment to follow-up; however, a floor effect was expected, as baseline levels were low and decreased with treatment.

In the Wood et al. (2009a) CBT intervention (N ¼ 19), there was also a statistically significant difference between the CBT group and the wait list group at posttreatment/post-wait-list on total parent-reported autism symptoms on the Social Responsiveness Scale, with a medium to large effect size. Treatment gains were maintained at 3-month follow-up. Of course, this study was limited by a small sample and reliance on parent reports of symptomatology, which are vulnerable to bias. Evidence-based

and reliance on parent reports of symptomatology, which are vulnerable to bias. Evidence-based assessments of core autism symptoms based on independent evaluators’ ratings and direct observations of children’s behavior (e.g., the ADOS) should be employed in future studies of CBT programs like this one to determine their potential for reducing the expression and severity of core autism symptoms.

In the Sofronoff et al. (2007) anger management CBT program, there was a significant reduction in the number of parent-reported anger episodes after treatment in the immediate intervention group, with gains maintained 6 weeks after treatment completion. Qualitative interviews conducted with participants’ teachers posttreatment revealed participants’ use of strategies they had learned through the program to manage their anger within their classroom. One methodological weakness in this study was

program to manage their anger within their classroom. One methodological weakness in this study was that no diagnostic criteria or operational definition of an externalizing disorder was used for case selection at pretreatment. In addition, all outcome measures were parent-report, with the exception of the qualitative interviews with teachers.

In the Bauminger (2002, 2007a) individual interventions for social deficits in ASD, a pre-post design without control group was used, and children approximately doubled their number of observed positive social interchanges with peers in naturalistic observations at school – particularly eye contact, expressions of interest in others, and talking about their own experiences. They were more likely to initiate positive interactions than they were to respond positively to peers’ initiations to

to initiate positive interactions than they were to respond positively to peers’ initiations to them. Teachers also rated children as improved in certain positive social skills on the Social Skills Rating Scale. A 4-month follow-up assessment provided evidence of maintenance of treatment effects (Bauminger 2007a). This treatment model is promising and merits a more thorough evaluation in a randomized trial.

A group-therapy CBT treatment (with 3–6 children per group, at least half of whom were typically developing) with many commonalities with the Bauminger (2002) intervention, but focusing more on within-group interaction as a vehicle for learning, was also evaluated by Bauminger (2007b). Again, an AB design was used (N ¼ 26). While there was substantial improvement in social behaviors among the therapy group members while interacting during the sessions from pre- to posttreatment, this effect

therapy group members while interacting during the sessions from pre- to posttreatment, this effect did not generalize to the playground setting, in which no significant improvement was found in social behaviors over the course of the 7-month interval from baseline to posttreatment. Since Bauminger essentially adapted the therapeutic concepts and methods from her more individually oriented CBT interventions (Bauminger 2002, Bauminger 2007a) for this group-therapy trial, it is worth considering

(Bauminger 2002, Bauminger 2007a) for this group-therapy trial, it is worth considering whether there is more merit in individually oriented social interventions in autism (if, as Bauminger notes, the child’s ecological influences are addressed through the individual intervention), as compared to group-based interventions, than has traditionally been assumed.

Outcome Measurement In defining desirable study features for research intended to establish efficacious treatments, Chambless and Hollon (1998) noted that it was important that valid and reliable measures of symptom counts or diagnostic status, preferably including those rated by an evaluator blind to treatment status and study hypotheses, be used as primary outcome measures. Of the small number of controlled trials of CBT for individuals with ASD, most have included this kind of measure. Many

of controlled trials of CBT for individuals with ASD, most have included this kind of measure. Many of these have focused on comorbid mental health features such as anxiety (e.g., Chalfant et al. 2007), and one of these trials utilized a parent-rated measure of core autism symptoms that is norm-referenced and used in the diagnosis of ASD (Wood et al. 2009a). The Bauminger studies also used observational measures in the school setting, an objective measure with high ecological validity. Many of

measures in the school setting, an objective measure with high ecological validity. Many of the studies of CBT in ASD have also used parent-, teacher-, or self-report, which are useful as secondary indices of treatment outcome but may be biased by expectancy effects and other sequelae of being unblinded.

Qualifications of Treatment Providers Practitioners are generally licensed clinical psychologists with a doctoral degree in psychology. However, other professionals with licensure to provide psychotherapy to children (e.g., school psychologists, licensed clinical social workers, child and family therapists) with appropriate training can conduct CBT treatments. Regardless of specific license and degree, a specialization in individuals with ASD and specific training (including one-on-one

and degree, a specialization in individuals with ASD and specific training (including one-on-one supervision) in CBT for individuals with ASD are essential qualifications for the professional delivery of this type of treatment.

Cognitive Behavioral Therapy (CBT) and ASD  Definition Cognitive behavioral therapy (CBT) is an evidence-based psychosocial practice for the treatment and primary prevention of anxiety in typically developing children, adolescents, and adults (Chorpita 2007). Recently, different formats of CBT programs have been adapted and used for the treatment of anxiety in children with autism spectrum disorder (ASD). The main purpose of CBT is to help individuals identify and replace negative and

disorder (ASD). The main purpose of CBT is to help individuals identify and replace negative and unrealistic thoughts with more meaningful positive thoughts, so as to treat both emotional and behavioral problems (Ellis 1962; Beck 1963). CBT programs include a number of cognitive and behavioral problem-solving and coping strategies to enable individuals to identify the contexts, conditions, or precursors that lead to anxiety and then self-manage the symptoms when they appear. Structured manual

that lead to anxiety and then self-manage the symptoms when they appear. Structured manual and modular CBT intervention programs have been implemented in both individual and group formats for varying lengths of time in mental health settings (Perihan et al. 2019). Structured manualized programs include specific sessions for the targeted group. Examples of structured manualized CBT programs are Coping Cat (Kendall and Hedtke 2006) and Skills for Academic and Social Success (Warner et al. 2007). A

Cat (Kendall and Hedtke 2006) and Skills for Academic and Social Success (Warner et al. 2007). A limitation of the structured manualized programs relevant to ASD is that the manualized approach may not have the flexibility necessary to customize interventions based on the needs of an individual. Modular programs allow for more flexibility and may be tailored to meet and address a wider range of unique needs of children and adolescents (Chorpita 2007).

Current Knowledge Greater concerns have been expressed in recent years regarding comorbid mental health problems for children with ASD (Ung et al. 2014). Anxiety is a common problem among children and adolescents with ASD (Vasa et al. 2014). Children with ASD tend to be at higher risk for developing significant levels of anxiety than typically developing children (White et al. 2009). While the prevalence of anxiety disorders in typically developing individuals is estimated to be up to 8%

the prevalence of anxiety disorders in typically developing individuals is estimated to be up to 8% (American Academy of Pediatrics 2019), some studies indicated that 40% to 84% children with ASD either meet the diagnosis criteria for various anxiety disorders or report high rates of anxiety (Sukhodolsky et al. 2013). Moreover, the prevalence of anxiety disorders and symptoms in individuals with ASD is also higher than individuals from other disability groups (Vasa et al. 2014). Due to these

ASD is also higher than individuals from other disability groups (Vasa et al. 2014). Due to these facts, several studies have been conducted to obtain more information regarding the nature of anxiety symptoms in children with ASD in order to investigate possible overlap in anxiety symptoms and ASD characteristics. Notably, studies have affirmed the similarities between anxiety symptoms and core symptoms of ASD (Wood and Gadow 2010). Recently, Kerns et al. (2014) indicated that some individuals

of ASD (Wood and Gadow 2010). Recently, Kerns et al. (2014) indicated that some individuals with ASD showed atypical anxiety symptoms that were not consistent with any DSM-5 criteria. As of now, anxiety symptoms of children with ASD are commonly measured by standardized assessment measures that have been developed for assessing anxiety symptoms in typically developing children (Sterling et al. 2015). Examined together, these factors may cause children with ASD to remain unidentified or

et al. 2015). Examined together, these factors may cause children with ASD to remain unidentified or insufficiently supported in both social and school environments. Nonetheless, while the actual rate of anxiety in children with ASD remains unclear, already identified individuals with a high level of anxiety should able to receive the best treatment options available.

Children with ASD typically have difficulties in social interactions, communication, and academic performance (American Psychiatric Association [APA] 2013; Leyfer et al. 2006). High levels of anxiety exacerbate these characteristics and further negatively impact their abilities across the school, home, and community environments (Reaven et al. 2008; Sukhodoldsky et al. 2008). Without intervention, high levels of anxiety experienced by many children with ASD may lead to additional mental health

high levels of anxiety experienced by many children with ASD may lead to additional mental health problems such as depression, substance abuse, and suicide attempts (Fujii et al. 2012). In recent years, there is also a growing body of research that has illustrated that most children with ASD face difficulties in using their cognitive potential to communicate or build social relationships, which leads to developing high levels of anxiety (Estes et al. 2011). Given the high prevalence of anxiety

to developing high levels of anxiety (Estes et al. 2011). Given the high prevalence of anxiety in children with ASD, there has been a recent push for the implementation of CBT as an evidence-based treatment program to treat anxiety in children with ASD (Clarke et al. 2016).

CBTs are considered primary treatment options for anxiety in typically developing children across different settings. Seligman and Ollendick (2011) indicated that over 269 meta-analytic studies have demonstrated the efficacy of the CBT for the treatment for wide range of problems including the efficacy of CBTs for children and adolescents with anxiety disorders. Overall, these studies indicated that two-thirds of children with anxiety disorders showed no anxiety symptoms after CBT (Seligman and

two-thirds of children with anxiety disorders showed no anxiety symptoms after CBT (Seligman and Ollendick (2011). Although much of the current literature on CBT involves typically developing children, increasing attention is currently being given by researchers for using CBT to treat anxiety symptoms in children with ASD. Findings of randomized controlled trial studies, as well as meta-analyses, support that children with ASD benefit from CBT treatments for anxiety disorders (Ung et al. 2014).

support that children with ASD benefit from CBT treatments for anxiety disorders (Ung et al. 2014). Moreover, the current evidence provides support to use CBT for children with ASD. However, implementations of CBT programs with adaptations for ASD require additional research on the necessary adaption components, and future studies need to be conducted that have better implementation fidelity of the CBT programs for children with ASD (Perihan et al. 2019).

A growing number of studies have begun to examine the efficacy of CBTs for anxiety in children with ASD, and an increased body of research has demonstrated that CBT is an effective treatment with adaptations for these youth (Ung et al. 2014). A recent meta-analysis (Perihan et al. 2019) reported that CBT appears as an effective treatment option for children with ASD. Twenty-three published studies of CBT for anxiety in children with ASD were included. Studies varied in sample size from 6 to 69

of CBT for anxiety in children with ASD were included. Studies varied in sample size from 6 to 69 participants and used varied types of CBTs lasting between 4 and 32 weekly sessions. Outcomes were assessed by examining different types of parent, child, and teacher questionnaires which were designed to measure anxiety in typically developing children. Results yielded a moderate effect size (g ¼  0.66) for the reduction of anxiety symptoms; children who received CBT treatment had reduced levels

0.66) for the reduction of anxiety symptoms; children who received CBT treatment had reduced levels of anxiety.

To understand potential factors that affect treatment responses of CBT for anxiety, parental involvement and treatment lengths were examined. Several studies have demonstrated that parents of children with ASD are at increased risk of having a higher level of parental stress than parents of typically developing children (Conner et al. 2013). Researchers have paid particular attention to exploring the relationship between parental anxiety and anxiety symptoms in individuals with ASD, as well as

the relationship between parental anxiety and anxiety symptoms in individuals with ASD, as well as possible effects of parental anxiety in treatment response (Reaven et al. 2015). Analysis of parental involvement indicated that individuals with ASD received the most benefit from CBTs when parents were involved in the interventions. This finding provides additional support for the research that expressed that parents may play a critical role in changes in child anxiety (Sofronoff et al. 2005).

that parents may play a critical role in changes in child anxiety (Sofronoff et al. 2005). Moreover, the involvement of parents in CBT programs provides an opportunity to assist children in practicing coping skills when they are faced with challenges outside of school (Weiss et al. 2014). Surprisingly, a few studies showed that parents also derived benefits from their involvement in CBT treatments. They were able to apply the key CBT concepts to themselves to manage their feelings, as well as to

They were able to apply the key CBT concepts to themselves to manage their feelings, as well as to reduce both their anxiety and parental stress (Ooi et al. 2008; Reaven et al. 2015). This finding points to the possible impact of parental involvement on treatment responses of CBT for anxiety in this population.

Recently, studies have consistently noted that children with ASD may need extended time to understand and apply newly learned cognitive strategies for coping with their feelings (Clarke et al. 2016). Thus, the recent meta-analysis (Perihan et al. 2019) aimed to investigate the possible impact of the treatment length on treatment response. Findings demonstrated that treatment effects associated with short-term interventions were significantly weaker than those obtained in standard-term and

with short-term interventions were significantly weaker than those obtained in standard-term and long-term interventions. Some studies have also aimed to increase the efficacy of interventions in a short period of time (e.g., 1 week) by extending the contact time with clients. However, the results of the studies suggest that extended time rather than more contact time is required for the clients to learn and apply the cognitive strategies implemented. It is thus likely that children also need

to learn and apply the cognitive strategies implemented. It is thus likely that children also need extended time rather than more contact time to learn and apply cognitive strategies for coping with their anxieties.

Future Directions A major focus in the development of CBT for children with ASD is the continuing adaptation for school-based settings. In 2014, about 1 in 59 children were identified with ASD by age 8; that statistic is constantly increasing. Furthermore, anxiety-related symptoms are significantly common problems in children with ASD (White et al. 2009). CBT is one of the most effective evidence-based treatments of anxiety in typically developing children, and a growing body of research,

treatments of anxiety in typically developing children, and a growing body of research, including the previously discussed meta-analysis, have clearly documented the impressive results of CBTs in treating anxiety among children with ASD. However, while CBT, especially CBT with modifications or adaptions for ASD (Perihan et al. 2019), appears helpful, some recommendations should be considered for future studies.

The first and most important consideration for future studies is transferring CBTs from clinic to school settings. The focus on inclusion in schools means a greater number of students with ASD are going to be placed and be educated in general education classrooms with their typically developing peers (Feraioli and Harris 2011). A substantial body of research has demonstrated that children with ASD already face difficulties in social interactions and communication (APA 2013). The move toward

ASD already face difficulties in social interactions and communication (APA 2013). The move toward inclusion of students with ASD is likely to exacerbate those social interaction and communication programs and increase the level of anxiety experienced by this population. Despite school being an appropriate environment for intervention programs for children with ASD, most of the previous studies were of CBTs delivered in clinic settings by clinicians (Perihan et al. 2019). In a review of the

were of CBTs delivered in clinic settings by clinicians (Perihan et al. 2019). In a review of the literature, Perihan et al. (2019) found medium to large effect sizes that ranged between  2.40 and   0.40 for school-based CBT treatments in children with ASD (e.g., Clarke et al. 2016; Fujii et al. 2012). These findings provide initial support for the delivery of CBT programs in school settings by a range of professionals – such as teachers and counselors with appropriate training and supervision

range of professionals – such as teachers and counselors with appropriate training and supervision (Clarke et al. 2016). Introducing CBT programs into school settings that are administered by school professionals will also increase the accessibility of treatments of anxiety for children with ASD (Mcconachie et al. 2013). Otherwise, the limited number of clinicians will contribute to fewer students being treated in school systems.

Today, the treatment of anxiety symptoms with CBT in children with ASD is still progressing, and researchers are continuing to identify the modifications and adaptations that should be made to existing CBT programs to meet the needs of children with ASD. For future studies, evidence-based guidelines may be required to examine whether these modified CBTs have been implemented accurately with necessary quality components to ensure they are efficient and generalizable (Seligman and Ollendick (2011).

quality components to ensure they are efficient and generalizable (Seligman and Ollendick (2011). As such, it is necessary to include implementation fidelity in studies to investigate the quality of each CBT program or protocol used.

Last, there is continuing uncertainty about the measures used to evaluate anxiety in children with ASD. Most studies have used outcome measures that have been designed to assess anxiety symptoms in typically developing children. It is becoming clear that children with ASD may possess atypical anxiety symptoms which may not be captured by existing measures (Kerns et al. 2014). There is also emerging evidence for similarities in anxiety symptoms and ASD characteristics (Bellini 2006). Social

evidence for similarities in anxiety symptoms and ASD characteristics (Bellini 2006). Social interactions and communication problems are primary characteristics of children with ASD, which may increase levels of anxiety. Likewise, the difficulty of school settings may increase or intensify the levels of anxiety in children with ASD (White et al. 2009). In order to make a distinction between anxiety symptoms and autism characteristics, future studies should include outcome measures specifically

symptoms and autism characteristics, future studies should include outcome measures specifically for assessing the autism vs. anxiety symptoms of children with ASD.

Cognitive Correlates of Reciprocity in Children with Autism Spectrum Disorder  Definition The important cognitive factors associated with reciprocity in children with autism spectrum disorder (ASD) include the social-cognitive factor “theory of mind (ToM)” and the cognitive factors “cool” and “hot” executive function (EF).

Historical Background Reciprocity in Children with ASD Reciprocal behavior is pivotal to the process of collaborative behavior between individuals who perform activities to reach shared goals (Cole and Teboul 2004). People who perform reciprocity successfully are aware of others’ emotional and interpersonal cues, interpret those cues appropriately, respond suitably to what they interpret, and are motivated to engage in social interactions with others (Constantino et al. 2003). Reciprocity

are motivated to engage in social interactions with others (Constantino et al. 2003). Reciprocity consists of mutual and symmetrical exchanges between individuals as they talk, work, or play together (Gernsbacher 2006). Such collaboration is a critical component of human social behavior, one in which we engage often in social contexts (Hammerstein 2003; Stevens and Hauser 2004). If people do not equally participate and exchange with fine turn-taking, collaboration will fail, leading to

do not equally participate and exchange with fine turn-taking, collaboration will fail, leading to unsatisfactory results (Cole and Teboul 2004). A child’s ability to perform reciprocal behaviors develops along with age, depending on both the child’s cognitive ability and emotional functioning (Perez and Gauvain 2005). Therefore, reciprocity is an important skill for social interaction.

A study by Sakaiya et al. (2013) investigated the neural process of human reciprocity in social interactions with prisoner’s dilemma (PD) games, which are used to examine cooperative behavior in adults. An important component of PD games is the Nash equilibrium, which represents mutual defection. Such equilibrium leads to lower payoffs for each player than does mutual cooperation and thus poses a dilemma. To investigate the neural correlates of reciprocal interaction, the researchers

poses a dilemma. To investigate the neural correlates of reciprocal interaction, the researchers manipulated the partner identity (human, computer) and strategy (random, tit-for-tat) in the game. The results showed that, in the human-as-partner condition, tit-for-tat and random strategies were positively and negatively correlated with activation of the left amygdala. This activation represented positive feelings toward reciprocal partners and negative feelings toward nonreciprocal partners.

positive feelings toward reciprocal partners and negative feelings toward nonreciprocal partners. That study also examined the neural process of insight into the reciprocity of partners. Reciprocity influenced differential brain activation in the reward-related circuitry (i.e., the right middle dorsolateral prefrontal cortex and dorsal caudate) and theory of mind (ToM) regions [i.e., the ventromedial prefrontal cortex (VMPFC) and precuneus]. In participants without insight into their human

prefrontal cortex (VMPFC) and precuneus]. In participants without insight into their human partners, a tit-for-tat strategy led to asymmetrical activation in the precuneus and VMPFC and activation of the precuneus accompanied by the deactivation of the VMPFC. In summary, the amygdala processes the intensity of emotion in human reciprocity, and the reward-related and ToM regions control the insight into the reciprocity of others.

From infancy, children display motivation for engaging in joint actions and sharing psychological states with others (Carpenter 2009; Feldman and Greenbaum 1997; Trevarthen and Aitken 2001). At as early as 2 months old, mother–infant interactions involve looking at and listening to each other, mutually regulating one another’s interests and feelings, exchanging multimodal signals, and imitating vocal, facial, and gestural expressions. During the course of early childhood development, a child’s

facial, and gestural expressions. During the course of early childhood development, a child’s ability to collaborate with others develops from basic to more advanced levels. At around 2 years of age, children begin playing in proximity to each other, doing the same types of activities. In such so-called parallel activity, the children’s attention is focused on the same object, but they operate it separately, without engaging in mutual exchanges. In essence, they are playing alone, rather than

separately, without engaging in mutual exchanges. In essence, they are playing alone, rather than with other children (van Ommeren et al. 2012). Gradually, the children begin interacting with other children, exhibiting reciprocal behaviors such as equal turn-taking and object sharing (Eckerman et al. 1989; Warneken and Tomasello 2006). At 3 years of age, children begin sharing themes with their playmates, such as building a sandcastle together (Howes 1988). During middle childhood, when

their playmates, such as building a sandcastle together (Howes 1988). During middle childhood, when children begin to understand others’ goals and intentions, they exhibit collaborative reciprocal behaviors. At this age, children have gained the requisite skills and motivation to share psychological states with others (Tomasello et al. 2005). This sharing behavior, which consists of basic to complex reciprocity, enables children to achieve common goals, such as building a small playhouse or

reciprocity, enables children to achieve common goals, such as building a small playhouse or drawing a picture (van Ommeren et al. 2012).

Previous studies have investigated the reciprocity ability of children with ASD. In the study of Sally and Hill (2006), children with ASD and normal IQ were found to reciprocate adequately in a structured test; e.g., on a prisoner’s dilemma task. However, adequate performance observed in a structured assessment does not necessarily carry over to real-life interactions. In unstructured real-life interactions, children with ASD are unable to show appropriate reciprocal behaviors with peers and

interactions, children with ASD are unable to show appropriate reciprocal behaviors with peers and adults. In the Diagnostic and Statistical Manual of Mental Disorders, fourth edition, it is noted that children with ASD have qualitative impairment in social interaction, including failure to develop peer relationships; a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people; and a lack of social or emotional reciprocity (APA 2000). Ozonoff and Miller (1995)

other people; and a lack of social or emotional reciprocity (APA 2000). Ozonoff and Miller (1995) found that children with ASD have lower scores in the Socialization domain (which is correlated with reciprocity in daily life) of the Vineland Adaptive Behavior Scale (VABS). The studies of Kasari et al. (2011); Rotheram-Fuller et al. (2010); and Chamberlain et al. (2007) investigated the social networks and friendship reciprocity of children with ASD in elementary school. It was found that

networks and friendship reciprocity of children with ASD in elementary school. It was found that children with ASD have lower social network centrality and less friendship reciprocity than their typically developing peers do.

The social reciprocity deficit described above can lead to consequences for children with ASD. School-aged children and adolescents with ASD have increased risk of peer rejection and social isolation (Chamberlain et al. 2007). These children also express that they have less social support and more loneliness than typically developing children (Bauminger and Kasari 2000). The deficit may also lead to underachievement in academics and their later occupations (Howlin and Goode 1998). At the later

to underachievement in academics and their later occupations (Howlin and Goode 1998). At the later stages of development, social reciprocity deficit may increase the risk of mood and anxiety problems (Myles et al. 2001; Tantam 2003). However, the above evidence for this impairment is primarily based on observations of children in daily life, rather than direct assessments with psychological instruments (van Ommeren et al. 2012). Therefore, reciprocity performance in the laboratory context is not

(van Ommeren et al. 2012). Therefore, reciprocity performance in the laboratory context is not correlated with social interactions in daily life.

Theory of Mind in Children with ASD Theory of mind (ToM) has been used interchangeably with terms such as “perspective-taking,” “social cognition,” “metacognition,” and “folk psychology.” (Astington and Baird 2005; Flavell et al. 2002). ToM is a cognitive ability (Adolphs 2001) whereby a person understands and infers the mental states (e.g., belief, desires, and intentions) of others and uses that information to explain and predict behaviors and actions (Premack and Woodruff 1978; Wellman

that information to explain and predict behaviors and actions (Premack and Woodruff 1978; Wellman 1993). ToM assessment traditionally has relied on the false-belief task (Wimmer and Perner 1983), which identifies the ability to realize that people may have different or false understandings and representations of a given situation (Dennett 1978). However, ToM is understood to be a complex and multifaceted construct. Some researchers have recommended that various aspects of ToM be assessed across

construct. Some researchers have recommended that various aspects of ToM be assessed across levels of complexity (Tager-Flusberg 2001; Wellman et al. 2001) and suggested that it is constructed of related but distinct types of social cognitive understanding (Hughes et al. 2000), such as emotion recognition (Prior et al. 1990), desire-based emotion (e.g., understanding that people are happy when they get what they want), belief-based emotion (e.g., understanding that people will be happy if they

get what they want), belief-based emotion (e.g., understanding that people will be happy if they think they will get what they want) (Baron-Cohen 1991), understanding that seeing leads to knowing (Perner et al. 1989), and understanding that people see the same object in different ways (e.g., by positioning) (Pillow and Flavell 1986). Complex, or higher-order, ToM is typically measured with a second-order false-belief task (e.g., what Wendy thinks Patty thinks) to assess inferences of both

second-order false-belief task (e.g., what Wendy thinks Patty thinks) to assess inferences of both belief and emotion (Hughes et al. 2000).

ToM is a prerequisite skill for developing reciprocal communication and social interactions (Wellman 1990). It helps people understand and distinguish emotional states and complex social information. This ability also helps children to develop more complicated social cognitive skills, such as perspective-taking, collaboration, and metacognition (Sally and Hill 2006).

Infants display some behaviors that are important beginnings for theory-of-mind development. By 2–3 months, they are able to participate in simple social interactions with others and can coordinate their gestures, vocalizations, and facial expressions with others (Mar et al. 2010). By the age of 2, children clearly show awareness of the difference between thoughts in the mind and things in the world (e.g., pretending a block is a car) (Kavanaugh 2006). They also understand belief-based emotion

(e.g., pretending a block is a car) (Kavanaugh 2006). They also understand belief-based emotion (e.g., people will feel happy if they get what they want) (Wellman and Banerjee 1991). A crucial development occurs at around 4 years of age, when children realize that thoughts in their minds may not be true. At age 4 or 5, children develop the ability to understand a first-order false-belief task (Wimmer and Perner 1983), and they realize that people talk and act on the basis of the way they think

and Perner 1983), and they realize that people talk and act on the basis of the way they think the world is, even when their thoughts do not reflect the actual situation. After 5 years old, children develop advanced mental understanding, such as second-order false-belief, lies, and metacognition (Astington and Gopnik 1991).

Many researchers have concluded that ToM deficits underlie the social, behavioral, and communicative impairments in individuals with ASD (Baron-Cohen et al. 1985). The most common ToM assessment is the classic false-belief task, originally developed by Wimmer and Perner (1983). In this task, children are told a story in which an object is moved from an old location to a new location without the knowledge of the main protagonist. The children are asked, “Where would the main protagonist look for

of the main protagonist. The children are asked, “Where would the main protagonist look for the object?” The old location is the correct answer. As compared with age- and language-matched peers, individuals with ASD generally perform poorly on the false-belief task. In a study by Baron-Cohen et al. (1985), the Sally-Anne task (first-order false-belief task) was used to examine ToM in children with ASD, and fewer individuals with ASD (20%) passed the test than did typically developing children

ASD, and fewer individuals with ASD (20%) passed the test than did typically developing children (85%). In Baron-Cohen (1989), a second-order false-belief task was used to examine ToM in children with ASD. In that study, none of the children with ASD passed, while 90% of the typically developing children did. In addition, children with ASD are reported to have difficulties in using logic, inferring beliefs, and recognizing emotions (Prior et al. 1990). In Baron-Cohen (1991), the researchers

beliefs, and recognizing emotions (Prior et al. 1990). In Baron-Cohen (1991), the researchers examined whether individuals with ASD understand some causes (situations, desires, beliefs) of emotions. They found that children with ASD showed deficits in the comprehension of emotions caused by belief as compared with mental age-matched peers. In summary, children with ASD show deficits in both higher-level and lower-level ToM tasks.

Executive Function in Children with ASD According to Lezak (1995), “Executive functions refer to a collection of interrelated cognitive and behavioral skills that are responsible for purposeful, goal-directed activity, and include the highest level of human functioning.” This collection encompasses the ability to suppress responses, to keep and manipulate information online, to change strategies, and to plan ahead. Executive function allows people to access information, think about solutions,

and to plan ahead. Executive function allows people to access information, think about solutions, and implement those solutions.

Nowadays, EF is divided into cool and hot aspects. Cool executive function (Cool EF) is defined as goal-directed and future-oriented skills manifested within abstract, decontextualized, nonemotional, and analytical conditions. It is a more purely cognitive aspect of EF usually associated with the dorsolateral prefrontal cortex (DLPFC) (Metcalfe and Mischel 1999). Hot executive function (Hot EF) is defined as goal-directed and future-oriented cognitive processes manifested within the contexts of

defined as goal-directed and future-oriented cognitive processes manifested within the contexts of engendering emotion and motivation (Zelazo and Carlson 2012; Zelazo and Müller 2002; Zelazo et al. 2005). It is the affective aspect of executive function and is usually associated with the orbital frontal cortex (OFC) and other medial regions (Happaney et al. 2004).

Despite the numerous investigations of cool executive function in children with ASD, the results have been inconsistent (Geurts et al. 2009; Hill 2004). Some studies have indicated that children with ASD have difficulties in tasks requiring working memory, inhibition, and set shifting ability as compared to their typically developing peers (Hughes et al. 1994; Szatmari et al. 1989), while others have cast doubt on those findings. Recent studies have found that EF performance is affected by the

have cast doubt on those findings. Recent studies have found that EF performance is affected by the age of the participants. Older children and adults score worse than their mental age-matched peers, while younger children with ASD exhibit no impairments as compared to their peers (Dawson et al. 1998; McEvoy et al. 1993; Yerys et al. 2007). It is suggested that executive function deficit may not be the primary deficit in children with ASD; rather, it may be a secondary one that manifests as the

be the primary deficit in children with ASD; rather, it may be a secondary one that manifests as the children develop (Yerys et al. 2007).

Some researchers have suggested that autism and related disorders may involve deficits in global processing and social and emotional functioning (i.e., hot EF) (Happaney et al. 2004), which are controlled by the right and left VMPFC hemispheres. Bechara (2004) suggests that the differential involvement in the right and left hemispheres in avoidance (negative affect) and approach (positive affect) lead to right–left hemispheric asymmetries in the OFC (VM-PFC) (Davidson and Irwin 1999; Davidson

lead to right–left hemispheric asymmetries in the OFC (VM-PFC) (Davidson and Irwin 1999; Davidson et al. 2000). For example, the Iowa Gambling Task requires adaptive decision-making, for seemingly positive responses need to be avoided (a function for which the right VM-PFC may be particularly well suited). The right hemisphere has also been implicated in the mapping of bodily states and the comprehension of somatic information (Cohen et al. 1976), which may help to explain the relative

comprehension of somatic information (Cohen et al. 1976), which may help to explain the relative importance of the right OFC in hot EF (Bechara 2004).

Based on a previous literature review on reciprocity, it appears that EF and ToM are important factors in reciprocity in children with ASD. When directly examining the relationships between ToM and reciprocity in children with ASD with the behavioral approach, Sally and Hill (2006) found that children with ASD have impaired ToM ability in both first- and second-order false-belief tasks as compared to their typically developing peers, but the results for reciprocity in games did not show

compared to their typically developing peers, but the results for reciprocity in games did not show significant group differences. As explanation, the authors suggested that ToM skills may not be needed in structured computer games. Examinations of the relationships between EF and reciprocity in children with ASD with the behavioral approach have identified the neural correlates of reciprocity (Sakaiya et al. 2013). The DLPFC and VMPFC are active during reciprocal behaviors. Cool EF, controlled

et al. 2013). The DLPFC and VMPFC are active during reciprocal behaviors. Cool EF, controlled by the DLPFC, may affect reciprocity performance. However, no behavior studies have directly investigated the relationship between cool EF and reciprocity in children with ASD. Hot EF, which is controlled by the OFC, one part of the VMPFC, may affect reciprocity performance.

Current Knowledge ToM and cool EF have been used to explain social deficits. In addition, the brain regions controlling ToM and EF appear to be the neural correlates of reciprocity in children with ASD. However, these two theories, ToM and cool EF, cannot fully explain reciprocity in children with ASD, possibly due to a lack of consideration of the importance of motivation and emotion. To date, only the behavioral study of Lai and her colleagues has examined ToM and EF simultaneously in the

only the behavioral study of Lai and her colleagues has examined ToM and EF simultaneously in the reciprocity in children with ASD. In Lai et al.’s study, a total of 59 children with diagnoses of autistic disorder or Asperger’s syndrome aged from 4 to 12 years were recruited. In addition to the children’s verbal ability and autistic severity, their reciprocity (van Ommeren et al. 2012), ToM, cool EF, and hot EF were examined with the Interactive Drawing Task (IDT), Theory of Mind Task Battery

EF, and hot EF were examined with the Interactive Drawing Task (IDT), Theory of Mind Task Battery (Hutchins et al. 2012), Dimensional Card Change Sort Task (DCCS) (Diamond and Kirkham 2005; Dichter et al. 2010), and Children’s Gambling Task (Kerr and Zelazo 2004). The IDT was specifically used in Lai et al.’s study to measure children’s reciprocity performance (van Ommeren et al. 2012). The IDT is designed to examine reciprocity in a joint, unstructured situation to re-create the unstructured,

designed to examine reciprocity in a joint, unstructured situation to re-create the unstructured, unpredictable aspects of real-life social interactions. During the IDT, children are invited to draw a house with the experimenter. Requiring no real drawing skill, the test elicits spontaneous interaction with the experimenter to achieve a mutual goal. The IDT lasts approximately 10 min and requires only a table, drawing paper of size A3, four colored markers (red, blue, black, green), and a video

only a table, drawing paper of size A3, four colored markers (red, blue, black, green), and a video camera. At the beginning of the test, the experimenter says, “We are going to draw together. You may choose a marker.” No other instructions are provided. The goal of the IDT is to elicit equal participation of the participants, with the experimenter setting a good example of how to collaborate with others. To do so, the experimenter performs reciprocal behaviors with increasing dynamics, such as

others. To do so, the experimenter performs reciprocal behaviors with increasing dynamics, such as beginning to draw his or her own objects and contributing to the child’s objects. The experimenter also elicits reciprocal behaviors by drawing incomplete objects and by demonstrating reciprocal responses, such as adding elements to an incomplete drawing by the child. Then the experimenter encourages turn-taking by turning the paper to the child, an action that is repeated throughout the test.

turn-taking by turning the paper to the child, an action that is repeated throughout the test. This assessment measures three types of reciprocal behaviors. The first is the proportion of reciprocal drawing (i.e., collaborating by adding meaningful elements) of the total turns, or total reciprocity. Reciprocal drawing (total reciprocity) is divided into the proportion of reciprocity in the other’s initiative and reciprocity in the child’s own initiative. The former is the amount of reciprocity

initiative and reciprocity in the child’s own initiative. The former is the amount of reciprocity in the objects drawn by the experimenter, and the latter is the amount of reciprocity in those drawn by the child.

By measuring reciprocity, ToM, hot EF, and cool EF, Lai et al. showed that cool EF and hot EF are both significantly correlated with reciprocity and that in children with ASD, only verbal ability is significantly correlated with reciprocity in the child’s own initiative. In Lai et al.’s study, cool EF and hot EF were significantly correlated with reciprocity in children with ASD. They also found that cool EF was the significant correlate for reciprocity in the child’s own initiative. However, none

cool EF was the significant correlate for reciprocity in the child’s own initiative. However, none of the variables in their study were significantly associated with reciprocity in the other’s initiative. Therefore, children with better cool EF and hot EF may have better reciprocity capacity and reciprocity in the child’s own initiative. However, the correlate of reciprocity in the other’s initiative was not identified in their study, so the correlates of children’s reciprocity in the other’s

was not identified in their study, so the correlates of children’s reciprocity in the other’s initiative remain undetermined.

In Lai et al.’s study, cool EF and hot EF were significantly correlated with reciprocity. Children with better cool EF and hot EF ability may perform more reciprocal behaviors. Another important result was the significant correlation between cool EF and reciprocity. The cool EF task, the DCCS, focuses on children’s ability to shift attention. Children who can correctly shift their attention based on the sorting rule may perform more reciprocal behaviors because they can more easily shift their

on the sorting rule may perform more reciprocal behaviors because they can more easily shift their attention to the collaborative theme. This conclusion is consistent with neural process research reporting that the neural correlate of reciprocal behaviors is the DLPFC, the neural region for cool EF (Sakaiya et al. 2013). Hot EF, however, is a goal-directed and future-oriented cognitive process, manifested within the contexts of engendering emotion and motivation (Zelazo and Carlson 2012; Zelazo

within the contexts of engendering emotion and motivation (Zelazo and Carlson 2012; Zelazo and Müller 2002; Zelazo et al. 2005). It appears to be significantly associated with the capacity for reciprocal behavior. It is possible that the IDT requires that motivation be maintained; if so, the importance of the drawing themes may need to be reappraised. Children with better hot EF ability, having the ability to keep their attention and motivation focused on the reciprocal themes, can contribute

the ability to keep their attention and motivation focused on the reciprocal themes, can contribute meaningful elements toward the collaborative goals.

The nonsignificant relationship between ToM and reciprocity reported by Lai et al. may have two possible explanations. The first is the obvious nature of the drawing theme of the experimenter. The children may not have needed to employ ToM to speculate on the experimenter’s behaviors. The second is the lack of structure and unpredictability of the IDT. Faced with this unstructured situation, the children with ASD might have found it difficult to generalize their ToM ability to it and thus been

children with ASD might have found it difficult to generalize their ToM ability to it and thus been unable to respond properly. Despite being able to perform well on the ToM task, the unstructured context may have limited their ability to perform well on the reciprocity task. This explanation is consistent with findings that, in an unstructured context, children with ASD have difficulties applying their ToM. High-functioning adolescents and adults with ASD can pass ToM tasks at various levels of

their ToM. High-functioning adolescents and adults with ASD can pass ToM tasks at various levels of complexity (Dahlgren and Trillingsgaard 1996). In structured situations, they can respond properly (Begeer et al. 2010), but in unstructured and unpredictable situations, they cannot. However, Tomasello et al. (2005) found that children with ASD have fewer reciprocal behaviors, possibly due to difficulties in understanding others’ intentions. This finding is inconsistent with the nonsignificant

difficulties in understanding others’ intentions. This finding is inconsistent with the nonsignificant correlation between ToM and reciprocity of Lai et al.’s study. In summary, the relationship between ToM and reciprocity needs to be further clarified, and the task characteristics, such as the collaborative themes and unstructured or structured tasks used in measuring children’s reciprocal behaviors and social interaction, also need to be considered.

As for reciprocity in the child’s own initiative and reciprocity in the other’s initiative, the present literature suggests that children with ASD present more reciprocity in their own initiative than in another’s initiative. It is possible that their restricted behaviors interfere with their ability to shift their attention to another’s drawing theme. For instance, in Lai et al.’s study, many of the participants focused on drawing dinosaurs, cars, and busses; they had a hard time following

of the participants focused on drawing dinosaurs, cars, and busses; they had a hard time following the experimenter’s initiative. Another study, van Ommeren et al. (2012), also suggested that children with ASD preferred to lead the drawing themes because they wanted to avoid the confrontation of unexpected situations. To do so, they would perform more reciprocity on their own initiatives.

In addition, children’s reciprocity performance on the IDT can be divided into three types: active, passive, and proper reciprocity. Children exhibiting active reciprocity present much reciprocity in their own initiatives and draw typical objects such as cars and busses. Like younger children diagnosed with Asperger’s syndrome, these children show only limited responses to the experimenter’s initiatives. Children exhibiting passive reciprocity respond well to the experimenter’s initiative,

initiatives. Children exhibiting passive reciprocity respond well to the experimenter’s initiative, following the experimenter’s drawing theme. However, these children rarely initiate their own drawing themes, depending on the experimenter to lead them. Children exhibiting proper reciprocity balance their responses to their own initiatives and to the experimenter’s initiatives. They take turns with the experimenter in assuming the leading role, so the dynamic between the experimenter and the

with the experimenter in assuming the leading role, so the dynamic between the experimenter and the child is relatively high. These types of reciprocal behaviors on the IDT are fairly consistent with the four types of social interaction styles (Castelloe and Dawson 1993; O’Brien 1996; Scheeren et al. 2012): typical, active-but-odd, passive, and aloof. The active type of IDT performance, wherein the children develop their own drawing themes but fail to respond properly to the experimenter’s, is

children develop their own drawing themes but fail to respond properly to the experimenter’s, is similar to the behaviors of active-but-odd children. These children seek out social interaction but do so in an unusual way, such as holding one-sided conversations about their own interests. The passive type of IDT performance, in which the children seldom initiate their own drawings but add proper, meaningful elements to the experimenter’s, is similar to the behaviors of passive children. These

meaningful elements to the experimenter’s, is similar to the behaviors of passive children. These children do not initiate social interaction, but they respond appropriately to another’s initiative. The proper type in IDT performance, wherein the children both initiate their own themes and participate in the experimenter’s, resembles the behaviors of typical children, who act properly in social interactions. The absence of any reciprocity on the IDT thus may resemble the behaviors of aloof

interactions. The absence of any reciprocity on the IDT thus may resemble the behaviors of aloof children, who neither seek out social interaction nor respond to another’s initiative. This can be expected, since such children usually have less verbal ability and are low-functioning. Considering the similarities between the types of IDT performance and social interaction styles, an important correlate of reciprocity in the child’s own or another’s initiative may be the children’s social

correlate of reciprocity in the child’s own or another’s initiative may be the children’s social interaction styles.

In conclusion, children with ASD who have better cool EF and hot EF may have better reciprocity capacity, which can be used as the basis for targeting interventions and as the foundation for further study. For clinicians, it is necessary to focus evaluations and interventions on cool EF and hot EF. With such measurement, clinicians could understand the children’s cool EF, hot EF, and reciprocity and thereby detect progress after interventions. Based on the evaluations, interventions targeting

and thereby detect progress after interventions. Based on the evaluations, interventions targeting cool EF and hot EF could be provided to improve the children’s reciprocal behaviors.

Future Directions At this stage, the current existing findings cannot be generalized to lower-functioning and nonverbal children with ASD, and their social interaction styles have not been assessed. Future studies should consider recruiting lower-functioning children and those with less verbal ability, use corresponding measurements adjusted for these children, and add a measurement for evaluating social interaction styles. In addition, as regards the relationship between ToM and reciprocity,

social interaction styles. In addition, as regards the relationship between ToM and reciprocity, further study is warranted to better elucidate the relationship between ToM and reciprocity with consideration of the task characteristics, such as the collaborative themes and unstructured or structured tasks used in measuring children’s reciprocal behaviors.

Cognitive Enhancement Therapy  Synonyms CET; Cognitive rehabilitation; Cognitive remediation; Social cognition training  Definition Cognitive Enhancement Therapy is a comprehensive cognitive rehabilitation intervention designed to improve the social and non-social cognitive impairments that limit adaptive function and quality of life in certain neurodevelopmental disorders. The treatment integrates computer-based cognitive remediation exercises in attention, memory, and problem-solving with a

computer-based cognitive remediation exercises in attention, memory, and problem-solving with a small group-based social cognitive training curriculum designed to improve perspective-taking, social context appraisal, emotion perception and management, and other key aspects of social cognition. Through these integrated activities, Cognitive Enhancement Therapy addresses the core neurocognitive and social cognitive deficits experienced by verbal adults with autism spectrum disorders.

Historical Background Cognitive Enhancement Therapy (CET) was developed in the 1990s by Professor G. E. Hogarty for the treatment of social and non-social cognitive impairments in schizophrenia. The development of CET was influenced by the holistic cognitive rehabilitation approach of Ben-Yishay et al. (1985) for individuals suffering from a traumatic brain injury, as well as Brenner’s (2000) Integrated Psychological Therapy for schizophrenia. During the late 1990s and early 2000s, Hogarty and

Psychological Therapy for schizophrenia. During the late 1990s and early 2000s, Hogarty and colleagues conducted a series of research studies supported by the National Institute of Mental Health that developed CET, established its evidence base for patients with schizophrenia and schizoaffective disorder (Hogarty et al. 2004; Eack et al. 2009), and created a comprehensive treatment manual outlining the methods of the approach (Hogarty and Greenwald 2006). A key finding from these studies was

the methods of the approach (Hogarty and Greenwald 2006). A key finding from these studies was that CET could not only improve core social and non-social cognitive impairments in schizophrenia but that its early application could protect against brain loss and support gray matter growth in areas of the brain involved in social cognitive information processing (Eack et al. 2010b). The positive findings of CET in schizophrenia led the investigators and other researchers to consider the potential

of CET in schizophrenia led the investigators and other researchers to consider the potential applicability of the intervention to other disorders that are characterized by core deficits in information processing and social cognition. Autism spectrum disorders were viewed as primary candidates due to their chronic and debilitating nature, the presence of pervasive impairments in social and non-social cognition, and lack of available interventions for adults. The many similarities between autism

cognition, and lack of available interventions for adults. The many similarities between autism and schizophrenia had led classic psychiatric nosologists to characterize the disorders within the same diagnostic category. Although the categorizing of autism with schizophrenia was ultimately found to be inaccurate, due to sharp distinctions relating to the presence of psychosis and age of onset, evidence continues to highlight that both disorders are similarly affected by marked impairments in

evidence continues to highlight that both disorders are similarly affected by marked impairments in neurocognitive and social cognitive function (Goldstein et al. 2002; Velikonja et al. 2019), which may reflect similar pathophysiologic processes (Pinkham et al. 2007). Such findings provide early support for the applicability of CET to adults with autism spectrum disorders.

In 2009, CET investigators S. M. Eack, D. P. Greenwald, and S. S. Hogarty began collaborating with autism expert N. J. Minshew at the University of Pittsburgh to adapt and conduct the initial feasibility studies of CET in autism. With early support from the National Institute of Mental Health and the Pennsylvania Department of Health, CET treatment materials were successfully adapted from schizophrenia to verbal adults with autism spectrum disorders. In addition, an uncontrolled feasibility

to verbal adults with autism spectrum disorders. In addition, an uncontrolled feasibility study was completed to assess the acceptability of the intervention in autism and measure initial levels of efficacy. As expected, CET proved to be highly applicable to adults with autism and satisfying and acceptable to recipients. Subsequently, a first randomized controlled trial was conducted at the University of Pittsburgh to examine efficacy and establish the evidence base for CET in verbal adults with

of Pittsburgh to examine efficacy and establish the evidence base for CET in verbal adults with autism spectrum disorders, which indicated significant improvements in cognitive function and employment in adults with autism treated with the approach (Eack et al. 2018).

Underlying Theory The underlying theoretical framework for CET relies upon a neurodevelopmental model of schizophrenia (Hogarty and Flesher 1999), which may be applicable to other conditions, such as autism. Neurodevelopmental models situate the core disease process in mental and neurological conditions within the brain, and impairments in brain development and function result in core deficits in cognitive functioning that lead to social and vocational disability. Consistent with

deficits in cognitive functioning that lead to social and vocational disability. Consistent with neurobehavioral models of autism (Minshew and Goldstein 1998), genetic alterations result in early brain abnormalities that affect the development of neural systems responsible for supporting the acquisition of higher-order social cognitive abilities. CET is a developmental approach in that it aims to facilitate cognitive development by shifting reliance from early and effortful serial cognitive

to facilitate cognitive development by shifting reliance from early and effortful serial cognitive processing to a gistful and spontaneous abstraction of social themes needed for effective interpersonal interaction.

The treatment methods employed in CET find their theoretical basis in models of brain plasticity and sociological theories of secondary socialization. The ability of the brain to be shaped, at even a basic molecular level, by environmental experiences has been well-established and is known as neuroplasticity (Buonomano and Merzenich 1998). Strategic practice of cognitive exercises that activate different brain systems has been shown to enhance brain function, synaptic connections, and cortical

brain systems has been shown to enhance brain function, synaptic connections, and cortical organization (Bryck and Fisher 2012). CET builds on this evidence to provide adults with autism the opportunity to engage in targeted cognitive exercises and experiences designed to enhance brain functions associated with improved social and non-social cognition. The enhancement of social cognition is an essential goal of CET and relies on the sociological principles of secondary socialization, where

essential goal of CET and relies on the sociological principles of secondary socialization, where individuals must develop the ability to abstract informal rules for behavior from appraising the context of unrehearsed social situations. Children are initially socialized using primary socialization methods that focus on direct instruction, usually from parents and teachers (e.g., “use your napkin,” “don’t hit your sister,” “wait until it’s your turn”). However, as the complexity of their social

“don’t hit your sister,” “wait until it’s your turn”). However, as the complexity of their social world expands, rigid rules for behavior become less useful, and there is a need for cognitive flexibility in socialization that recognizes the fluidity of adult interactions. Further social cognitive development must utilize secondary sources of information to guide behavior, such as observing the social context and understanding the perspective of others. The development of these abilities is a key

context and understanding the perspective of others. The development of these abilities is a key aspect of the social cognitive curriculum in CET, which are practiced within a small group context.

Goals and Objectives The overall goal of CET is to enhance neurocognitive and social cognitive functioning as a method of improving social adjustment, adaptive function, and quality of life. This is achieved through targeting of two broad goals in the treatment. The first goal is to foster higher-order thinking among CET participants. The emphasis in CET is on helping individuals learn to shift from an earlier, pre-adolescent cognitive style of processing that is characterized by passivity,

from an earlier, pre-adolescent cognitive style of processing that is characterized by passivity, concreteness, rigidity, and rehearsal to a more adult style of information processing that is active, abstract, flexible, and spontaneous. The second goal is to help individuals develop “social wisdom” or the ability to act wisely in social situations, not by learning and rehearsing scripted rules for behavior but by developing the social cognitive abilities that allow for an accurate assessment of

behavior but by developing the social cognitive abilities that allow for an accurate assessment of and response to spontaneous interpersonal interactions. To accomplish this, individuals learn how to appraise different social contexts and identify the related rules and norms for behavior; take the perspective of others to understand their feelings and intentions; be foresightful in responding to social situations; acknowledge and participate in the reciprocal nature of social interactions; and

social situations; acknowledge and participate in the reciprocal nature of social interactions; and ultimately develop a greater level of social comfort. These two goals serve as a guiding foundation for all activities in CET and are actively addressed during both neurocognitive training and social cognitive group sessions.

Treatment Participants Treatment experiences in providing CET to adults with autism spectrum disorder indicate that many individuals with these conditions are likely to benefit from the intervention. Adults with autism have many strengths that they bring to CET, and the goal is to build on these strengths to help improve adaptive function and quality of life. The treatment is applicable to verbal adults with autism spectrum disorder who have an IQ   80 and experience significant social and

adults with autism spectrum disorder who have an IQ   80 and experience significant social and cognitive disability. Currently, CET treatment materials are only available in the English language, and thus proficiency with English is also important. Individuals unlikely to benefit from CET include those with significant intellectual disabilities (IQ < 80), individuals who have not developed language skills, and individuals with an organic brain syndrome, substance use problems, persistent

language skills, and individuals with an organic brain syndrome, substance use problems, persistent suicidality, or disruptive behaviors not conducive to a group context. Individuals with autism commonly experience comorbid psychiatric conditions, such as anxiety or depression, and as long as these conditions are stabilized and managed appropriately, individuals with these conditions may still benefit from CET.

Treatment Procedures Cognitive Enhancement Therapy integrates 60 h of computer-based neurocognitive training in attention, memory, and problem-solving with 45 1.5 h weekly social cognitive group sessions provided over the course of 18 months. Treatment begins with a thorough assessment of the participant’s cognitive and social difficulties. Subsequently, participants begin neurocognitive training in attention. Neurocognitive training contains three sequential modules: an attention module, a

in attention. Neurocognitive training contains three sequential modules: an attention module, a memory module, and a problem-solving module. Attention training focuses on increasing processing speed, sustaining attention, inhibiting irrelevant stimuli, and shifting attention. Memory training focuses on developing a categorizing capacity, cognitive flexibility, and the ability to abstract and recall the “gist” or main point from information to be remembered. Finally, problem-solving training

the “gist” or main point from information to be remembered. Finally, problem-solving training focuses on improving foresightfulness and planning, reasoning, and executive functioning, and it both relies upon and reinforces the attention and memory abilities gained in previous modules. Unlike other cognitive remediation programs, participants in CET receive neurocognitive training in pairs, which affords opportunities for socialization and to begin learning important early aspects of social

affords opportunities for socialization and to begin learning important early aspects of social cognition, such as giving support.

Neurocognitive training is facilitated by a therapist “coach” who promotes strategic thinking about how to complete a given exercise and integrates key CET concepts into the sessions, such as managing emotions, gistful processing, working memory, cognitive flexibility, and foresightfulness. After approximately 2–3 months of attention training, 3–4 participant pairs (6–8 participants) form a small social cognitive group. The emphasis of these weekly social cognitive group sessions is on

a small social cognitive group. The emphasis of these weekly social cognitive group sessions is on enhancing social comfort and the abilities needed for effective socialization, interpersonal interactions, and successful adjustment to adult life. All group sessions follow a highly structured format that allows for spontaneity but also keeps the group process predictable and efficient. Each group session begins by distributing an agenda along with handouts for the psychoeducational lecture for

session begins by distributing an agenda along with handouts for the psychoeducational lecture for the day. Participants are then asked to present their homework assignment based on the previous week’s lecture, and homework presentations are chaired by one of the group members, who asks the members to volunteer to present their homework. The chairperson role is designed to facilitate working memory, organization, and cognitive flexibility. After the homework presentation is finished, select

memory, organization, and cognitive flexibility. After the homework presentation is finished, select participants complete an in-group cognitive exercise designed to enhance social cognition. Exercises are usually performed in pairs and require participants to practice the social cognitive abilities they are learning in the group, such as perspective-taking, social context appraisal, gistfulness, and reading nonverbal cues. The group members who are not actively completing the exercise are asked

reading nonverbal cues. The group members who are not actively completing the exercise are asked to give feedback to their peers on their performance. This important task promotes observational skills and engagement for group members and provides the opportunity to give support and practice giving appropriate feedback in an organized, constructive way. Finally, a psychoeducational lecture is given on a new topic on social cognition, and homework is assigned to facilitate application outside of

on a new topic on social cognition, and homework is assigned to facilitate application outside of the group setting.

A broad number of social cognitive topics are covered throughout the 45 group sessions and include perspective-taking, emotion perception, stress management, understanding the social “gist”, giving support, reciprocity, and social context appraisal among others. The goal is to provide participants with the core social cognitive abilities they need to succeed in reaching their goals, build better relationships, and communicate and interact effectively with others. Neurocognitive training

better relationships, and communicate and interact effectively with others. Neurocognitive training proceeds concurrently throughout the time individuals are also participating in the social cognitive groups, until the completion of all attention, memory, and problem-solving computer exercises. A complete descriptions of the original treatment methods and procedures used in CET are outlined in detail in Cognitive Enhancement Therapy: the Training Manual by Hogarty and Greenwald (2006), and

detail in Cognitive Enhancement Therapy: the Training Manual by Hogarty and Greenwald (2006), and adaptations specific to adults with autism spectrum disorders are forthcoming in a supplement to this treatment manual.

Efficacy Information The development of CET for individuals with schizophrenia was supported by the National Institute of Mental Health, and primary data regarding its efficacy comes from two randomized controlled trials with individuals with schizophrenia and schizoaffective disorder. Effects of CET on neurocognition and social cognition in both of these studies were large (range of d ¼ 0.58–3.09), and effects on functional outcome and social adjustment were also highly significant and large

and effects on functional outcome and social adjustment were also highly significant and large (range of d ¼ 1.40 to 2.59) (Hogarty et al. 2004; Eack et al. 2009). Further, mediator analyses from these studies indicated that the benefits CET had on cognition were significant contributors to the improved adjustment and adaptive function of participants (Hogarty et al. 2006; Eack et al. 2011). Evidence of the durability of these effects have also been positive, with studies indicating that the

of the durability of these effects have also been positive, with studies indicating that the effects of CET on cognition and functioning can be maintained for at least 1 year posttreatment (Hogarty et al. 2006; Eack et al. 2010a). Finally, evidence has indicated that CET has a direct effect on the brain, in that it can protect against gray matter loss and even result in increased levels of gray matter in social cognitive brain networks when applied in the early course of schizophrenia (Eack et

in social cognitive brain networks when applied in the early course of schizophrenia (Eack et al. 2010).

Efficacy information on CET effects specific to the autism population is now available, with the completion of the first randomized controlled trial of this intervention in verbal adults with autism spectrum disorder supported by National Institute of Mental Health, Department of Defense, and Autism Speaks (Eack et al. 2018). This 18-month clinical trial randomized 54 verbal adults with autism with IQ   80 to either CET or an enriched supportive therapy (EST) comparison condition that focused on

IQ   80 to either CET or an enriched supportive therapy (EST) comparison condition that focused on education about autism and stress and condition management. The study included an active comparison condition to CET for two reasons. First, the availability of psychological treatments in routine care for adults with autism is quite limited, reducing the feasibility of a study of CET compared to “treatment as usual.” Second, EST includes many of the nonspecific components of CET (e.g., provision

as usual.” Second, EST includes many of the nonspecific components of CET (e.g., provision of a skilled emphatic therapist, psychoeducation), and comparison of CET to EST provided a particularly stringent test as to whether the specific cognitive training components in CET could result in improved cognitive and functional outcomes in adults with autism.

Results from this first controlled trial indicated significant and medium-sized (d ¼ 0.46, p ¼ 0.013) effects on non-social cognition favoring CET compared to EST, particularly in speed of processing, which evidence indicates is one the most affected areas of non-social cognitive function in the condition (Haigh et al. 2018; Velikonja et al. 2019). Effect sizes of CET on non-social cognition over 18 months were medium-to-large in magnitude (d ¼ 0.76) compared to EST (d ¼ 0.31), which also showed

months were medium-to-large in magnitude (d ¼ 0.76) compared to EST (d ¼ 0.31), which also showed some benefits to non-social information processing. With regard to social cognition, individuals treated with CET demonstrated large improvements (d ¼ 0.89), particularly in blind-rated clinical assessments of social cognitive behaviors, as well as domains of emotion perception and management. Interestingly and unexpectedly, individuals treated with EST also evidenced significant and medium-to-large

and unexpectedly, individuals treated with EST also evidenced significant and medium-to-large levels of improvement in social cognition (d ¼ 0.62) after 18 months of treatment. Differential effects on social cognition clearly favored CET by mid-treatment (9 months) (d ¼ 0.58, p ¼ 0.020); however the advantage of CET compared to EST for improving social cognition was not maintained by the completion of 18 months of treatment (d ¼ 0.27, p ¼ 0.298). Such findings were not the result of a loss of

of 18 months of treatment (d ¼ 0.27, p ¼ 0.298). Such findings were not the result of a loss of social cognitive gains in those treated with CET but a larger than expected improvement in this domain during the second half of treatment among individuals receiving EST. We concluded that while CET appears uniquely effective for addressing non-social cognitive impairments in adult autism, both interventions may have important benefits to social cognition, with CET providing a more rapid treatment

may have important benefits to social cognition, with CET providing a more rapid treatment response in this domain than EST.

The cognitive gains associated with CET observed in this first trial were hypothesized as key mechanisms for supporting improved functional outcomes in verbal adults with autism spectrum disorder. When examining the efficacy of CET compared to EST on functional outcomes, clear gains in non-sheltered competitive employment were observed in participants treated with CET that were not evident in those who received EST. Overall, individuals receiving CET were nearly 6 times more likely to become

who received EST. Overall, individuals receiving CET were nearly 6 times more likely to become competitively employed during the 18-month trial than their EST counterparts (OR ¼ 6.21, p ¼ 0.005), indicating the benefits of cognitive rehabilitation to important functional outcomes in this population. Furthermore, improved social and non-social cognition significantly predicted competitive employment outcomes and were partial mediators of the impact of CET on employment, supporting hypotheses that

outcomes and were partial mediators of the impact of CET on employment, supporting hypotheses that the treatment of cognitive impairments in adults with autism is a productive avenue for enhancing functioning and reducing disability. Given the initial nature of this first trial and its modest sample size, a randomized confirmatory efficacy trial supported by the National Institute of Mental Health is now underway with a larger set of participants to determine whether these effects can be

Health is now underway with a larger set of participants to determine whether these effects can be replicated. In addition, follow-up studies 1 year after treatment are being conducted to determine what gains can be maintained once treatment is completed.

Outcome Measurement Outcome assessment is important in CET to guide clinician behavior and provide feedback on success to participants. Several outcome measures are included in the CET programs that are easy to complete by participants and clinicians and provide a sensitive metric upon which to gauge progress. The attention training software utilized in CET developed by Ben-Yishay et al. (1985) contains a simple reaction time assessment of processing speed, and it is recommended that

(1985) contains a simple reaction time assessment of processing speed, and it is recommended that clinicians utilize this assessment before beginning attention training and every 9 months thereafter until the completion of treatment. Two interview-based assessments, the Social Cognition Profile and the Cognitive Styles Inventory (Hogarty et al. 2004), provide assessments of both neurocognitive and social cognitive improvement during treatment. It is recommended that these assessments be

and social cognitive improvement during treatment. It is recommended that these assessments be administered to participants prior to beginning treatment and every 9 months thereafter. These standardized assessment instruments will provide both clinicians and participants with a greater understanding of the cognitive strengths and limitations of the participant and his/her degree of improvement during CET.

For clinics and programs that have access to neuropsychological testing materials, several standardized assessments are useful, but not required for judging progress in CET. These include the revised Wechsler Memory Scale, Wisconsin Card Sorting Test, Trails B, and the California Verbal Learning Test. In addition, the Mayer-Salovey-Caruso Emotional Intelligence Test (Mayer et al. 2003) has proven to be an effective assessment of components of social cognition during CET and is

2003) has proven to be an effective assessment of components of social cognition during CET and is self-administered through a computer. Information from these assessments can be useful for treatment planning, as well as examining progress.

Qualifications of Treatment Providers Qualified providers of CET are not limited to a single profession. In research studies on CET, individuals from many different backgrounds and disciplines have been successfully trained to provide the treatment. This has included social workers, psychologists, and psychiatric clinical nurse specialists, all of which make up the primary workforce who serve adults with autism spectrum disorders. The critical qualifications for providing CET include education

with autism spectrum disorders. The critical qualifications for providing CET include education in a human service profession (preferably at a master’s level), experience (2 or more years) in the treatment of verbal adults with autism or similar conditions, a willingness to resist a traditional psychotherapeutic approach, and an eagerness and commitment to learn new approaches to intervention.

The methods and intervention approaches employed in CET are novel and likely to be different from any treatment approach clinicians have provided before to adults with autism. Consequently, beyond having the requisite educational and work experience in order to be knowledgeable about the treatment of autism, it is of utmost importance that potential providers are open and willing to learn a new approach. Some providers become comfortable with certain techniques and have considerable difficulty

approach. Some providers become comfortable with certain techniques and have considerable difficulty when a new treatment requires them to deviate from their usual practices. In this way, effective CET clinicians must be cognitively flexible themselves, so that they can open up to new ways to help persons with autism. Clinicians that are uncomfortable with deviating from a traditional psychotherapeutic stance where they provide the instruction and advice to solve the problems for their patients

stance where they provide the instruction and advice to solve the problems for their patients (instead of helping the individual learn to solve their own problems) will have difficulty becoming an effective CET coach. Finally, it should be noted that a qualified clinician is not enough to provide CET. Group sessions are conducted with a minimum of two qualified clinicians, which significantly enhances the process by introducing a greater diversity of ideas and insights into how to help

enhances the process by introducing a greater diversity of ideas and insights into how to help participants. In addition, the feasibility of implementing CET without strong administrative and supervisory support is limited. As with all successful intervention programs, a commitment is required by clinicians and the agency to invest the necessary resources, training, and time to provide this comprehensive approach. The training required to learn CET is extensive and ongoing, making a strong

approach. The training required to learn CET is extensive and ongoing, making a strong commitment from the agency essential to successful implementation. In summary, CET is an innovative intervention that holds promise for improving adaptive function and lives of verbal adults with autism spectrum disorders.

Cognitive Flexibility  Synonyms Cognitive shifting; Mental flexibility; Set shifting  Definition Cognitive flexibility refers to the cognitive function of adaptively shifting mental actions and behaviors based on feedback from the environment. It is a dimension of executive functioning, which is considered to be impaired in many people with autism spectrum disorders (ASD). Executive functioning refers to a broad category of complex or higher-order cognitive skills that is crucial for organizing

to a broad category of complex or higher-order cognitive skills that is crucial for organizing and selecting relevant information, planning responses, and executing actions. Compromised cognitive flexibility in ASD may contribute to challenges with appropriately adapting to changes in interpersonal and environmental demands (e.g., social situations). Difficulty switching problem-solving strategies or adapting responses in the face of situational changes characterize the experiences of people with

adapting responses in the face of situational changes characterize the experiences of people with ASD and can be explained by impairments in cognitive flexibility. Some evidence suggests that cognitive flexibility predicts social outcomes in ASD. Better performance on cognitive flexibility measures alone predicted greater improvement in scores of social competence over time in high-functioning adolescents and adults with ASD (e.g., Berger et al. 2003). Studies assessing cognitive flexibility and

and adults with ASD (e.g., Berger et al. 2003). Studies assessing cognitive flexibility and related functions in ASD have found moderately robust findings of impaired flexibility, but not without mixed results. Card sorting tests, such as the Wisconsin Card Sorting Test (WCST; Heaton et al. 1993), are one type of neuropsychological assessment that have been sensitive to measuring aspects of executive functioning, particularly cognitive flexibility. Several aspects of impaired cognitive flexibility

functioning, particularly cognitive flexibility. Several aspects of impaired cognitive flexibility in ASD have been identified, yet these factors have yet to be uniformly observed across studies. In one study, high-functioning adolescents with ASD performed significantly poorer on the WCST in maintaining their cognitive set (a set of mental plans or rules deduced from direct feedback) relative to a typically developing control group (Kaland et al. 2008). No other significant differences in

to a typically developing control group (Kaland et al. 2008). No other significant differences in performance such as perseverative errors (repeatedly using a previously successful strategy despite feedback that it is no longer effective) were observed. Other studies using the WCST have demonstrated that perseverative errors are more common in individuals with ASD (e.g., Shu et al. 2001) as well as poorer performance on the total number of errors, completion of categories, and number of trials

as poorer performance on the total number of errors, completion of categories, and number of trials required to complete a category relative to control groups (e.g., Pennington and Ozonoff 1996). A lack of uniform findings indicates that cognitive flexibility is complex and multidimensional. It is likely affected by various factors related to cognitive and executive functioning, explaining the variations in cognitive flexibility observed across the ASD population.

Cognitive Skills  Definition The term “cognition” refers to mental processes or forms of information processing. These processes include attention, memory, learning, decision making, reasoning, and problem solving. In the study of autism, a distinction often is drawn between social and/or nonsocial forms of cognition given the presumed centrality of social deficits to the disorder. Some also consider language to be a cognitive domain. The focus of this entry, however, is on cognition that is

language to be a cognitive domain. The focus of this entry, however, is on cognition that is not explicitly social or language related. For more extensive discussions of social cognition and language, the reader is referred to other definitions in this encyclopedia.

Historical Background Cognition is a term that became very popular in psychology with the onset of the “cognitive revolution” in the 1950s. This “revolution” resulted from the advent and use of computers. Academic psychology borrowed computer and artificial intelligence information processing concepts and used them to derive testable hypotheses related to human thought processes. This new field, “cognitive psychology,” had a large impact on the larger discipline of psychology and replaced

“cognitive psychology,” had a large impact on the larger discipline of psychology and replaced behaviorism as the dominant paradigm. Rapidly advancing fields of neuroscience, social psychology, and developmental psychology also began to influence the larger field of psychology. This resulted in the genesis of cognitive neuroscience, which seeks to understand the neural and other biological mechanisms underlying thought; social cognitive neuroscience, which employs findings from social psychology

underlying thought; social cognitive neuroscience, which employs findings from social psychology and attempts to understand their neurobiology; and developmental cognitive neuroscience, which examines the neurobiology of development in an effort to explain typical and atypical growth and development.

Current Knowledge Many researchers, writing from different perspectives, have arrived at the conclusion that individuals with ASD exhibit a curious set of cognitive strengths and challenges. For example, Minshew and colleagues (Minshew et al. 1997) articulated the point of view that ASD involves spared simple information processing in domains of motor functioning, memory, language, and reasoning, with selective impairment in complex information processing, not involving visual-spatial

with selective impairment in complex information processing, not involving visual-spatial processing, across these domains. They went on to argue that “this profile is not consistent with a single primary deficit, but with a multiple primary deficit model in which the deficit pattern within and across domains is reflective of the complexity of the information processing demands. This neuropsychological profile is furthermore consistent with the neurophysiologic characterization of autism as a late

profile is furthermore consistent with the neurophysiologic characterization of autism as a late information processing disorder with sparing of early information processing.” This way of conceptualizing autism also has been extended to the neuroscience of autism. Here, autism has been portrayed as a disorder involving reduced functional connectivity (synchronous activity) between brain regions and neural circuits (Just et al. 2004), resulting in reduced synchrony among cortical regions

and neural circuits (Just et al. 2004), resulting in reduced synchrony among cortical regions supporting higher cognition. Three important topics in higher cognition in ASD are discussed below.

Cognitive Level and IQ in ASD First, it is important to provide background about cognitive ability level in ASD because it profoundly influences performance in areas of higher cognition, as well as multiple areas of functioning. The study of cognitive abilities in ASD also has attracted considerable research because the patterning of intellectual strengths and challenges in persons with ASD may be very different than that present in typically developing individuals, and this has clear

ASD may be very different than that present in typically developing individuals, and this has clear implications for education and intervention strategies. One of the challenges inherent in working with individuals with ASD is that they display a very wide range of cognitive ability levels ranging from intellectual disability to intellectual giftedness. Diagnostic conventions have changed considerably over the last 20 years, and while it once was believe that 75% of affected individuals

considerably over the last 20 years, and while it once was believe that 75% of affected individuals displayed intellectual disability, this figure now has dropped to about 40% according to a Centers for Disease Control publication in 2009 (Rice 2009). Twenty years ago, the most common finding was that individuals with ASD had an IQ profile with stronger visuospatial abilities (as assessed by the block design subtest) than verbal (and especially comprehension subtest) abilities (Goldstein et al.

design subtest) than verbal (and especially comprehension subtest) abilities (Goldstein et al. 2008). More recently, it has been argued that those with Asperger syndrome display the opposite profile (VIQ > PIQ) or that the intellectual profiles of those with ASD are no different than those found in the general population. These discrepancies may in part be explained by variations in the ages of samples and how they were ascertained. Recently, it has been demonstrated that persons with autism and

and how they were ascertained. Recently, it has been demonstrated that persons with autism and Asperger syndrome perform better on intelligence tests that assess their perceptual and especially visual reasoning abilities (Raven’s Progressive Matrices) versus more language-based tests like the Wechsler scales (Dawson et al. 2007).

Attention in Autism There is an extensive research literature suggesting that individuals with autism exhibit atypical patterns of attending to their environment. They may be poor at allocating attention to relevant visual stimuli, and they are at times overly selective and focused in what they attend to. They can find it hard to disengage from what they are viewing. They may have problems switching or redirecting attention between divided streams of information (i.e., visual and auditory

or redirecting attention between divided streams of information (i.e., visual and auditory stimuli). They may not pay attention to novel stimuli the same way as typically developing persons. This unusual attention processing may affect their development and learning and produce pattern of early emerging but persistent socio-communicative deficits (Dawson et al. 1998).

There are several different conceptual models of attention that have been used to study autism. The first was developed by Mirsky et al. (1991). According to this model, which was derived using a factor analysis (mathematical grouping by common features) of commonly used tests, components of attention include encoding (to receive and interpret incoming information), focusing and executing (to focus and perform a task in the face of distraction), sustaining (to maintain attention over time), and

and perform a task in the face of distraction), sustaining (to maintain attention over time), and shifting (to adaptively shift the focus of attention). One well-known study in this area found that persons with ASD only showed deficits in focusing and executing and shifting (Goldstein, Johnson, and Minshew 2001). According to another prominent view (Posner et al. 1984), attention is thought to have three components, which each is subserved by different neural networks and their interactions. The

three components, which each is subserved by different neural networks and their interactions. The first of these, alerting, involves becoming more sensitive to incoming information on either a tonic (steady state) or episodic (in response to an event) basis. This network selects information from sensory input. The second component in this model is orienting. It is similar to attention shifting (see Allen and Courchesne 2001). The third component of attention is executive control, which is a

(see Allen and Courchesne 2001). The third component of attention is executive control, which is a multidimensional system responsible for inhibition, planning, conflict monitoring, and cognitive flexibility. Similar to Goldstein, Johnson, and Minshew (2001), a recent study using the Posner model found that orienting was impaired in individuals with ASD (Keehn et al. 2010).

Learning and Memory in Autism Memory in autism is characterized by several unique features (see Boucher and Bowler 2008 for a recent volume on memory in autism). Individuals with cognitive ability levels in at least the average range tend to be as good as typically developing individuals on short-term memory tasks, including those involving auditory, visual, and motor stimuli. Across all functioning levels, they also demonstrate largely preserved non-declarative (implicit) memory (memory that

levels, they also demonstrate largely preserved non-declarative (implicit) memory (memory that occurs largely outside of conscious awareness). They also are unimpaired at memory tasks involving simple cued recall, where cues are provided to them. However, they are inefficient at spontaneously using contextual cues to help them remember and do not naturally use memory strategies that would leverage these cues. For example, they may produce fewer “false” memories on tasks that try to trick the

these cues. For example, they may produce fewer “false” memories on tasks that try to trick the participant into remembering nonpresented materials that are semantically similar to presented ones because they are not distracted by such lures. They also appear to lack the facilitated memory for materials related to themselves (self-referenced memory), which is present in typically developing individuals. They also show deficits in memory for information about emotions.

Individuals with ASDs also display a curious pattern of learning strengths and challenges. Their lower level learning involving contingency-shaped procedures, implicit information, single items of information/facts, and habits is intact. The effectiveness of interventions premised on operant conditioning such as applied behavior analysis (ABA), the ability to memorize large bodies of facts about special interests, and the preference for routines and sameness all constitute evidence of their

special interests, and the preference for routines and sameness all constitute evidence of their bias toward lower level learning. However, individuals with ASDs show deficits in higher level learning that relies on abstract goals and reasoning and on the efficient transfer of learning to new situations and problems (known as generalization). In order to generalize, organisms must make and keep in mind relational links between memory traces that share common elements. This permits the transfer of

relational links between memory traces that share common elements. This permits the transfer of what has been learned to novel contexts with similar but largely different features. Individuals with ASDs are inefficient learners. They exhibit excessively narrow stimulus discrimination at the expense of generalization (O’Riordan and Plaisted 2001). They often focus on idiosyncratic and overly selective aspects of stimuli. They fail to recognize and/or maintain online important cues signaling

aspects of stimuli. They fail to recognize and/or maintain online important cues signaling similarities across every day events and settings. Consequently, they are unable to leverage what they already know to navigate new situations. These deficits likely underlie the characteristic academic, social, and adaptive functioning problems they face.

Reasoning and Problem Solving in Autism Abstract reasoning is a form of higher cognition that requires the mental process of considering and manipulating information about events, objects, and concepts not in the immediate environment. Abstract reasoning is thought to involve both the ability to identify concepts (i.e., to recognize underlying category attributes so as to better understand them) and the ability to form concepts based on these discriminations. This latter function has been

and the ability to form concepts based on these discriminations. This latter function has been referred to as generativity.

Concept identification abilities come online during the first year of life in typical development, and children with autism appear to acquire simple classification abilities involving the physical world (e.g., the ability to sort objects) similarly to children with other developmental delays. However, it is unclear whether individuals with autism can categorize based on more representational and abstract criteria. Some have found that lower functioning children have difficulty with sorting tasks

criteria. Some have found that lower functioning children have difficulty with sorting tasks that involve abstract categories, though older higher functioning individuals do not appear to have these difficulties. In contrast to concept identification, concept formation involves an “open-field” situation in which the individual must initiate behaviors to solve a problem. This type of initiation, or “generativity,” is recognized as a deficit area for children (Bishop and Norbury 2005) and adults

or “generativity,” is recognized as a deficit area for children (Bishop and Norbury 2005) and adults (Turner 1999) with HFASD. Concept formation, but not concept identification, as assessed by the Goldstein-Scheerer object sorting task, has been found to differentiate children with HFASD from others. Deficits in concept formation may limit the ability of individuals with HFASD to generate cognitive schemas that promote the efficient organization of social and nonsocial information. Impairments in

schemas that promote the efficient organization of social and nonsocial information. Impairments in the ability to create organizing schemas for initiating new social behaviors and routines (i.e., meeting new people, entering different and unstructured social situations, and/or conducting reciprocal conversations) would greatly disrupt daily social functioning. Similarly, the inability to conceptualize, represent, and integrate multiple perspectives would produce deficits in interpersonal

represent, and integrate multiple perspectives would produce deficits in interpersonal relationships.

The replicated finding that generativity is predictive of play quality in young children supports these assertions. Several studies have used tasks similar to the guessing game “20 questions,” where players must guess the identity of items (persons, places, or things) in less than 20 questions. To perform well, they must ask efficient questions that narrow the possible guesses on each try. Individuals with ASD perform poorly on this task, and their task performance reliably distinguishes them

with ASD perform poorly on this task, and their task performance reliably distinguishes them from typically developing individuals. On this type of task, they tend to use strategies that eliminate single items versus groups of items. It has been suggested that this reflects a fundamental problem in concept formation – the spontaneous generation of categories to support goal-directed cognitive processing. These problems appear to be related somewhat to the executive function deficits of affected

These problems appear to be related somewhat to the executive function deficits of affected individuals.

Finally, following the study described above that high-functioning persons with autism perform better on the intelligence tests that involve more visuospatial versus verbal reasoning – the Raven’s Progressive Matrices test (Dawson et al. 2007) – there now have been several that show that aspects of conditional and analogical reasoning are relatively preserved in persons with ASDs.

Future Directions Cognition is a very important topic in ASD research because it appears that the disorders involve unique strengths and challenges in this area, which are integrally related to educational, social, and behavioral functioning. A better understanding of cognitive style in ASD would produce important information that helps us understand the biological basis of the disorders and what to do to help those with them to achieve their human potential.

Some interesting areas for future research include: 1.  More extensive use of evoked response potential studies which are particularly well suited to studying attention. These can be coupled with imaging studies to learn more about the neural substrates of higher cognition problems and what to do to help those with them.

2.  The Raven’s Progressive Matrices finding outlines above are intriguing and point to the clear strengths of persons with ASD. We need more research to better elaborate such strengths and how they can be harnessed in the service of educational strategy development and vocational training.

3.  The study of development of cognition through the lifespan in persons with ASD is in its infancy. The field is only now publishing findings about cognitive control in older adulthood. More studies are needed that cover the full range of cognitive abilities in toddlers, children, adolescents and adults with ASD.

4.  There have been virtually no studies of decision making in persons with ASD. This is an important gap in knowledge, given that such these would be useful to help with the transition to adulthood.
5.  More learning studies are needed to examine the neural substrates of learning in persons with ASD. These will help provide an evidence base for ABA and may teach us about effective strategies for helping persons with ASD to overcome their deficits in generalization.

Cohen Syndrome  Definition Cohen syndrome (Mendelian Inheritance in Man [MIM 216550]) is an autosomal recessive disorder which was first described in 1973 by Cohen and coworkers (Cohen et al. 1973). The first patients studied with Cohen syndrome were reported to have mental retardation, microcephaly, antimongoloid slant, mild maxillary hypoplasia, short philtrum, open mouth with prominent maxillary central incisors, micrognathia, highly arched narrow palate, crowded teeth, hypotonia, obesity,

central incisors, micrognathia, highly arched narrow palate, crowded teeth, hypotonia, obesity, narrow hands and feet, tapering extremities, cubitus valgus, genua valga, lumbar lordosis, mild thoracic scoliosis, and hyperextensibility of the joints. Subsequent to this first report, there have been descriptions in the literature of more than 100 patients suggested to have Cohen syndrome.

Historical Background History In 1968 and 1972, Dr. Michael Cohen and his collaborators from the United States observed two sibs and a third patient, respectively, with a previously unrecognized pattern of abnormalities. In 1973, they diagnosed these patients with a newly recognized syndrome (Cohen et al. 1973). In another report, Carey and Hall established Cohen syndrome as a clinical entity by presenting four new patients with similar findings (Carey and Hall 1978). Since then, a large number

presenting four new patients with similar findings (Carey and Hall 1978). Since then, a large number of patients with Cohen syndrome have been found in Finland. Six of these were reported in 1984 by Norio et al. on a small group of Finnish patients with Cohen syndrome, presenting microcephaly, neutropenia, and specific ophthalmic abnormalities, namely, high myopia and retinal dystrophy (Norio et al. 1984). Recently, a novel disease-causing gene (COH1; chromosome 8q22) was identified in this

et al. 1984). Recently, a novel disease-causing gene (COH1; chromosome 8q22) was identified in this interval which encodes a transmembrane protein presumably involved in vesicle-mediated sorting and intracellular protein transport (Kolehmainen et al. 2003).

Genetics and Etiology Many of the reported patients have been sibs, with healthy parents. In five Finnish families, the parents were consanguineous. Thus, Cohen syndrome is considered to be an autosomal recessive disorder. In Finland, linkage studies were performed with the assumption of autosomal recessive inheritance, and the gene was mapped to the long arm of chromosome 8 (Tahvanainen et al. 1994). The gene responsible for Cohen syndrome, VPS13B (MIM# 607817), also known as COH1, is located

The gene responsible for Cohen syndrome, VPS13B (MIM# 607817), also known as COH1, is located on chromosome 8q22 (Kolehmainen et al. 2003). VPS13B is a large gene: it spans a region of 864 kb and has 62 exons, with putative transmembrane domains and functional motifs specific for intracellular vesicle-mediated protein sorting (VPS) (Kolehmainen et al. 2003; Seifert et al. 2009; Velayos-Baeza et al. 2004). The function of the protein encoded by COH1 is mostly unknown. Although in the majority of

2004). The function of the protein encoded by COH1 is mostly unknown. Although in the majority of patients clinically diagnosed as having Cohen syndrome, homozygous or compound heterozygous mutations in VPS13B are identified, in about 20–30%, only one heterozygous mutation is detected, and in 12%, no mutations are found (Kolehmainen et al. 2004; Seifert et al. 2009). Overall, more than 50 COH1 mutations have been reported in association with Cohen syndrome. Most are termination mutations and

mutations have been reported in association with Cohen syndrome. Most are termination mutations and predicted to result in a null allele, while missense mutations and larger deletions are less common (Seifert et al. 2006).

For these patients, the underlying cause remains uncertain. The mouse homologue of COH1 is widely expressed in neurons of the postnatal and adult brain suggesting a role in neuronal differentiation (Mochida et al. 2004). This suggests that COH1 primarily functions in postmitotic cells, which may be the reason for the postnatal microcephaly seen in Cohen syndrome (Seifert et al. 2006).

Incidence and Prevalence Cohen syndrome is a rare autosomal recessive disorder with incidence rates (based on Finnish data) estimated as 1 per 105,000 (Kivitie-Kallio et al. 1999). To date over 100 reports of individuals with Cohen Syndrome have been published, but most are single case or small group studies, and relatively few involve large samples. Patients have been identified worldwide but are overrepresented in the Finnish population.

Diagnosis Establishing the clinical diagnosis of Cohen syndrome has historically been challenging. The first patients studied with Cohen syndrome were reported to have mental retardation, microcephaly, antimongoloid slant, mild maxillary hypoplasia, short philtrum, open mouth with prominent maxillary central incisors, micrognathia, highly arched narrow palate, crowded teeth, hypotonia, obesity, narrow hands and feet, tapering extremities, cubitus valgus, genua valga, lumbar lordosis, mild

narrow hands and feet, tapering extremities, cubitus valgus, genua valga, lumbar lordosis, mild thoracic scoliosis, and hyperextensibility of the joints.

The clinical diagnosis of Cohen syndrome is difficult to make in infancy. At infancy, the characteristic facial features are difficult to recognize, but they become more and more evident by 5–10 years of age and remain recognizable for decades but tend to lose their most characteristic appearance after middle age (Kivitie-Kallio et al. 2001). Neonatal feeding problems are common. Babies are often hypotonic during the first months of life.

The initial description of Cohen syndrome features included obesity, mental retardation, hypotonia, narrow hands and feet, and a distinctive craniofacial appearance (Cohen et al. 1973). Broad phenotypic variability in subsequent patients diagnosed with Cohen syndrome has created significant confusion as to diagnostic accuracy (Chandler and Clayton-Smith 2002; Friedman and Sack 1982). The characteristic facial appearance, developmental delay, myopia, narrow hands with slender and tapering

facial appearance, developmental delay, myopia, narrow hands with slender and tapering fingers, narrow feet, and generalized joint hyperextensibility were present in all patients with Cohen syndrome investigated for their study. However, microcephaly, short stature, truncal obesity, neutropenia, and retinopathy were not present in some of the patients.

Greater clinical variability is observed in case reports of Cohen syndrome from outside Finland. A comparison of features among different Cohen syndrome populations with shared linkage to the COH1 locus or known COH1 gene mutations may help better define criteria for which to suspect Cohen syndrome.

Although the various physical abnormalities associated with Cohen syndrome have been widely documented, there is still a lack of consistency in diagnosis. The facial features are often a first indication of a diagnostic pathway in the examination of patients presenting with developmental delay.
 In 2001, Kivitie-Kallio and Norio proposed the following features as essential for the diagnosis of Cohen syndrome:

1.  Nonprogressive mental retardation, motor clumsiness, and microcephaly 2.  Typical facial features, including wave-shaped eyelids, short philtrum, thick hair, and low hairline

3.  Childhood hypotonia and joint hyperextensibility 4.  Retinochoroidal dystrophy and myopia by 5 years of age 5.  Periods of isolated neutropenia  In 2003, Chandler et al. linked the diagnosis of Cohen syndrome to the presence of at least two of the following major criteria in a child with significant learning difficulties:

1.  Facial gestalt, characterized by thick hair, eyebrows, and eyelashes; wave-shaped, downward slanting palpebral fissures; prominent, beak-shaped nose; short, upturned philtrum with grimacing expression on smiling

2.  Pigmentary retinopathy 3.  Neutropenia (defined as <2   109/L)  In association with a number of less specific but supportive criteria, namely: 1.  Early-onset, progressive myopia 2.  Microcephaly 3.  Truncal obesity with slender extremities 4.  Joint hyperextensibility  | Criterion Type | Description | |---|---| | Major signs | Retinal dystrophy appearing by midchildhood | | Major signs | Progressive high myopia | | Major signs | Acquired microcephaly | | Major signs | Nonprogressive mental

high myopia | | Major signs | Acquired microcephaly | | Major signs | Nonprogressive mental retardation, global developmental delay | | Major signs | Hypotonia | | Major signs | Joint hyperextensibility | | Minor signs | Truncal obesity appearing in or after midchildhood | | Minor signs | Small or narrow hands and feet | | Minor signs | Short stature | | Minor signs | Friendly disposition | | Minor signs | Noncyclic granulocytopenia or low total white blood cell count with or without aphthous

signs | Noncyclic granulocytopenia or low total white blood cell count with or without aphthous ulcers |

Current Knowledge Differential Diagnosis Conditions to be considered in the differential diagnosis of the Cohen syndrome include the Prader-Willi syndrome, Rubinstein-Taybi syndrome, Borjeson-Forssman-Lehmann syndrome, Bardet-Biedl syndrome, and Mirhosseini-Holmes-Walton syndrome. Mirhosseini-Holmes-Walton syndrome may be the same syndrome as Cohen syndrome (Steinlein et al. 1991). However, the clinical phenotype of these conditions is quite distinct and very different from that of Cohen

the clinical phenotype of these conditions is quite distinct and very different from that of Cohen syndrome. Deafness, diabetes mellitus, and cardiomyopathy are characteristic of Alström syndrome while the patients are usually of normal intellect (Michaud et al. 1996). Postaxial polydactyly and renal dysplasia are diagnostic features of Bardet-Biedl syndrome (Beales et al. 1997). Prader-Willi syndrome is characterized by severe hypotonia and feeding difficulties in early infancy, followed in

syndrome is characterized by severe hypotonia and feeding difficulties in early infancy, followed in later infancy or early childhood by excessive eating and obesity.

Specific Characteristics Cohen syndrome has been proposed to be subdivided into two types (i.e., Finnish type and Jewish type) (Kondo et al. 1990). Phenotypes common to both types are nonprogressive psychomotor retardation, microcephaly, characteristic facial features, retinal dystrophy, and intermittent neutropenia (Friedman and Sack 1982; Sack and Friedman 1986). The characteristic facial features include high-arched or wave-shaped eyelids, a short philtrum, thick hair, and low hairline.

include high-arched or wave-shaped eyelids, a short philtrum, thick hair, and low hairline. Both types are further classified by the presence (Finnish type) or absence (Jewish type) of retinal anomalies (Kondo et al. 1990).

Neurological Intracranial abnormalities have been reported in Cohen syndrome patients; however, the findings are inconsistent. Microcephaly, considered by some authors (Fryns et al. 1996; Norio et al. 1984) as a typical and early symptom of the syndrome, was mildly evident from the neonatal period in our two patients and, apart from mild hypotonia, was not associated with major neurological dysfunction (Balestrazzi et al. 1980; Carey and Hall 1978).

Hypotonia can be either of central origin or related to a possible connective tissue disorder (Norio et al. 1984). All patients learn to walk by the age of 2   5 years. The incidence of seizures in Cohen syndrome is approximately 6% (North et al. 1985). EEG abnormalities in Cohen syndrome have also been reported in two cases by Goecke, Majewski, Kauther, and Sterzel (1982). Except for oppiness, no signs of muscle disease are found.

Brain MRI is considered normal, although corpus callosum is relatively enlarged. Previous studies on MRI findings in Cohen patients disclosed no focal signal intensity alterations in the brain and no alterations between the gray and white matter (Kivitie-Kallio et al. 2001). Furthermore, some authors reported in some patients with Cohen syndrome a relatively enlarged corpus callosum, thus suggesting to consider this a possible hallmark of the syndrome. An increased diameter of the body of the

to consider this a possible hallmark of the syndrome. An increased diameter of the body of the corpus callosum was described in a group of 15 Finnish Cohen syndrome patients (Kivitie-Kallio and Norio 2001), a clinical feature not reported by other large studies of non-Finnish Cohen syndrome patients (Hennies et al. 2004; Kolehmainen et al. 2004; Seifert et al. 2006). All authors also proposed that though MRI alone cannot confirm the diagnosis and no definite measurements can be recommended for

though MRI alone cannot confirm the diagnosis and no definite measurements can be recommended for clinical use, any clinical suspicion of Cohen syndrome would have been reinforced by the MRI finding of an enlarged corpus callosum in a microcephalic head and normal signal intensities of gray and white matter (Kivitie-Kallio et al. 2001).

Craniofacial Craniofacial features are often essential in syndrome diagnosis. Suspicion of Cohen syndrome usually arises when a mentally retarded child has facial features considered typical of this syndrome. Reduced head size (microcephaly), short philtrum, and small cranial base dimensions are essential features in Cohen syndrome. In addition, most patients had forward-inclined upper incisors and maxillary prognathia (Carey and Hall 1978; Ozturk and Weber 1991). Head circumferences of Cohen

and maxillary prognathia (Carey and Hall 1978; Ozturk and Weber 1991). Head circumferences of Cohen subjects were very small, in the order of mean values for 5–6-year-old Finnish children and at the level of  4 SD in Finnish head circumference standards (Sorva et al. 1984).

Other craniofacial features, such as antimongoloid slant of the eyelids, high-arched or wave-shaped eyelids, long and thick eyebrows, prominent root of nose, short philtrum, prominent upper central incisors, open mouth appearance, maxillary hypoplasia, high and narrow palate, and mandibular micrognathia, have been described (Goecke et al. 1982; Kondo et al. 1990; Warburg et al. 1990). Despite variability in the facial appearance, several specific features can be identified in patients from

variability in the facial appearance, several specific features can be identified in patients from different countries. Facial features also seem to differ between populations. Finnish Cohen syndrome patients (81–100%) are described as having a distinctive facial appearance including wave-shaped eyelids, thick and high-arched eyebrows, long eyelashes, thick hair, low hairline, high nasal bridge, flat philtrum, short upper lip, prominent and broad upper central incisors, open mouth, and

bridge, flat philtrum, short upper lip, prominent and broad upper central incisors, open mouth, and micrognathia (Kivitie-Kallio and Norio 2001). The UK cohort was found to have a similar facial appearance as the Finnish, with the additional description of a beak-shaped nose, malar hypoplasia, and a grimace-like smile (Chandler et al. 2003).

Ophthalmologic Cohen syndrome is also characterized by progressive myopia and pigmentary retinopathy, as first described in two of three patients by Cohen et al. (1973). Other reported ophthalmic features include astigmatism, strabismus, microcornea, microphthalmia, sluggish pupillary reaction, iris atrophy and oval pupil, lens opacities, lens subluxation, optic atrophy, bull’s-eye maculopathy, coloboma of the retina or lids, ptosis, exophthalmos, poor vision acuity, nyctalopia, and constricted

of the retina or lids, ptosis, exophthalmos, poor vision acuity, nyctalopia, and constricted visual fields (Chandler and Clayton-Smith 2002; Kivitie-Kallio et al. 2000). In the UK study, however, a significant proportion of affected adults were found to develop blindness with time (Chandler et al. 2002).

Retinal dystrophy was recorded by Cohen et al. (1973) in their original description of the syndrome. The pigment deposits increase and approach the posterior pole by 35–40 years of age (Kivitie-Kallio et al. 2000). All except two children aged 2 and 5 years of the 22 Finnish patients showed signs of the pigmentary retinopathy (Kivitie-Kallio et al., 2000). Early studies of Cohen syndrome patients showed that abnormal retinal findings and electroretinographic changes were present much earlier

showed that abnormal retinal findings and electroretinographic changes were present much earlier (Chandler et al. 2002). Useful vision is usually preserved until the fourth decade (Kivitie-Kallio et al. 2000).

Retinal dystrophic changes were accompanied by early night blindness. This symptom is commonly seen in adolescents. In Cohen syndrome; ocular anomalies are also common finding including strabismus, hyperopia, astigmatism, microphthalmia, coloboma of the iris, and, most frequently, severe myopia. Recent reports also indicate involvement of the chorioretinal epithelium (Mendez et al. 1985; Norio et al., 1984). Myopia and astigmatism are common findings in Cohen syndrome. Myopia was noted in 44% of

al., 1984). Myopia and astigmatism are common findings in Cohen syndrome. Myopia was noted in 44% of patients in the literature. Myopia in Cohen syndrome is mainly refractive in type and is due to high corneal and lenticular power (Summanen et al., 2002).

Strabismus was reported in 29% of patients from literature review, with divergent strabismus being more common than convergent (Fryns et al., 1996; Warburg et al., 1990). Chandler et al. (2002) reported strabismus in up to 80% of patients. Downslanting eyelids were present in 71% of patients, while 13% were reported to have ptosis. Lens opacities were present in 13 of 22 Finnish patients (Kivitie-Kallio et al., 2000). Small cortical opacities were noted in patients as early as 15 years of age;

et al., 2000). Small cortical opacities were noted in patients as early as 15 years of age; biomicroscopy and lens opacitometry show frequent incidence of early nuclear sclerosis in patients with Cohen syndrome (Summanen et al., 2002). Older patients also had posterior subcapsular cataracts, iris atrophy, and iridophacodonesis (Kivitie-Kallio et al., 2000).

Musculoskeletal In the first report of this syndrome, all of the three patients had lumbar lordosis, mild thoracic scoliosis, cubitus valgus, genu valgum, and narrow hands and feet (Cohen et al., 1973). The hands and fingers of Cohen patients were reported to be long and slender (Kousseff, 1981; Norio et al., 1984). Since the first descriptions, the most common abnormalities reported are kyphoscoliosis and pes calcaneovalgus (Norio et al., 1984; North et al. 1985; Sack and Friedman 1986).

The metacarpophalangeal pattern profile was characteristic: all measured bones of the hands were short, the medial and especially the distal phalanges were the shortest, and the proximal phalanges were relatively the longest. Their hands and feet are small and narrow, as given in earlier reports (Cohen et al. 1973; Norio et al. 1984).

Endocrine In many previous studies, Cohen syndrome patients have been reported to be short (Carey and Hall 1978; Cohen et al. 1973; North et al. 1995). Short stature is a universal feature among the Amish and Lebanese Cohen syndrome patients, but was seen in only 40% of the Finnish Cohen syndrome patients and 64% of the UK Cohen syndrome patients. Heights were highly variable and ranged from  5.7 to  0.3 SD. Both impaired growth hormone (Massa et al. 1991) and normal growth hormone secretion

to  0.3 SD. Both impaired growth hormone (Massa et al. 1991) and normal growth hormone secretion have been reported (Carey and Hall 1978).

Mild truncal obesity was present in most patients at midchildhood, but that trait may be lacking in adult patients. Other studies have described different frequencies of truncal obesity, from 17% to 100% in patients aged  8 years (Chandler et al. 2003; Kivitie-Kallio and Norio 2001).

Puberty in Cohen syndrome patients is mostly delayed (Kivitie-Kallio et al. 1999), although they do reach sexual maturity. Delayed puberty has only been reported in the Finnish and UK cohorts (77% and 40%, respectively). No endocrine abnormalities are found. The other reported endocrinologic study showed delayed onset of puberty without luteinizing hormone and follicle-stimulating hormone deficiency in Cohen syndrome (Balestrazzi et al. 1980). However, delayed puberty might be due to the

deficiency in Cohen syndrome (Balestrazzi et al. 1980). However, delayed puberty might be due to the obesity.

Two girls, one with diabetes mellitus (Nambu et al. 1988) and the other with impaired glucose tolerance test (Fuhrmann-Rieger et al. 1984), have been noted. No abnormalities of the hypophyseal- gonadal axis were found. Kivitie-Kallio et al. found no significant endocrinologic abnormalities in their patients with Cohen syndrome; however, they did not perform an oral glucose tolerance test in their obese cases for diabetes or insulin resistance (Kivitie-Kallio et al. 1991).

Pirgon et al. reported that two patients showed the typical characteristics of Cohen syndrome with metabolic syndrome features of acanthosis nigricans, hyperlipidemia, hypertension, and marked hyperinsulinemia (Pirgon et al. 2006).

Developmental Delay and Mental Retardation All patients had a global developmental delay of variable degree and nonprogressive mental retardation. Intellectual impairment is considered to be an essential criterion by some groups of researchers (Kivitie-Kallio and Norio 2001). Mental retardation together with motor delay, due to hypotonia, is present from early life in most reported cases of Cohen syndrome. Patients are not able to attend normal school; thus, they all need special schools.

Cohen syndrome. Patients are not able to attend normal school; thus, they all need special schools. Mental retardation does not progress, and patients learn new things.

Behavioral Cohen syndrome patients usually have cheerful disposition and have not been associated with maladaptive behavior. Language is possibly lacking or severely impaired in infancy. Autistic traits are found during childhood (Fryns et al. 1996). Children and young people diagnosed with Asperger’s syndrome have significant social-communication difficulties and impaired empathy and theory of mind skills. These difficulties place them at risk of developing mental health problems, particularly

skills. These difficulties place them at risk of developing mental health problems, particularly anxiety, depression, and obsessive-compulsive disorder.

A recent study of cognitive and adaptive skills (Karpf et al. 2004) indicated that some individuals may have an IQ in the normal range, and although some research (Kivitie-Kallio et al. 1999) has reported low levels of maladaptive behavior and high levels of self-direction, responsibility, and socialization, there are also accounts of greater behavioral disturbance (Chandler et al. 2003).

Fryns et al. (1996) reported autistic behavior patterns in four patients and in a postal survey of 33 children and young adults with Cohen syndrome. Reports from a number of parents belonging to the Cohen Syndrome Support Group in the UK had indicated significant difficulties in social interaction; moreover, there were several cases of individuals with Cohen syndrome also being diagnosed as having autism. Howlin (2001) found that over half the sample had problems in social understanding,

having autism. Howlin (2001) found that over half the sample had problems in social understanding, communication, and ritualistic and stereotyped behaviors. Howlin et al. (2001) also suggested that although antisocial behaviors are rare, symptoms of anxiety are common, and in some individuals, autistic-type features are marked. Their investigation of 45 individuals with Cohen syndrome (age 4–48 years) found that although 57% of the sample were reported as showing some behavioral disturbance,

years) found that although 57% of the sample were reported as showing some behavioral disturbance, problems related mainly to anxiety and social interactions, marked antisocial behaviors were rare.

Kivitie-Kallio and her colleagues (Kivitie-Kallio and Norio 2001) noted that “inappropriate interpersonal manners, stereotyped behavior and odd mannerisms were not uncommon.” One of their cases had also shown autistic behavior as an infant, although this had improved after the age of 3 years. In the Chandler et al. study (2003) of 27 patients, 74% exhibited stereotyped behaviors, such as spinning, and five cases (18%) were observed to show autistic features (communication and social

as spinning, and five cases (18%) were observed to show autistic features (communication and social abnormalities and ritualistic and obsessive behavior).

Infections Many children with Cohen syndrome have recurrent upper respiratory infections. However, patients have no fatal infections, and granulocytes seem to rise normally in cases of severe bacterial infections. Several of the children had intermittent granulocytopenia. The granulocytopenia is usually mild, not progressive, and does not seem to be associated with recurrent infections. While intermittent granulocytopenia is frequently described in the Finnish group (100%), UK group (77%), and

granulocytopenia is frequently described in the Finnish group (100%), UK group (77%), and was present in two Amish patients evaluated for this problem with one additional child having symptomatic aphthous ulcers, it was not present in blood counts of any of the Lebanese Cohen syndrome patients. Importantly, no severe infections were reported in association with this finding.

Chandler et al. (2003) reported that stridor secondary to laryngomalacia was common in infancy among the Jewish-type Cohen syndrome patients and more significant laryngeal abnormalities were also reported, namely, laryngeal stenosis and vocal cord paralysis.

Cardiovascular Numerous cardiac abnormalities have been reported. These include mitral valve prolapse in two patients (Sack and Friedman 1980; Mehes et al. 1988). Systolic murmur (grades II–IV) in five of six patients (Norio et al. 1984) and a dilated descending aorta (Schlichtemeier et al. 1994) have also been reported. Although 30% of the patients had systolic murmurs, echo studies revealed no abnormalities in their cardiac anatomy.

Future Directions Management Early diagnosis of the syndrome is important for appropriate counseling of families with one affected child. Although most of the clinical findings are usually present from an early age, the diagnosis of Cohen syndrome is very difficult in infancy, since the typical morphological stigmata become more evident after the age of 6–8 years (Fryns et al. 1996).

Newborns have low-normal weights, and the onset of obesity is generally in midchildhood (Carey and Hall 1978; Cohen et al. 1973). Severe obesity is rare, and some patients may not develop obesity at all (Friedman and Sack 1982). The relationship among the obesity, hypotonia, and hypogonadism has not been clarified. Nutritional counseling for good long-term weight management should begin in early infancy to prevent the inappropriate weight gain that would otherwise typically begin between 12 and

to prevent the inappropriate weight gain that would otherwise typically begin between 12 and 36 months of age.

Behavioral problems should be detected early and treated appropriately with parental education/training (including consistent limit setting) and, if needed, consideration of counseling and/or psychotropic medication. Developmental assessment should be performed routinely. Physical and occupational therapies should begin in infancy to facilitate the development of motor milestones. Speech therapy is important in monitoring receptive-expressive language skills. In addition, appropriate

therapy is important in monitoring receptive-expressive language skills. In addition, appropriate educational intervention throughout the school years that addresses individual strengths and challenges as well as behavioral issues can be effectively implemented in both inclusion and self-contained classroom settings depending on individual needs.

Long-term follow-up and clinical information on patients older than 40 years are rare in the literature. Marked deterioration of visual function, and even total blindness, can occur over the age of 50 years (Seifert et al. 2006). Kyphoscoliosis can be observed in patients with Cohen syndrome as teenagers or adults, and this tends to be progressive through adult life.

Appropriate management of children with Cohen syndrome requires collaborative efforts from the geneticist, neurologist, endocrinologist, developmental-behavioral pediatrician, nutritionist, psychologist, psychiatrist, educational specialist, and the family. Once the diagnosis of Cohen syndrome is confirmed, it is important for the child to receive multidisciplinary care in addition to routine preventive health care from the primary care physician.

Cohen, Donald J.  Name and Degrees Donald J. Cohen, M.D. (1940–2001).  Major Appointments (Institution, Location, Dates) *   Director, Yale Child Study Center, 1983–2001. *   President, International Association of Child and Adolescent Psychiatry and Allied Professions, 1992–1998.
 Major Honors and Awards *   Doctorate Honoris Causa, Bar-Ilan University, 1997. *   Lifetime Achievement Award, International Meeting for Autism Research, 2001.

Landmark Clinical, Scientific, and Professional Contributions Donald Cohen was the leading American child psychiatrist of his generation and helped advance the neurobiological study of autism, initially through his work in the 1970s and 1980s on serotonin and monoamines in cerebrospinal fluid and later by developing cross-disciplinary research collaborations at the Yale Child Study Center and beyond. Under his directorship, the research program on autism at Yale broke new ground, among other

Under his directorship, the research program on autism at Yale broke new ground, among other areas, in nosology (through the DSM field trials led by Fred Volkmar), phenotypic definition (through Ami Klin’s eye tracking paradigms), and neural substrates (through Robert Schultz’s imaging studies of the fusiform gyrus). In addition, Cohen brought to autism research his background in philosophy and psychoanalysis, as exemplified in his collaborations on theory of mind with Simon Baron-Cohen, and on

as exemplified in his collaborations on theory of mind with Simon Baron-Cohen, and on the contributions of psychoanalysis to social development with Linda Mayes.

Short Biography Born in Chicago in 1940 to a humble family, Donald Cohen attended college at Brandeis University. He studied philosophy at Cambridge before enrolling in medical school at Yale. He trained in pediatrics at Children’s Hospital Boston and in psychiatry at the Massachusetts Mental Health Center. During his time in Boston, he worked with Ogden Lindsay in his operant conditioning laboratory. During the Vietnam War, he worked in Washington, D.C., as special assistant to Edward Zigler,

During the Vietnam War, he worked in Washington, D.C., as special assistant to Edward Zigler, helping him in the development of the Head Start program. Cohen was recruited back to Yale in 1972 by Albert Solnit, whom he succeeded as director of the Yale Child Study Center in 1983. At Yale, Cohen was able to integrate his background in philosophy, psychoanalysis, and neuroscience particularly on two “model” disorders: Tourette’s syndrome and autism. His early studies on monoamine metabolites in

“model” disorders: Tourette’s syndrome and autism. His early studies on monoamine metabolites in serum and CSF were conducted at the Children’s Clinical Research Center (CCRC) at Yale-New Haven Children’s Hospital. Cohen was codirector of the CCRC from the time of his arrival at Yale until his succession by his close collaborator James Leckman in 1983. Cohen’s early studies on monoamine metabolites were followed by his development of a rich multidisciplinary research program for autism at the

were followed by his development of a rich multidisciplinary research program for autism at the Yale Child Study Center. Key collaborators in this program were Fred Volkmar (who eventually would go on to lead it), Ami Klin, Robert Schultz, Rhea Paul, and George Anderson. In addition to a wide portfolio on neurobiological studies of autism, Cohen remained interested and made seminal contributions to theory of mind and the inner life of individuals with autism, as well as to the ethical

to theory of mind and the inner life of individuals with autism, as well as to the ethical imperative to conduct sound research in vulnerable populations, including individuals affected with autism. Much of Cohen’s later career was devoted to establishing international programs in child and adolescent psychiatry, a focus that he developed as president of the International Association of Child and Adolescent Psychiatry and Allied Professions.

Collaborative Program of Excellence in Autism  Major Areas or Mission Statement The mission of the CPEA network was to increase empirical knowledge about autism through the use of (1) multiple levels of interdisciplinary investigation into the genetics, neurobiology, and clinical aspects of autism; (2) rigorous phenotyping of research participants to support network-wide studies of large numbers of participants; and (3) a collaborative process of sharing data, findings, and ideas to move the

of participants; and (3) a collaborative process of sharing data, findings, and ideas to move the science ahead as quickly as possible. The purpose of this network was to gain knowledge that could lead to prevention, treatment, and/or amelioration of the disabling effects of autism on people with autism and their families.

Landmark Contributions The CPEA network was created as result of a congressionally mandated conference on the State of the Science in Autism, which took place in April 1995, to identify gaps in the knowledge of autism and directions for future research. The NICHD and the NIDCD joined together in 1997 to fund a 5-year project that consisted of nine clinical centers that each had a unique focus of autism research. The CPEA network was funded through an NIH Cooperative Agreement mechanism.

of autism research. The CPEA network was funded through an NIH Cooperative Agreement mechanism. Funding was secured in 2002 for a second 5-year cycle. The primary goal of this program was to bring together expertise, infrastructure, and resources focused on major questions about autism. The research issues addressed include advanced techniques of diagnosis and assessment, population genetics and molecular biology, structural and functional brain imaging, animal models, behavioral and cognitive

molecular biology, structural and functional brain imaging, animal models, behavioral and cognitive neuroscience, and focused interventions, to elucidate the neurobiology of autism, with the long-term goal of effective diagnosis, treatment, and prevention. The CPEAs have linked scientists from the United States, Canada, Britain, and five other countries in the study of more than 2,200 families over 10 years. As a result, the CPEAs have data on the genetic and phenotypic characteristics of the

10 years. As a result, the CPEAs have data on the genetic and phenotypic characteristics of the world’s largest group of well-diagnosed persons with autism. The funding of the network ended in 2007 when the NIH consolidated its funding for autism research into other programs.

Major Activities The CPEA network conducted basic and clinical research on the possible genetic, immunological, neurobiological, and environmental causes of autism. The network also investigated the developmental course of autism and how specific brain structures were related to autism. These undertakings required that each CPEA implement a cohesive, site-specific, multidisciplinary research program on the causes, brain substrates, functional characteristics, and clinical development of autism.

on the causes, brain substrates, functional characteristics, and clinical development of autism. In addition, each site participated in a trans-network collaborative study for which no single site had sufficient expertise and/or participant sample size. Network projects evaluated the effectiveness of the hormone, secretin, in the treatment of autism (Owley et al. 2001; Unis et al. 2002); the candidate autism genes, HOXA and Reelin (Devlin et al. 2002, 2004); the onset of regression and

the candidate autism genes, HOXA and Reelin (Devlin et al. 2002, 2004); the onset of regression and measles-mumps-rubella vaccination (Richler et al. 2006); early regression in social communication in autism (Richler et al. 2006); the heterogeneous association between Engrailed-2 and autism (Brune et al. 2008); familial autoimmune thyroid disease and regression in autism (Molloy et al. 2006); frontal lobe function in people with autism (Ozonoff et al. 2004); the relationship between head

frontal lobe function in people with autism (Ozonoff et al. 2004); the relationship between head circumference and autism (Lainhart et al. 2006); and IQ-based subtypes of autism (Munson et al. 2008).

Collateral Effects of Youth Disruptive Behavior Disorders on Mothers’ Psychological Distress: Intellectual Disability, or Typical Development
 Definition Our focus herein is on how disruptive behavior disorders in youth with intellectual disability and/or autism spectrum disorder impact their families. We further examine the mitigating effects of positive beliefs and dispositional optimism on parents’ distress.

Historical Background Impact of Child Developmental Disability on the Family It has long been recognized that raising a child with a developmental disability, such as autism, impacts families. These impacts are usually framed as parenting challenges, though more recent researchers have noted positive impacts as well. While some disabilities are apparent at birth (e.g., Down syndrome), others become apparent as the child develops (e.g., mild delays, autism). Thus, four facets of developmental

apparent as the child develops (e.g., mild delays, autism). Thus, four facets of developmental risk and families become obvious: The first is that the impact on families relates to the nature of the child’s disorder. The second is that this impact is also related in some ways to the family’s strengths and resources. The third is the extent of effective support services that are available to the family. A fourth, which we focus on in this article, is when the developmental disability is

to the family. A fourth, which we focus on in this article, is when the developmental disability is compounded by behavior problems and/or mental disorders, which are more likely in children and youth with developmental disabilities. Relatedly, these disorders themselves, especially when compounded by concomitant psychological problems, have collateral effects on parents.

The literature reviewed here speaks to youth with autism spectrum disorder as well as to those with intellectual disabilities, together considered developmental disorders. To a more limited extent, it speaks to impacts on fathers as well as mothers. This section briefly reviews the impacts on families of the child’s disability itself, within a historical perspective. The next section addresses in more detail the collateral effects on families when the developmental delay is comorbid with

in more detail the collateral effects on families when the developmental delay is comorbid with behavior problems and/or mental disorders. The final section provides examples of protective factors for parent and family adjustment, with an illustrative focus on dispositional optimism.

Looking back: Historically, developmental disorders were not only viewed as tragedy, but also with a sense of hopelessness. Some writers spoke to devastating effects, as does the classic paper by Simon Olshansky (1962) who wrote of “chronic sorrow.” He proposed that the adjustment to a retarded child (the terminology of the era) is not time-bound, but that over time repeated sadness, and even intense grieving, is periodically experienced. Indeed, the common advice of the times was to

even intense grieving, is periodically experienced. Indeed, the common advice of the times was to institutionalize the child, and state-run “training schools” across the USA had become lifelong residences for many.

Now almost six decades later: A number of developments have tempered the negative aspects of raising a child with a disability, in the views of professionals and the lived experience of parents. These changes in the USA, still progressing, have included (a) a marked decline in out-of-home care; (b) legislation mandating free and appropriate education for all handicapped children, codified in the 1975 Public Law 94–142 and more recently in 2004 as IDEA; (c) expanded early childhood programs; (d)

Public Law 94–142 and more recently in 2004 as IDEA; (c) expanded early childhood programs; (d) considerably increased funding for related research and services; (e) innovations in evaluations and educational curricula; (f) more visibility of children and adults with disabilities in society; and (g) recent media attention to the marked increase in autism spectrum disorder (ASD). These, and other developments, along with more positive family perspectives, are accompanied by increasingly

other developments, along with more positive family perspectives, are accompanied by increasingly accepting societal views of persons with developmental disabilities.

While parents today certainly still experience the complex of emotions associated with raising a child with a developmental disability – and in many cases experience these sooner with earlier diagnoses – they also find wider community awareness and acceptance and earlier access to services.

Developmental disorders and effects on families: Over the past two decades, studies of families raising a child with a developmental disability have focused mainly on parenting stress and factors that reduce it. Patton et al. (2018), for example, studied carers for adolescents with ID vs. those with typical cognitive development (TD), finding that parents of youth with ID experienced significantly higher levels of stress. Similarly, a meta-analysis analyzed parent-reported stress in families of

higher levels of stress. Similarly, a meta-analysis analyzed parent-reported stress in families of children with autism spectrum disorder (ASD) vs. families with typically developing children (TD) (Hayes and Watson 2013). The authors found a large effect size indicating greater stress with ASD. While emphases, understandably, have been on negative impacts of child disability on the family, and while perceived positive impacts do not negate these, it is important to report that many parents can

perceived positive impacts do not negate these, it is important to report that many parents can readily find the “sunny side of the street” (Blacher et al. 2013a). Studies have examined positive impacts on the family of having a child with a disability and variables associated with positivity (e.g., Bayat 2007; Blacher and Baker 2007).

One found that family resources, including higher income, time for interaction with the child, and social support, predicted lower parenting stress better than did aspects of the child’s functioning (Smith et al. 2001). Parents’ social support was also found to be a buffer, as carers with higher social support were no more stressed than carers for typically developing children.

Parents’ well-being and positive relationships are also protective factors. Gerstein et al. (2009) examined parents’ resilience and the course of daily parenting stress across the preschool years for their child with intellectual disability (ID). Overall mothers’ daily parenting stress did increase some over time, while fathers’ stress remained more constant. For mothers with decreased stress, this was associated with both mother’s and father’s well-being and their perceived good marital

this was associated with both mother’s and father’s well-being and their perceived good marital adjustment, as well as a positive father-child relationship. Father’s stress trajectory was affected only by mothers’ well-being and both parents’ marital adjustment.

A study of perceptions of positive impact examined 219 families annually from child ages 3 through 9, examining two predictors: child disability status (ID or TD) and family culture (Anglo, Latino) (Blacher et al. 2013b). Anglo mothers initially reported significantly lower positive impact when their child had an ID, but Latino mothers did not. Across all time points, Latino mothers reported higher positive impact than Anglo mothers, regardless of whether they had a child with ID or TD.

While parents today certainly still experience the complex of emotions associated with raising a child with a developmental disability — and in many cases experience these sooner with earlier diagnoses — they also find wider community awareness and acceptance and earlier access to services. The developmental disability literature in the past two decades, while acknowledging the panoply of emotions and challenges that parents still experience, is increasingly focused on gaining a better

emotions and challenges that parents still experience, is increasingly focused on gaining a better understanding of family needs and strengths. Studies are going beyond descriptions of family impacts, to examine child, parent, and family characteristics that promote acceptance and support.

Current Knowledge Child Developmental Disability and Collateral Behavior Problems and/or Mental Disorder

Beyond the impact that children with disabilities have on their parents and families are two related observations: First, youth with developmental disorders are significantly more likely than typically developing youth to have collateral behavior problems and/or diagnostically classified psychiatric disorders. Second, the combination of youth disabilities and diagnoses will have a heightened impact on their parents and family. We will first examine the increased prevalence of behavior/mental

on their parents and family. We will first examine the increased prevalence of behavior/mental disorders in youth with ID and ASD and then consider how children with both a developmental disability and also collateral behavior problems/mental disorder impact their families.

Heightened behavior/mental health disorders. Many studies, especially in the last two decades, have addressed comorbid behavioral and mental disorders. We will first focus on ASD. One study conducted a semi-structured interview with parents of school-aged children with ASD or control youth. There were significantly higher rates of ADHD, but also of anxiety disorder, in the youth with ASD (Rosa et al. 2016). This finding is consistent with many other studies (e.g., Leitner 2014; Simonoff et al.

al. 2016). This finding is consistent with many other studies (e.g., Leitner 2014; Simonoff et al. 2008). The true incidence may be even higher, as Leitner and colleagues (2014) pointed out that the widely used Diagnostic and Statistical Manual (DSM-IV) had ASD diagnosis as an exclusion criterion for ADHD, thus limiting research on their common co-occurrence. This exclusion was eliminated in 2013, with the publication of DSM-V, so we might expect even greater comorbidity reported since then.

Focus on Autism: One frequent comorbidity is autism spectrum disorder (ASD) and the mental health diagnosis of attention deficit hyperactivity disorder (ADHD). This paired comorbidity has both high incidence and considerable impact on families. ADHD is defined by impaired functioning in the areas of attention, hyperactivity, and impulsivity, whereas ASD is characterized by core social communication deficits and restrictive-repetitive behaviors. Studies have shown that between 30 and 50% of

deficits and restrictive-repetitive behaviors. Studies have shown that between 30 and 50% of children with ASD manifest ADHD symptoms (particularly at preschool age), and, similarly, estimates suggest two-thirds of individuals with ADHD show features of ASD (Davis and Kollins 2012).

Other studies of comorbid disorders in young children with ASD have found high rates of language problems, intellectual disability, below average motor function, and severe hyperactivity, ranging from 33% to 78% of this child group (Carlsson et al. 2013). In a major study from 14 sites in the USA and in Canada, Sikora et al. (2012) found that of 1737 young children diagnosed with ASD, 40% reached clinical levels on measures of ADHD.

While the link between ASD and ADHD has received the most research attention, we note that many other problems arise in children and youth with developmental disabilities, either comorbid with ADHD or separately, including anxiety, depression, behavior problems, fewer adaptive skills, and overall poorer quality of life. When a child with ID or ASD manifests any of these comorbid behavior and/or mental disorders, the impact on parents and families becomes more severe. One clear indication is

mental disorders, the impact on parents and families becomes more severe. One clear indication is that primary care providers for children with developmental disorders should screen for symptoms of ADHD, other psychiatric disorders, behavior problems, and adaptive skill deficits in these children and consider these broader co-occurring problems when developing a care plan.

Increased impact on families. It is, then, common that when a child has a developmental disorder, many – indeed most – families will encounter additional child-rearing challenges beyond those in the core definitions of intellectual disability and/or autism spectrum disorder. These “collateral effects” from behavior disorder/mental health challenges have negative impacts on the child and also on the family, beyond – and even greater than – the impact of the disability itself. Indeed, evidence

the family, beyond – and even greater than – the impact of the disability itself. Indeed, evidence supports the conclusion that the behavior disorder/mental health problems greatly overshadow the disability in the challenge facing families. This section, then, considers studies by researchers who examined youth with a type of dual diagnosis serious enough to put limits on the youth’s opportunities. Our key focus is on the extent to which parenting stress, parent psychological adjustment, and

Our key focus is on the extent to which parenting stress, parent psychological adjustment, and family functioning are impacted by rearing a child with a comorbid developmental disability and behavior/mental disorder.

Looking back: McIntyre et al. (2002) assessed collateral impacts on the family by looking back. They conducted lengthy interviews with the mothers of 103 young adults with severe ID. They assessed not only the young adult’s adaptive functioning, maladaptive behavior, and mental health problems but also the extent to which these had in the past and presently have negative impacts on the family. Behavior and/or mental health problems significantly increased mothers’ perceived negative impact of

Behavior and/or mental health problems significantly increased mothers’ perceived negative impact of the YA on the family and predicted the family’s steps toward seeking out-of-home placement.

At the same time (2002) Baker et al., at three universities, examined 225 3-year-old children with developmental delays or typical cognitive development. Parents completed the Child Behavior Checklist (CBCL: Achenbach and Edelbrock 2002), a measure of child behavior problems that yields diagnostic categories. They also completed a self-report measure of parenting stress called the Family Impact Questionnaire (Donenberg and Baker 1993). Total behavior problems scores within the designated

Questionnaire (Donenberg and Baker 1993). Total behavior problems scores within the designated clinical range were three (mothers’ scores) to four (fathers’ scores) times as likely for children with developmental delays. Collateral effects of disability and behavior disorders were already evident at this young age, as parenting stress scores were significantly higher in families of the children with both developmental delays and clinical level behavior problems. Regression analyses revealed that

both developmental delays and clinical level behavior problems. Regression analyses revealed that the extent of child behavior problems was a much stronger contributor to parenting stress than was the child’s cognitive delay, a surprising finding that now has been replicated in many other studies (e.g., McStay et al. 2013).

Other investigators have underscored, and expanded upon, the adverse effects on parents and families from the frequent collateral effects of a child’s developmental disability and accompanying internalizing (e.g., anxiety) or externalizing (e.g., attention or conduct problems) disorders. To cite a few: Yorke et al. (2018) disaggregated child externalizing and internalizing problems and showed that parents’ mental health problems and parenting stress were not solely driven by either, but,

that parents’ mental health problems and parenting stress were not solely driven by either, but, rather, that both are causal factors. Carlsson et al. (2013) expanded the scope of outcome from behavior/mental health disorders in young children with ASD, reporting heightened parenting stress from other domains, including comorbid language problems, below average motor function, and severe hyperactivity. Other researchers have found decreased physical health in mothers parenting a child with

Other researchers have found decreased physical health in mothers parenting a child with comorbid disorders (Benson 2017).

In sum, parents and families raising a child with a developmental disorder often face the dual challenge of also coping with comorbid behavior problems/mental health disorder and related effects. As we have noted, the comorbid behavior/mental health conditions often present more difficulties for the child and the family than the developmental disorder. We have spoken mainly of parenting stress, but there are also wide-ranging daily challenges that limit social, educational, employment, and

but there are also wide-ranging daily challenges that limit social, educational, employment, and other opportunities for the child, siblings, and parents. Fortunately, there are today many available services that provide support, respite, guidance, and more. What is most encouraging is that so many families have found ways to accept the child’s disabilities and integrate him or her into family life. Our next section will look at positive parent and family characteristics that normalize and

life. Our next section will look at positive parent and family characteristics that normalize and embrace disability.

Dispositional Optimism and Positive Beliefs: Buffering the Impact of Child Developmental Disability and Comorbid Behavior/Mental Health Challenges on Parents and Family Well-Being

Optimists have a favorable outlook on life: they believe that good rather than bad things will happen to them (Olason and Roger 2001). Over 35 years ago, Crnic et al. (1983) proposed a model for the study of families that presented a more positive view of family outcome, to balance the more negative perspectives so predominant in the literature at that time. Parents have within themselves many ways of coping with child-rearing challenges. We will focus here on parent cognitions, especially

ways of coping with child-rearing challenges. We will focus here on parent cognitions, especially dispositional optimism and positive beliefs, as they moderate the collateral effects of child developmental disorder when combined with behavioral/mental health challenges. We consider here beliefs that will ease child-rearing challenges, drawing primarily on studies of children with dual diagnoses of developmental disability and behavior/mental health disorders (Blacher et al. 2013a). One

of developmental disability and behavior/mental health disorders (Blacher et al. 2013a). One important finding to remember has been that when causes of increased parenting stress have been parsed into (a) the child’s developmental disability itself or (b) the comorbid child behavior problems/mental disorders, the latter accounted for most of the variance (Baker et al. 2002).

Dispositional optimism. Scheier and Carver (1985) proposed dispositional optimism as a relatively stable personality trait that leads to more positive coping with adversity or a “general positive expectation regarding future events regardless of one’s control over the outcome” (Scheier et al. 1994). Optimists have a favorable outlook on life: they believe that good rather than bad things will happen to them. Our use of “optimistic” in what follows is referring to dispositional optimism. To

happen to them. Our use of “optimistic” in what follows is referring to dispositional optimism. To maintain such positive beliefs, optimists rely on positive evaluation of the social context and its ability to provide necessary support. Dispositional optimism leads parents to have an attentional bias toward their children’s positive behaviors (Segerstrom 2001).

While dispositional optimism is a general positive expectation about future events, self-mastery is the belief in one’s control over specific events. Paczkowski and Baker (2008) examined the role of self-mastery and then examined self-mastery and dispositional optimism together (“positive beliefs”). One’s perception of control over life events and one’s optimism about the future may be accurate reflections of the true degree of control one has or of the actual likelihood of future positive

reflections of the true degree of control one has or of the actual likelihood of future positive events. However, many people display unrealistic beliefs about the degree to which they control events in their environments. Regardless, optimism, no matter how unwarranted the positive outlook is, will lead to better coping with child challenges.

Measuring dispositional optimism. The widely used research measure of optimism is the self-report Life Orientation Test -Revised (LOT-R), a 6-item self-report scale with four additional filler items (Scheier et al. 1994). Sample items are “In uncertain times, I usually expect the best” and “If something can go wrong for me, it will” (reverse coded). Respondents indicate the extent of agreement on a 5-point Likert scale from 0 (Definitely disagree) to 4 (Definitely agree). The LOT-R has high

on a 5-point Likert scale from 0 (Definitely disagree) to 4 (Definitely agree). The LOT-R has high internal reliability. In one study, parent optimism scores at child ages 3, 6, and 9 years were quite stable across these assessments. In that study, mean optimism scores for parents of children with ID or TD did not differ significantly (Blacher et al. 2013b).

Dispositional optimism further explored. This personality trait of optimism, which is present early in life, is associated with more problem-focused coping, such as seeking social support, actively solving problems, and maintaining a positive outlook on life. The relationship between dispositional optimism and more positive outcomes has been supported by considerable research. In one study higher optimism related to increased positive affect, greater life satisfaction, and psychological

higher optimism related to increased positive affect, greater life satisfaction, and psychological well-being (Ekas et al. 2010). In another, optimistic parents of children with a developmental disorder were more likely to engage in problem-solving and seeking social support (Khan and Alam 2016). In other studies, more optimistic parents were effectively modulating their anger and patience, managing their children more appropriately, and developing more effective coping strategies (Koenig et

their children more appropriately, and developing more effective coping strategies (Koenig et al. 2010). In short, dispositional optimism and positive beliefs are protective factors for mothers’ and fathers’ parenting and well-being.

Dispositional optimism, then, moderates the effect of child challenges on parents’ psychological distress. As child challenges increase, optimism has a progressively greater benefit. Many studies have found higher dispositional optimism to be related to increased positive and decreased negative parenting. One found that inner-city mothers with higher optimism had more positive parenting (Jones et al. 2002). Ellingsen et al. (2013, 2014) examined parent variables that predicted changes in

et al. 2002). Ellingsen et al. (2013, 2014) examined parent variables that predicted changes in resilient parenting from ages 3 to 5 and 5 to 8 years. Mothers’ education and optimism were protective factors for positive parenting from child ages 3 to 5 and for resilient parenting from child age 5 to 8. Taylor (2010) more generally showed that optimism helps parents maintain positive parenting during adverse times.

Positive beliefs. Related to optimism are parents’ positive beliefs about the child and child-rearing. Hastings and Taunt (2002) found that parents spoke to benefits they derived from raising a child with ID or ASD; these included having increased sensitivity and tolerance, a changed perspective on life, improved family dynamics, and opportunities to learn new information. Beighton and Wills (2019) reviewed 22 studies across many countries, reporting how parents described the positive aspects

reviewed 22 studies across many countries, reporting how parents described the positive aspects of parenting their child with ID. They concluded that caregivers reporting positive aspects had better self-reported health, fewer depressive symptoms, higher caregiving competence, and greater family adjustment. Fully 75% of mothers and 67% of fathers reported experiencing personal/emotional growth and increased benefit finding. Greater social support led to more positive parent perceptions.

Research published over the past two decades has underscored the power of positivity, whether in the form of positive perceptions, positive coping, or optimism. To maintain such positive beliefs, optimists rely on a sense of positive evaluation of the social context and its ability to provide necessary support. Optimists are more likely to engage in problem-solving and seeking social support. They effectively modulate their anger and impatience, as well as manage their children more

They effectively modulate their anger and impatience, as well as manage their children more appropriately. Problem-focused coping which emphasizes efforts to seek social support, actively solve the problem, and maintain a positive outlook on life is most adaptive.

Positive impact/positive perceptions. Positive impact can be assessed by a subscale of the Family Impact Questionnaire (FIQ; Donenberg and Baker 1993). This 7-item scale is introduced by “We would like to know what impact your child has had on your family compared to the impact other children his/her age have on their families.” Sample items are: I enjoy the time I spend with my child more, and My child makes me feel more energetic. Perceived positive impact was assessed with parents of 92

My child makes me feel more energetic. Perceived positive impact was assessed with parents of 92 children with developmental delay (DD) and 122 TD children at ages 3, 4, and 5 years (Blacher and Baker 2007). Even with this large sample, there were no significant differences between mothers or fathers of DD and TD children. However positive perceptions did significantly lessen the relationship between child behavior problems and parenting stress.

We close with an illustration of how mothers’ psychological symptoms (e.g., stress, depression) are increased with increasing child risk, but moderated by mothers’ optimism (Blacher and Baker 2017). Families were assigned to one of three child categories of increasing risk to parent well-being: The child had neither disability nor disorder (Risk 0); had disability or disorder (Risk 1); or disability and disorder (Risk 2). Mothers’ optimism scores were divided into thirds (high, medium, low

and disorder (Risk 2). Mothers’ optimism scores were divided into thirds (high, medium, low optimism). Mother’s self-reported psychological symptoms were derived from the Symptom Checklist (Derogatis and Savitz 2000). When child risk was low (0), mother’s psychological symptoms were also low, and optimism did not matter. As child risk increased, mothers’ psychological symptoms also increased. This was most dramatic for mothers with low optimism; mothers with high optimism demonstrated very few

was most dramatic for mothers with low optimism; mothers with high optimism demonstrated very few psychological symptoms. Statistically, main effects of risk and optimism were highly significant, and the risk x optimism interaction was also significant. Risk F = 12.99, p < 0.001 Optimism F = 10.74, p < 0.001; Risk X Optimism F = 2.63, p < 0.05.

Future Directions  To date, the dominant theme in the literature on family impact of ASD, with or without comorbid ID, has been stress and overall negative effects. Clearly, children with ASD are at great risk of concomitant psychological disorders. Indeed, it is rare to find autism in the absence of other comorbidities (Gillberg and Fernell 2014). Happily, though, there is a trend of work focusing on more positive aspects of rearing a child with behavioral challenges, and these findings pertain

on more positive aspects of rearing a child with behavioral challenges, and these findings pertain to parents of children, youth, and young adults with ASD and comorbid disorders. We are hopeful that the empirical findings reported here will be translated into interventions for parents, in order to foster more adaptive outcomes.

College Transitional Programs  Definition  College Transition Programs are specialized programs dedicated to helping young adults with ASD to have successful college experiences. The number of these programs has dramatically increased over recent years, and there are programs located across the United States.

Historical Background  The population of individuals with ASD has risen dramatically in the past three decades, from one in 10,000 individuals in the 1980s (Autism Science Foundation 2012) to 1 in 68 children in 2016, according to estimates from the CDC (2016). There has also been a shift in the characteristics of this population. In the years between 1966 and 1998, only about 20% of individuals with an autism diagnosis were found to have IQs in the average range (Fombonne 1999). As of 2010,

with an autism diagnosis were found to have IQs in the average range (Fombonne 1999). As of 2010, nearly half of individuals with autism had IQs in the average range (CDC 2014). In addition to this shift in cognitive ability of those with ASD diagnoses, more effective and widely available early intervention programs have emerged, leading to better outcomes among this group.

The increase in overall numbers of individuals diagnosed with ASD, coupled with this shift in IQ, has vastly increased the number of individuals on the autism spectrum who have the cognitive capacity for college-level academics. As identification of ASD among individuals with no intellectual disability has improved, it is likely that the numbers of college students with ASD will continue to rise (Barnhill 2014). These factors have all impacted the trajectory of the lives of individuals with

(Barnhill 2014). These factors have all impacted the trajectory of the lives of individuals with ASD, leading to a higher level of participation in college environments.

A longitudinal study completed in 2007 revealed that individuals who were diagnosed with an autism spectrum disorder in childhood generally retained this diagnosis into adulthood (Cederlund et al. 2008). Adult outcomes for individuals with ASD have historically been troublesome. Of those individuals with an ASD diagnosis and cognitive abilities in the average range, only 27% achieved what would be described as a “good outcome” in adulthood (Cederlund et al. 2008). Due to the extremely small

be described as a “good outcome” in adulthood (Cederlund et al. 2008). Due to the extremely small numbers of individuals with ASD who attended colleges and universities in the twentieth century, little to no historical data about college success exists.

Students with ASD who attended college in previous decades were generally supported through the department/personnel who supported students with any disability, and at many colleges and universities, this remains the case. Legislation such as the Americans with Disabilities Act (ADA 1990) and Section 504 of the Rehabilitation Act of 1973 mandated equal access for individuals with disabilities, as well as provision of certain accommodations. Passage of these laws resulted in an increase in the

well as provision of certain accommodations. Passage of these laws resulted in an increase in the ability of individuals with a range of disabilities to access higher education. However, as the number of students with ASD who were both interested in and capable of completing a college education rose, programs emerged with their needs in mind. The first university-based program was the college program for students with Asperger syndrome at Marshall University in Huntington, West Virginia. This

for students with Asperger syndrome at Marshall University in Huntington, West Virginia. This program, founded in 2002, was initially developed by the West Virginia Autism Training Center located at Marshall to meet the needs of a single student (Ellison, M., personal communication, 1/11/2017). Due to a high level of demand, it rapidly expanded and remains a pioneering program in the field today.

Current Knowledge  Approximately 50,000 individuals with autism turn 18 each year (Roux et al. 2013), and that number continues to rise. Engagement in productive activities after high school remains a challenge for individuals with ASD. A study conducted in 2012 by Shattuck et al. revealed that 34.7% of individuals with ASD had attended college within 6 years after high school. More than 50% of the young adults with ASD had no participation whatsoever in employment or post-secondary education

the young adults with ASD had no participation whatsoever in employment or post-secondary education within the first 2 years after high school. College success for students with ASD has remained a challenge. Even among those students who participate in higher education, high levels of academic achievement and meeting graduation requirements has often been elusive. At the conclusion of Shattuck et als’study (2012), less than 20% of students who went directly from high school to a 4-year college

als’study (2012), less than 20% of students who went directly from high school to a 4-year college had graduated or were on track to graduate.

At the time of this publication, there were at least 31 college transition programs for individuals with ASD known to be in existence in the United States (Barnhill 2016), with that number increasing each year. There are a range of types of programs and supports that are offered. There are some programs that provide individuals with ASD an opportunity to participate in program offerings based on a college campus, outside of the standard coursework that the college offers. Other programs

on a college campus, outside of the standard coursework that the college offers. Other programs provide supports to individuals as they participate in the standard coursework. Of these programs offering support to take credit-bearing coursework, there are some, such as the program at Marshall, that are operated by the hosting university or a related entity. Other programs, such as Chapel Haven in New Haven, CT, and Tucson, AZ, are operated by nonprofit agencies and have supports available at

in New Haven, CT, and Tucson, AZ, are operated by nonprofit agencies and have supports available at multiple colleges and universities. And still others are for-profit corporations offering services at various locations around the United States.

There are varying levels of supports offered at these various programs as well. Some programs offer supports which focus predominantly on academic success, others also include a focus on peer relationships and social skill development, and a few provide a broad range of supports including academic, social, daily living skills, and career development. Most of these programs have oversight provided by a professional experienced in working with students with ASD. Many also have a range of

provided by a professional experienced in working with students with ASD. Many also have a range of professional staff, while others utilize graduate students from the university, or undergraduate students, often in peer mentor roles.

College transition programs often provide tutoring, organizational support, and/or support accessing on-campus academic resources to help students with ASD succeed in their classes. Some programs also offer supports such as social skills instruction, counseling, or behavioral consultation. Many offer assistance accessing activities with peers, including clubs, sports activities, and residential life activities. A few of the most comprehensive programs also offer supports within the

life activities. A few of the most comprehensive programs also offer supports within the individual’s residential environment, whether that be in a college residence hall or elsewhere.

A recent study identified 31 institutions of higher education that provided support services for individuals with ASD beyond those typically offered by college or university disability offices (Barnhill 2016). Of 30 institutions that shared information about their practices for this study, the vast majority provided academic accommodations (e.g., extended time, tutoring, notetakers, etc.) as well as an assigned advisor. More than two thirds of these programs also provided peer mentoring and

as an assigned advisor. More than two thirds of these programs also provided peer mentoring and accommodations in the areas of life skills and social skills. The provision of support services was more variable. Approximately 50% provided social skills groups and 43% provided individual therapy, while just 17% used a group therapy model and only 13% utilized non-therapeutic groups (Barnhill 2016).

Specifically tailored interventions can allow students with ASD to succeed in the college environment. It is imperative that students and families explore all available options in order to assess the “goodness of fit” of postsecondary programs (VanBergeijk et al. 2008). Finding a program that offers the necessary supports for an individual and also provides access to a college or university that meets the individual’s academic needs can be daunting. Families and individuals with ASD may begin

meets the individual’s academic needs can be daunting. Families and individuals with ASD may begin the process of searching for the right program significantly in advance of the individual reaching college age. The assistance of educational consultants and other professionals is sometimes sought. The West Virginia Autism Training Center offers a document entitled “Benchmarks of Effective Supports for College Students with Autism Spectrum Disorders” on their website. This document assists

for College Students with Autism Spectrum Disorders” on their website. This document assists students and families in evaluating college transition programs supports as related to the needs of an individual student (Ellison et al. 2012).

Students participating in structured college transition programs have access to substantially more supports than individuals attending college without the assistance of such a program. Even with these supports in place, many individuals on the autism spectrum continue to face some challenges in the postsecondary environment. Challenges faced by college students with ASD include managing new situations and unexpected changes, social relationships, problems with information processing, and time

and unexpected changes, social relationships, problems with information processing, and time management (Van Hees et al. 2015). They juggle challenges in both college life and basic independent living skills.

An additional consideration when students are exploring college transition programs is cost. A small number of programs are able to provide services at no additional cost to students, outside of college tuition, but the vast majority of support programs for students with ASD require additional tuition and/or fees, which can be significant and pose a barrier for many students and families. These fees may be as low as a few hundred dollars per semester, or up to tens of thousands of dollars per

fees may be as low as a few hundred dollars per semester, or up to tens of thousands of dollars per semester, depending upon the types of supports offered.

The existence of college transition programs offer a path to postsecondary success that many students with ASD may not have otherwise. Selecting the right program, with an appropriate array of supports for an individual student can be life-changing. Anecdotal information and observations suggest that these programs lead to higher levels of college success for individuals with ASD, but thus far, there has been virtually no research done to investigate the success of these programs or of the

there has been virtually no research done to investigate the success of these programs or of the specific components within these programs. Some programs, including Chapel Haven, have embarked on a path to collect data in order to empirically demonstrate outcomes of their transition programming.

Future Directions  As the rising numbers of individuals with ASD complete high school and begin to enter post-secondary educational institutions, the supports available to them will need to continue to expand to meet this increased need. There will likely be a broadening of supports to meet the unique needs of this population. In a recent survey, individuals with ASD identified that programs facilitating their success should have a personalized approach, a safe/transparent environment, academic

their success should have a personalized approach, a safe/transparent environment, academic accommodations, adequate psychosocial support, leisure activities, and a sufficient amount of rest. They also identified that coaching in education, student life, and daily living should be integral to their supports (Van Hees et al. 2015).

A large majority (79%) of individuals with autism spectrum disorders meet the criteria for a psychiatric disorder at some point in their adult life. These symptoms are most prevalent during the young adult years (Lever and Geurts 2016). These challenges need to be addressed simultaneously to academic and independent living challenges so that the individual may be successful in the college environment. It will be important for college transition programs in the future to continue to provide

It will be important for college transition programs in the future to continue to provide and/or expand access to these supports to facilitate student success. We have little detailed empirical data about psychiatric challenges among this population however, so there is a need to continue to investigate to learn more about these challenges can be addressed (Howlin 2014; van Schalkwyk et al. 2016).

There is a dire need for more data and research regarding the types of supports that lead to success in the transition to college for individuals with ASD. As the need for supports have become apparent, many programs have emerged, but information on their effectiveness is scarce. Due to the lack of data on adult interventions in general, most of these programs have needed to rely on information about best practices for children in the development of their programs. Although there is often

about best practices for children in the development of their programs. Although there is often anecdotal information about what is and is not working for individual participants, there is a dearth of information regarding best practices in transition programming for college students with ASD. In a 2014 systematic review, Gelbar, Smith, and Reichow identified 20 articles, describing a total of 69 college students with ASD, only two of which were empirical studies (Gelbar et al. 2014).

It would be beneficial for the funding sources for college transition programs to be further explored and expanded, in order to allow a greater number of individuals to access these services. There is a significant disparity in college participation for young adults with ASD based upon family income. In a recent study, of those whose parents fell into the lowest identified income bracket, only 19% attended college, while 60% of those with parents in the highest income bracket attended college

attended college, while 60% of those with parents in the highest income bracket attended college (Shattuck et al. 2012). Although this disparity certainly exists among young adults without ASD as well, the added expense of transition programming and supports creates an additional barrier for prospective college students from lower-income households.

Finally, as the effects of autism are not mitigated by college graduation, there is a need to explore ongoing adult services and successful transition to these services for many individuals who have participated in college transition programs. A large number of individuals, even those who have successfully completed college, will continue to require supports with various aspects of adult life, from independent living to developing social networks to employment and career support.

Colossal Commissure ▶Corpus Callosum  Combat Disorder ▶Posttraumatic Stress Disorder  Combat Fatigue ▶Posttraumatic Stress Disorder  Combat Neurosis ▶Posttraumatic Stress Disorder  Comic Strip Conversations  Definition  Comic strip conversations are a social narrative that depicts or enhances a conversation or social situation between two individuals by specifying the underlying thought processes and/or communicative exchanges using line drawings incorporating thought bubbles, speaker bubbles,

and/or communicative exchanges using line drawings incorporating thought bubbles, speaker bubbles, and other symbols. “Comic strip conversations systematically identify what people say and do, and emphasize what people may be thinking” (p. 1, Gray 1994).

Historical Background  Comic strip conversations were first described by Carol Gray in 1994 (Gray 1994) and are closely related to Gray’s Social Stories. Since then, little research has evaluated the efficacy of the intervention, and little development beyond what was initially described by Gray has occurred.

Rationale or Underlying Theory  A comic strip conversation is a type of social narrative. Other types of social narratives include Social Stories, cartooning, and Power Cards (Wragge 2011). A social narrative is a written description of various social situations that might be problematic for an individual with an ASD. The narrative helps explain what typically occurs in a given social situation, thoughts other individuals might have, and how one is expected to act in a given situation. Comic

thoughts other individuals might have, and how one is expected to act in a given situation. Comic strip conversations enhance a conversation between two individuals by specifying the underlying thought processes and/or communicative exchanges using line drawings incorporating thought bubbles, speaker bubbles, and other symbols. Through the incorporation of these items into a conversation, an individual with an ASD is provided a visual and concrete depiction of the conversation and/or social

with an ASD is provided a visual and concrete depiction of the conversation and/or social situation. Providing this pictorial depiction (representation) of an abstract social situation is thought to capitalize on the improved processing of visual information that many individuals with ASDs have. The exact mechanisms by which comic strip conversations and other social narratives are effective remain unknown.

Goals and Objectives  Comic strip conversations aim to help an individual with an ASD understand the underlying thought processes and/or communicative exchanges that occur during conversations and other social situations. Comic strip stories help provide a concrete depiction of the expectations of individuals in specific social situations and the impact that their actions can have on the thoughts of others in that situation, thereby providing the individual with ASD a scheme for improving their

of others in that situation, thereby providing the individual with ASD a scheme for improving their behavior in a social situation. Through the use of thought bubbles (described later), one is able to explicitly show a person’s thoughts, thus providing insight into their theory of mind, which is often a difficult area for individuals with ASD. Because comic strip conversations can provide this visual representation of theory of mind, this is also often a target of intervention.

Treatment Participants  Since there has been little empirical study of comic strip conversations, the following parameters are based on recommendations based on the intervention’s components and techniques. Comic strip conversations are likely to be most beneficial to individuals who have higher cognitive functioning skills across all ASD diagnoses. Although young children (e.g., children younger than 5 years) might benefit from comic strip conversations, the heavy emphasis on language and

than 5 years) might benefit from comic strip conversations, the heavy emphasis on language and higher-order social thinking makes school-age children, adolescents, and adults to be the ages of individuals who are likely to receive the most benefit.

Treatment Procedures  Comic strip conversations are typically completed in a one-to-one child to therapist (teacher, parent, etc.) ratio. The intervention begins with the adult engaging in small talk to strengthen rapport. The child or therapist then begins the conversation by drawing a social scene involving multiple people. Multiple boxes (or pages) can be used if the scene involves multiple steps or situations. Speaker bubbles can be used to indicate what people are saying in the scene, and

or situations. Speaker bubbles can be used to indicate what people are saying in the scene, and thought bubbles can be added to indicate what people are thinking (but not saying) during the scene. Thought bubbles provide a nice way for the therapist to provide perspective of what people are likely to be thinking but not necessarily saying during a situation exchange or interaction. After the therapist feels the child has processed the social situation and the perspectives of those involved, the

feels the child has processed the social situation and the perspectives of those involved, the therapist then can ask the child to summarize the situation and provide solutions to the problems the child is likely to face when they later participate in similar situations.

Efficacy Information  There have been no experimental studies presenting quantitative data demonstrating the efficacy of comic strip conversations for students with ASDs. Two reports (Pierson and Glaeser 2007; Rogers and Myles 2001) presented brief descriptions of the perceived efficacy of comic strip conversations that were used to increase prosocial behaviors of individuals with ASDs. Pierson and Glaeser reported qualitative data suggesting comic strip conversations increased peer interactions

Glaeser reported qualitative data suggesting comic strip conversations increased peer interactions and decreased loneliness for three children with ASDs. Rogers and Myles reported that comic strip conversations appeared to be more effective (as measured by teacher count of the number of redirections for desired behavior) than social stories for helping a 14-year-old boy with Asperger’s disorder navigate to PE class. Clearly, more research on the efficacy of comic strip conversations is needed

navigate to PE class. Clearly, more research on the efficacy of comic strip conversations is needed before the technique can be considered an evidence-based practice.

Outcome Measurement  Comic strip conversations are typically writing for individual children targeting specific behaviors. Therefore, outcome measurement is likely to focus on behavioral measures of the target behaviors. Since theory of mind is often targeted, some measures of theory of mind (e.g., faux pas tasks, strange stories, false-belief tasks) might be used to assess the impact of the intervention technique on this construct.

Qualifications of Treatment Providers  There are no formal qualifications (i.e., credentials, licensure) necessary for using comic strip conversations. There is a brief manual (Gray 1994) providing basic guidelines for using the intervention. Additional practice parameters have also been published (Glaeser et al. 2003; Rogers and Myles 2001). What is necessary is that the interventionist has knowledge about how social deficits in ASDs are manifested and how autism can limit an individual’s

knowledge about how social deficits in ASDs are manifested and how autism can limit an individual’s ability to interpret social situations and function independently in a typical social milieu and the ability to integrate that knowledge into meaningful examples of how one can improve their social behavior. Parents, psychologists, special education teachers, and speech-language pathologists are typical groups of interventionists that might use comic strip conversations.

See Also ▶Social Skill Interventions ▶Social Stories ▶Theory of Mind  Comics ▶Visual Narrative Comprehension  Command ▶Mands  Comment ▶Protodeclarative  Commercial Hair Analysis ▶Hair Analysis  Common Disease-Common Variant Hypothesis  Synonyms CDCVH  Definition  The Common Disease-Common Variant Hypothesis (CDCVH) is a hypothesis that proposes if a disease that is heritable is common in the population (a prevalence greater than 1–5%), then the genetic contributors – specific variations in the

(a prevalence greater than 1–5%), then the genetic contributors – specific variations in the genetic code – will also be common in the population. It makes this prediction for diseases whose genetic contribution is believed to come from multiple genes simultaneously, polygenic disorders. Autism is thought to be such a disorder.

The CDCVH is based on evidence from evolutionary theory, specifically that all humans today descended from a small population of roughly 10,000 individuals in Africa a relatively short time ago, approximately 100,000 years ago. Based on evidence about how frequently new mutations enter the population, it states that the extremely rapid population expansion that has occurred over a short period disseminated disease alleles (genetic changes or variations) that were common in the original

disseminated disease alleles (genetic changes or variations) that were common in the original population at a far greater rate than new mutations have introduced such alleles. Therefore, genetically influenced diseases that are common today should be the result of disease alleles that were common in the original population and should still be common in today’s population, as they would have been widely distributed by the massive population explosion faster than new disease alleles could be

widely distributed by the massive population explosion faster than new disease alleles could be introduced.

Several types of studies can be undertaken to identify common genetic variants contributing to common disease. The most reliable of these is called a genome-wide association study (GWAS). These evaluate common genetic variations, often in the form of single nucleotide polymorphisms (SNPs), at every gene in the genome simultaneously. Such studies have reproducibly identified common genetic risks for a wide range of common medical conditions. However, there have only been a small number of cases

a wide range of common medical conditions. However, there have only been a small number of cases in which these common genetic variations explain a substantial proportion of the overall predicted genetic risks for the disorder. As a result, some have put forth a competing hypothesis, the Common Disease-Rare Variant Hypothesis, that states that common diseases may be explained by a multiplicity of individually rare disease alleles in the population.

With regard to autism, several GWAS studies have been conducted, and, so far, three SNPs have been found that meet criteria for significance, taking into account the fact that the entire genome has been evaluated simultaneously. However, none of the three studies replicate the others’ findings, and combining the data from all three decreases the evidence for any one of these genetic markers being associated with autism spectrum disorders. While it is expected that common genetic polymorphisms

associated with autism spectrum disorders. While it is expected that common genetic polymorphisms carry risks for ASD, there is not yet agreement that any particular variation or gene has been definitively identified.

See Also ▶Common Disease-Rare Variant Hypothesis ▶DNA ▶Genetics ▶Genome-wide Association  Common Disease-Rare Variant Hypothesis  Definition  The Common Disease-Rare Variant Hypothesis (CDRVH) hypothesizes that if a disease with genetic causes is common in the population (a prevalence greater than 1–5%), then the genetic causes – specific genetic errors (genetic variants or disease alleles) – will not necessarily be found to be common in the population as suggested by the competing Common

– will not necessarily be found to be common in the population as suggested by the competing Common Disease-Common Variant Hypothesis (CDCVH) but rather will be comprised of a multiplicity of risk alleles, each of which is individually rare in the population. It makes this prediction for diseases whose genetic contribution is believed to come from multiple genes simultaneously, polygenic disorders. Autism is thought to be such a disorder.

The CDRVH states that common polygenic disorders may reflect the convergence of multiple, rare variations in the same gene (allelic heterogeneity) or multiple genes (locus heterogeneity). Given a sufficiently large number of disease alleles that could be involved, individually rare mutations could accumulate in the population and account for a significant proportion of a common disorder. Such variation could be transmitted from generation to generation or occur as new mutations (also known as de

could be transmitted from generation to generation or occur as new mutations (also known as de novo mutation). The latter would give rise to a pattern of inheritance prevalent in autism, where cases are often sporadic (only a single child is affected in a family) and identical (monozygotic) twins share the disorder much more frequently than nonidentical (dizygotic twins).

Proponents of the CDRVH have recently been able to cite considerable empiric evidence supporting this hypothesis. First, to date, it has been difficult to confirm the presence of common variants contributing risk for ASD. Several contemporary well-controlled association studies have implicated biologically plausible candidate genes, including the MET oncogene, Contact-Associated Protein Like 2, Cadherin 9 and Cadherin 10, Semaphorin 5A, and MACRO domain containing 2 (State and Levitt 2011).

Cadherin 9 and Cadherin 10, Semaphorin 5A, and MACRO domain containing 2 (State and Levitt 2011). However, at present, the field has not reached a clear consensus about which of these genes or loci carry definitive risks. More importantly, were all of these association signals to confirmed, they would nonetheless account for only a small proportion of the predicted genetic contribution to ASD. Perhaps, more importantly, to date, studies of rare variation have begun to demonstrate that a measurable

more importantly, to date, studies of rare variation have begun to demonstrate that a measurable proportion of the ASD-affected population carries very rare genetic mutations, either in the structure or sequence of the DNA, contributing biological effects that are much larger than those so far associated with common variants. For example, current estimates are that 5–10% of affected individuals carry large de novo copy number variations (CNVs) that substantially increase the risk for ASD (and

carry large de novo copy number variations (CNVs) that substantially increase the risk for ASD (and other neurodevelopmental disorders). In addition, a measurable proportion of individuals with ASD can be found to have mutations in FMRP, TSC-1, TSC-2, or other rare so-called monogenic forms of autism. Finally, with the advent of new DNA sequencing tech- nology, it is anticipated that additional individuals will be found carrying rare and de novo single nucleotide variants (SNVs) contributing

individuals will be found carrying rare and de novo single nucleotide variants (SNVs) contributing relatively large risks. All told these findings provide substantial evidence in favor of the CDRVH in a proportion of individuals with social disability. It is important to recall, however, that in a genetically heterogeneous disorder such as autism, the contribution of rare variants does not rule out the potential contribution of common variants, either with respect to etiology or as a factor

out the potential contribution of common variants, either with respect to etiology or as a factor modifying other genetic and environmental risks.

See Also ▶Candidate Genes in Autism ▶Common Disease-Common Variant Hypothesis ▶Copy Number Variation ▶DNA ▶Genetics  Communication and Symbolic Behavior Scale  Synonyms CSBS; CSBS-DP  Description  The Communication Symbolic and Behavior Scales-Normed Edition (CSBS; Wetherby and Prizant 1993) is a norm-referenced, standardized test designed to assess infants, toddlers, and preschoolers that are at risk for communication delays. In addition, this measure is used to establish a profile of

are at risk for communication delays. In addition, this measure is used to establish a profile of communicative, symbolic, and social-affective functioning of a child, to monitor behavior change over time, and to provide a direction for intervention. The assessment surveys both language skills and symbolic development, including gestures, facial expressions, and play, using 22 5-point rating scales (18 in the communicative domain, 4 in the symbolic domain). This measure can be used with infants

(18 in the communicative domain, 4 in the symbolic domain). This measure can be used with infants and toddlers with functional communication ages of 6–24 months and children up to 72 months exhibiting atypical development. It can be administered by a speech-language pathologist (SLP), psychologist, early interventionist, and other professional trained to work with developmentally young children. As a part of this assessment, parents or caregivers complete a Caregiver Questionnaire, providing

As a part of this assessment, parents or caregivers complete a Caregiver Questionnaire, providing background information that can be utilized as a baseline for evaluation. The evaluator samples the child’s communicative behaviors in structured and unstructured play-based activities in the child’s natural environment. Communicative temptations, sharing books, symbolic play, language comprehension, and constructive play activities are utilized to encourage spontaneous communicative and play

and constructive play activities are utilized to encourage spontaneous communicative and play behaviors. Ideally, the sample is videotaped, so as to continue natural interactions during the assessment and to ensure accurate scoring and analysis. This test takes approximately I hour to administer and 1 hour to score the videotape. The Caregiver Questionnaire takes about 15 min to complete.

The Communication Symbolic and Behavior Scales-Developmental Profile (CSBS-DP; Wetherby and Prizant 2002) is the companion test to the CSBS that is designed to evaluate communication and symbolic abilities of children in the same age range as the CSBS-Normed Edition. However, this test is intended as a guide to indicate areas that may need further assessment or to monitor behavior change. This test includes a one-page Infant-Toddler Checklist for screening, a four-page Caregiver Questionnaire,

includes a one-page Infant-Toddler Checklist for screening, a four-page Caregiver Questionnaire, and Behavior Sample, which is a shorter, more streamlined version of the CSBS-Normed Edition. It should be noted that the CSBS-DP should not be used alone for decisions about program planning. The CSBS-Normed Edition is a more in-depth tool and is designed for making program-planning decisions. The CSBS-DP takes about 30 min to administer, and the Behavior Sample can be scored during the sample or

takes about 30 min to administer, and the Behavior Sample can be scored during the sample or videotaped. The Infant-Toddler Checklist can be completed in 5–10 min, and the Caregiver Questionnaire can be completed in about 20 min.

Historical Background  In 1986, the passage of the Education of the Handicapped Act, Amendments of 1986 (PL 99-457) provided funds to states that chose to develop and implement early identification and intervention services for infants and toddlers beginning in 1991. This included children that were at high risk or children up to their third birthday that had identified disabilities, including delays in speech and language. Often, speech-language delay is the first symptom of developmental delay

in speech and language. Often, speech-language delay is the first symptom of developmental delay that parents or professionals notice. Unfortunately, however, early identification was compromised by the limited number of standardized tools for assessing very young children. Early identification of these delays or lack of speech-language development is crucial, as typical early language development occurs between 12 and 20 months of age. The detrimental effects of early speech and language

occurs between 12 and 20 months of age. The detrimental effects of early speech and language disorders on later development of peer relations, educational success, as well as emotional and behavioral development have also been well documented in the research (Prizant et al. 1990). Most formal tests used to measure children’s communication abilities are clinician-directed and focus on the child as a responder. There were few tests available that sampled communication, especially communicative

as a responder. There were few tests available that sampled communication, especially communicative intent, in a naturalistic way. Communication sampling is needed to supplement formal testing for children who are preverbal or at an early verbal communication stage (Wetherby et al. 1988). Therefore, the CSBS was developed to allow for an informal communication sample. With the implementation of PL 99-457, it was critical that clinicians utilize informal sampling procedures in their assessment

PL 99-457, it was critical that clinicians utilize informal sampling procedures in their assessment process.

The sampling procedures were developed and refined over a 10-year period. Pragmatic and social interactive theories from the 1970s and 1980s (Bloom and Lahey 1978) were utilized to make changes to the sampling procedures. Procedures including the presentation of communicative temptations or structured situations that encourage or entice a child to communicate were adapted from informal procedures to sample communication (Wetherby and Prizant 1989). This included an assessment of both

procedures to sample communication (Wetherby and Prizant 1989). This included an assessment of both communicative functions and communicative means. Sharing books, which was a temptation originally reported by Wetherby and Prutting (1984), was later considered separate from the communicative temptations, as it is less structured than the other included temptations. Reciprocity and social-affective signaling are also assessed as a part of this tool. Addition of these areas of assessment was

signaling are also assessed as a part of this tool. Addition of these areas of assessment was based on the work of Stern (1985) and Tronick (1989) in socioemotional development. The communication sample provides a way to measure expressive language abilities, and a small measure of language comprehension was also added. These items were adapted from the work of Miller, Chapman, Branston, and Reichle (1980).

Play skills, both symbolic and constructive, were included in the sample, and toy sets were chosen for children that were developmentally appropriate for children 8 months to 24 months. The development of the symbolic scales was influenced by the model for emergence of symbols (Bates 1979) and based on theories of Piaget (Wetherby 1991).

The CSBS-DP (Wetherby and Prizant 2002) Infant-Toddler Checklist and the CSBS-DP Caregiver Questionnaire were adapted from the CSBS Caregiver Questionnaire (Wetherby and Prizant 1993) and from research on the MacArthur Communicative Development Inventories (CDI; Fenson et al. 1993, 1994). Studies indicate that parent report is a reliable measure of communication development, and a checklist format was chosen, as this method is more accurate than a diary or free-form format (Fenson et al.

format was chosen, as this method is more accurate than a diary or free-form format (Fenson et al. 1993). The items on the CSBS-DP Caregiver Questionnaire were based on the CSBS-Normed Edition Caregiver Questionnaire (Wetherby and Prizant 1993). The questions on the CSBS-DP Caregiver Questionnaire are meant to gather similar information to that which is gathered from the Behavior Sample. The words expressed and understood were based on the work of Fenson et al. (1994) and were the first 36 words

expressed and understood were based on the work of Fenson et al. (1994) and were the first 36 words reported with highest frequency on the MacArthur CDI. The CSBS-DP Behavior Sample was based on the CSBS Behavior Sample (Wetherby and Prizant 1993). However, it was modified by reducing the length of the sample. The scoring procedures were reduced from 23 to 20 scales, which simplified the scoring and enabled the evaluator to score during the observed interactions. Nineteen of the 20 scales were

and enabled the evaluator to score during the observed interactions. Nineteen of the 20 scales were derived from the CSBS; however, the gaze/point-following scale was added based on research findings from Mundy, Kasari, Sigman, and Ruskin (1995).

Psychometric Data  The CSBS-Normed Edition (Wetherby and Prizant 1993) was developed and tested over several years with both normally developing children and children with language delays. This research edition of this test was standardized in 1990 and 1991. The videotaped samples were scored by a group of raters that were trained by the authors. Before beginning the rating for the norming study, they rated two additional tapes to calibrate with ratings of an experienced coder. The samples

they rated two additional tapes to calibrate with ratings of an experienced coder. The samples were taken for 282 children from 24 sites in the United States. The norming sample was weighted for scaling and norming analyses. Information about the sample provided in the manual includes age in months, linguistic stage, gender, race, and Spanish origin. Since the CSBS was intended to monitor a child’s progress over several months, one-third of the sample were retested once within 2–3 months of the

progress over several months, one-third of the sample were retested once within 2–3 months of the first administration.

Norms were developed by making the 22 scales comparable by converting individual raw scores to a common metric based on the sample. This was done by deriving percentile ranks of raw scores on each scale based on the frequency distributions of these scores for the weighted sample between 8 and 24 months of age. Cluster scores were established that were based on summing of the scaled scores. The scaled scores for the 18 communication scales were summed to create a larger cluster score, the

The scaled scores for the 18 communication scales were summed to create a larger cluster score, the communication composite. The communication score and all cluster scores are expressed as percentile ranks. Means and standard deviations of raw scores and sums of scaled scores by language age and total unweighted scores are provided in the manual.

Reliability of this measure is reported using four common methods. Internal consistency, the degree to which the parts of the instrument measure the same characteristic, yielded a coefficient of 0.91 for the entire sample and 0.84 for children at the multiword stage. Stability, the consistency of the test and retest results for individual test participants whose performance has not changed, is provided. Test-retest scores are provided for all age intervals, including shorter intervals (less

provided. Test-retest scores are provided for all age intervals, including shorter intervals (less than 2 months) and longer intervals (greater than 2 months). Correlations between the test and retest scores for the shorter and longer interval subgroups are also provided. Taken together, this information indicates that the CSBS produces relatively stable rankings when children make significant improvements over shorter periods of time. Interrater reliability coefficients are also provided. Raters

over shorter periods of time. Interrater reliability coefficients are also provided. Raters following the CSBS training steps can achieve good agreement with other raters and experienced raters. Standard errors of measurement (SEMs) are provided for all cluster standard scores and communication-composite scores, along with details on confidence ranges. Demonstration of validity is provided, including face validity/ecological validity, criterion-related validity, and construct validity. Further, a

face validity/ecological validity, criterion-related validity, and construct validity. Further, a complete assessment of gender differences in test outcomes is included in the manual. Studies of the CSBS demonstrate sensitivity and valid norms (Goodwyn and Cruz 1997) and suggest that the instrument has good predictive validity (McCathren et al. 2000).

The CSBS-DP (Wetherby and Prizant 2002) Preliminary Research Edition was developed and field tested with children younger than 24 months of age and was standardized between 1997 and 2000. Collection of Infant-Toddler Checklists, Caregiver Questionnaires, and Behavior Samples was used to derive norms. Raters were trained in the same way as was utilized for the norming of the CSBS. A total of 2,188 Infant-Toddler Checklists, 790 Caregiver Questionnaires, and 337 Behavior Samples were included for

Infant-Toddler Checklists, 790 Caregiver Questionnaires, and 337 Behavior Samples were included for the standardization sample from eight sites in the United States and two sites in Canada. A majority of the United States’ sample was recruited primarily from Tallahassee, Florida; therefore, the sample is not nationally representative. Information about the sample by age, gender, race and ethnicity, and parent age and ethnicity is included in the manual. Norms were procedurally derived in the

and parent age and ethnicity is included in the manual. Norms were procedurally derived in the same way as the CSBS. All reliability measures including internal consistency, SEMs and confidence intervals, test-retest reliability, and interrater reliability are included in the manual. Validity measures including content, face, construct, criterion, concurrent, and predictive validity are provided. The CSBS-DP shows good reliability and validity, indicating it is a good screening and evaluation

The CSBS-DP shows good reliability and validity, indicating it is a good screening and evaluation tool for use with children between 6 and 24 months of age. Recent research indicates the concurrent and predictive validity of this instrument to be strong, and the findings support the use of this instrument in the screening and evaluation of young children (Wetherby et al. 2003).

Clinical Uses  The CSBS-Normed Edition (Wetherby and Prizant 1993) was designed to be used for early identification of children who have or are at risk for developing communication impairment. In addition, it was intended to establish a profile of communication, symbolic, and social-affective functioning. For this reason, the test helps early intervention providers to gauge further evaluation needs, to prioritize intervention goals, and to monitor progress. In the manual, there are guidelines

to prioritize intervention goals, and to monitor progress. In the manual, there are guidelines for using the results of this profile in intervention planning, goal setting, and designating intervention contexts. Areas addressed include expanding the use of social-affective signals, enhancing reciprocity, expanding the range of communicative functions, increasing the sophistication of communicative means, and enhancing symbolic level. The use of this profile is recommended to assign relative

means, and enhancing symbolic level. The use of this profile is recommended to assign relative strengths and challenges in the areas listed above and to provide an individualized approach to prioritizing goals. It is suggested that the communicative profile be compared to the symbolic profile and to design-focused activities utilizing developmentally age-appropriate toys and objects. The child’s behavior displayed during the structured activities of the CSBS should be compared to the child’s

behavior displayed during the structured activities of the CSBS should be compared to the child’s functioning in less structured environments. The authors suggest that activities that contain increased communicative demands should be planned with the child’s strengths in mind. Naturalistic activities that allow for generalization of learning and communication skills are also recommended. Since the CSBS-DP (Wetherby and Prizant 2002) is intended as a guide to indicate areas that may need further

CSBS-DP (Wetherby and Prizant 2002) is intended as a guide to indicate areas that may need further assessment or to monitor change in behaviors, the CSBS-DP should not be used alone for decisions about program planning.

See Also ▶Early Intervention ▶MacArthur-Bates Communicative Development Inventories, Second Edition ▶Mullen Scales of Early Learning ▶Normative Data ▶Reciprocal Communication/Interaction ▶Standardized Tests  Communication and Symbolic Behavior Scales – Developmental Profile ▶Infant/Toddler Checklist  Communication and Symbolic Behavior Scales – Normed Edition (2003)  Abbreviation CSBS  Description  The Communication and Symbolic Behavior Scales (CSBS; Wetherby and Prizant 2003) looks at the

The Communication and Symbolic Behavior Scales (CSBS; Wetherby and Prizant 2003) looks at the communicative, social-affective, and symbolic abilities of children whose functional communication age is between 8 months and 2 years. Its purpose is to assess infants, toddlers, and preschool children, and it may be used with children whose chronological age ranges from about 8 months to 5–6 years, if their developmental age is younger than 24 months. The CSBS provides quantitative and qualitative

their developmental age is younger than 24 months. The CSBS provides quantitative and qualitative information about a child’s communicative and symbolic abilities.

The CSBS contains three formal tests: the CSBS Caregiver Questionnaire, the CSBS Behavior Sample, and the Caregiver Perception Rating form. The CSBS Caregiver Questionnaire gains information from the caregiver regarding the child’s communication and symbolic abilities and can be administered prior to the child’s direct assessment. The questionnaire can be completed in about 15–20 min. The CSBS Behavior Sample is a play-based sampling procedure. It is broken up into six sampling contexts:

Behavior Sample is a play-based sampling procedure. It is broken up into six sampling contexts: warm-up, communicative temptations, sharing books, symbolic play probes, language comprehension probes, and constructive play probes. This takes about 1 h to complete and must be videotaped to complete scoring. A trained evaluator can then score the videotape in about 1 h. Immediately following the Behavior Sample, the caregiver should be asked to complete the Caregiver Perception Rating form. The

Sample, the caregiver should be asked to complete the Caregiver Perception Rating form. The caregiver rates the typicality of their child’s behavior as observed during the Behavior Sample. The examiner may choose to interview the caregiver using this form as an alternative option.

The CSBS kit includes the CSBS Manual, a carrying bag with materials for the CSBS Behavior Sample, two instructional videotapes for the Behavior Sample that demonstrate the sampling procedures and scoring guidelines, Record Forms for scoring and reporting results, and the CSBS Caregiver Questionnaire. The materials included that are used during the CSBS Behavior Sample are action-based toys to get spontaneous communication, books for young children, and play materials that are used to see how

spontaneous communication, books for young children, and play materials that are used to see how a child uses and plays with objects symbolically and constructively.

The behaviors observed during the CSBS Behavior Sample are rated according to 22 5-point scales. These scales measure the following parameters, which are summarized in seven cluster scores: Communicative Function (scales 1–3) which examines (1) behavior regulation, (2) joint attention, and (3) sociability of communicative function; Communicative Means-Gestural (scales 4–6) which examines (4) conventional gestures, (5) distal hand gestures, and (6) coordination of gestures and vocalizations;

gestures, (5) distal hand gestures, and (6) coordination of gestures and vocalizations; Communicative Means-Vocal (scales 7–10) which examines (7) vocal acts without gestures, (8) inventory of different consonants, (9) syllables with consonants, and (10) multi-syllables; Communicative Means-Verbal (scales 11–12) which examines (11) inventory of different words expressed and (12) inventory of different word combinations; Reciprocity (scales 13–15) which examines (13) respondent acts, (14) rate

word combinations; Reciprocity (scales 13–15) which examines (13) respondent acts, (14) rate of communicative acts per minute, and (15) repair strategies; Social-Affective Signaling (scales 16–18) which examines (16) gaze shifts, (17) shared positive affect, and (18) episodes of negative affect; and Symbolic Behavior (scales 19–22) which examines (19) language comprehension, (20) inventory of different action schemes, (21) complexity of action schemes, and (22) constructive play.

The CSBS records three types of scores: raw scores, scaled scores, and normed scores. Raw scores and equivalent scaled scores are reported for the 22 CSBS Behavior Sample scales. Converting raw scores to scaled scores can be done using the Record Form. The scaled scores have a mean of 3 and a standard deviation of 1. Normed scores are reported for the seven clusters and for the communication composite score. Normed scores reflect the performance of children in the standardization sample both by

score. Normed scores reflect the performance of children in the standardization sample both by 1-month intervals from 8 to 24 months and by language stage from prelinguistic to multiword. The Communication Composite is a sum of the scaled scores for scales 1–18. The scaled scores of the Communication Composite must be converted to an age-based or stage-based percentile rank and standard score scale that has a mean of 10 and a standard deviation of 3. Since the Communication Composite scores have

that has a mean of 10 and a standard deviation of 3. Since the Communication Composite scores have a large range and precision, the composite may also be converted to an expanded standard score scale that is widely used for composite scores on other test batteries with a mean of 100 and a standard deviation of 15. The CSBS Caregiver Questionnaire reports cluster raw scores for emotion and eye gaze, communication, gestures, sounds, words, understanding, and object use. The Caregiver

and eye gaze, communication, gestures, sounds, words, understanding, and object use. The Caregiver Questionnaire also reports a social composite score, a speech composite score, and a symbolic composite score. The social composite score is a sum of the raw scores for emotion and eye gaze, communication, and gestures. The speech composite score is a sum of the raw scores for sounds and words. The symbolic composite score is a sum of the raw scores for understanding and object use.

Historical Background  The purpose of developing the CSBS was to provide an assessment tool for young children that were more representative of current research to identify and assess language and communication delays and disorders at an early age. As stated in the Individuals with Disabilities Education Act (IDEA) Amendments of 1991, and the Handicapped Act Amendments of 1986, a priority is to provide early identification and intervention services for at-risk infants and toddlers. The US

to provide early identification and intervention services for at-risk infants and toddlers. The US Department of Education (1987) note that about 70% of preschool children with developmental disabilities have language and communication disorders, which highlights the need to develop assessments aimed toward the early identification of these children. Early identification and appropriate interventions can be an overarching factor to a child’s future educational achievements and overall development

can be an overarching factor to a child’s future educational achievements and overall development (Wetherby and Prizant 2003). The most widely used communication and language assessment instruments for pre-linguistic and early linguistic children emphasize the form of communication, rather than the intentions that are expressed with these forms. Previously used instruments are mostly clinician-directed, limiting the observations of initiated and spontaneous communication used by a child.

limiting the observations of initiated and spontaneous communication used by a child. Language sampling has become more widely used in place of formal language measures for children who engage in conversation. Similarly, communication sampling can be used to supplement children in the preverbal or early verbal stages as it provides a naturalistic environment for assessment (Wetherby and Prizant 2003). This need brought forth the development of the current version of the CSBS that was first made

This need brought forth the development of the current version of the CSBS that was first made as an informal procedure for sampling communication with preverbal children. The sampling procedures in the CSBS derived from pragmatic and social interaction theories that aimed to mirror a natural, ongoing adult-child interaction, to provide many opportunities for multiple communicative behaviors. The assessment was standardized and normed in response to the need for a more naturalistic assessment

assessment was standardized and normed in response to the need for a more naturalistic assessment environment and the implementation of the IDEA principles to evaluate young children (Wetherby and Prizant 2003).

An initial version of the Communication and Symbolic Behavior Scales-Normed Edition was published in 1993. The previous version of the complete assessment has been changed over time, as scales that proved to be less reliable or discriminating were removed or revised. The Communication and Symbolic Behavior Scales-Developmental Profile (CSBS-DP) was then published in 2002; it is designed as a shortened version of the assessment and includes an Infant-Toddler Checklist. The Communication and

shortened version of the assessment and includes an Infant-Toddler Checklist. The Communication and Symbolic Behavior Scales-Normed Edition (2003) is the current version of the test that is commonly administered today.

Psychometric Data  The CSBS was standardized in 1990 and 1991, collecting behavior samples of communication and symbolic behaviors from typically developing children and children with delays. Professional scorers were trained to analyze and rate communication and symbolic behavior through videotaped behavior samples gathered from 282 children. This sample was used to create the norms for the assessment. Children in the standardization sample were recognized by their linguistic stage, gender,

Children in the standardization sample were recognized by their linguistic stage, gender, race, and Spanish origin. Based on the age of the children in the sample, standard deviations and percentile ranks were created to indicate the level of performance at each linguistic stage.

Reliability is reported through measures of internal consistency, stability, and interrater reliability. The internal consistency coefficients reported for the CSBS range from a low of 0.17 for Social-Affective Signaling to a high of 0.91 for Communicative Means-Vocal. The coefficient for the composite is 0.91, indicating strong internal consistency for a total score. Stability was assessed on 66 of the total children participants through a process of test-retest. As expected, correlation of

66 of the total children participants through a process of test-retest. As expected, correlation of scores was higher for shorter intervals, and effect sizes for the 22 scales are provided, revealing small to medium changes. The authors suggest these changes are likely due to natural period of growth. The interrater reliability was demonstrated by comparing the ratings of 22 children as assessed by 3 raters, which showed good agreement, ranging from 0.83 to 0.90. Standard error of measurement

by 3 raters, which showed good agreement, ranging from 0.83 to 0.90. Standard error of measurement has been calculated and provided for all cluster standard scores as well as the composite score. The construct validity confirms patterns of scores that increased on nearly all 22 scales across selected age intervals, aligning to established developmental expectations. The established means and standard deviations from the raw scores are consistent with known patterns for improvement in

and standard deviations from the raw scores are consistent with known patterns for improvement in communication and symbolic behaviors during the period of early development.

Clinical Uses  The CSBS can be used for clinical purposes by providing quantitative and qualitative information of a child’s communicative, social-affective, and symbolic abilities between the ages of 8 months and 2 years. Specific strengths of the assessment include the ability to capture observation and measurement in the areas of joint attention and intentional communicating. A unique feature of this assessment is that it provides a variety of opportunities for spontaneous initiations of

of this assessment is that it provides a variety of opportunities for spontaneous initiations of communication, including acts for initiating joint attention (Dos Santos 2009). Joint attention and intentional communication are key areas of deficit in individuals with ASD. The CSBS is a sensitive measure to specific social deficits observed in children with ASD (Wetherby and Prizant 2002).

Research on children with autism spectrum disorder (ASD) has shown how the clinical use of CSBS can be helpful in early diagnoses of ASD given its focus on joint attention and initiating behaviors. For example, it is known that there is an early deficit in shared attention in children with ASD in the second year of life showing lack of appropriate gaze and fewer gaze shifts compared with children with other developmental delays (DD) and typically developing (TD) children (Charman et al. 1997;

with other developmental delays (DD) and typically developing (TD) children (Charman et al. 1997; Swettenham et al. 1998; Wetherby et al. 2004, 2007; Shumway and Wetherby 2009). Additionally, children with ASD evidence a lack of communication involving coordination of at least three of the following: gaze, facial expression, gesture, and sound (Wetherby et al. 2004; Shumway and Wetherby 2009). These well-established early signs of ASD in young children can all be measured through the CSBS and

well-established early signs of ASD in young children can all be measured through the CSBS and thus has the potential to assist in early diagnosis.

This assessment allows a child’s communication and symbolic behavior, which can potentially be missed in other communication assessments, to be measured in different areas based on a clinician’s perspective as well as the parent and/or caregiver’s perspective. The in-depth nature of this assessment provides quantitative and qualitative information about the child’s abilities. The assessment can be administered in a naturalistic environment to observe the child’s natural play and allows for

be administered in a naturalistic environment to observe the child’s natural play and allows for multiple developmental domains to be observed in one sitting through an hour of play. This assessment may take a long time to score based on the video of the Behavior Sample. Fortunately, the authors have developed the CSBS-DP to create a shorter and easier to use tool to screen and assess young children for early delays, whereas the full CSBS assessment takes twice as long to administer and score

for early delays, whereas the full CSBS assessment takes twice as long to administer and score and does not provide a checklist that can be used as a screening tool by other medical professionals. The Infant-Toddler Checklist found in the CSBS-DP can be used in clinical practice by a variety of health professionals such as pediatricians and child health nurses to identify infants and toddlers most at risk for a communication delay that may require a referral and further assessment (Eadia et al.

at risk for a communication delay that may require a referral and further assessment (Eadia et al. 2010). Further research on the CSBS-Normed Edition (2003) would be beneficial to account for the limitations of the assessment and to look at further clinical uses.

See Also ▶Autism: Social Communication Disorder ▶Communication and Symbolic Behavior Scale ▶Symbolic Behavior  Communication Assessment  Definition  Communication assessment is the evaluation of current skills in speech, language, syntax, semantics, morphology, and pragmatics. It is an important process for gathering information to answer questions and make intervention decisions (Schwartz et al. 2001). Importantly, too, the role of assessment extends beyond making diagnoses and identifying

al. 2001). Importantly, too, the role of assessment extends beyond making diagnoses and identifying skill deficits. A comprehensive communication assessment helps pave the way for intervention planning. As communication is often an area of difficulty for children with autism, communication assessment is essential in identifying and ultimately addressing the needs of these children to ensure future communicative success. The goal of communication assessment is to evaluate a child’s current level

communicative success. The goal of communication assessment is to evaluate a child’s current level of communicative skills across various settings and with different partners. Factors included in the assessment of communication are engagement and attention skills, nonverbal behaviors and gestures, and speech and language form and content. Since communication difficulties and pragmatic challenges plague the ability of children with autism to engage in reciprocal exchanges with their communicative

the ability of children with autism to engage in reciprocal exchanges with their communicative partners, it is important to create profiles of communication strengths and challenges to increase understanding of the critical connections between assessment and intervention planning.

There are several screening and diagnostic tools specific to communication that can be used to assess a broad range of skills in children with autism spectrum disorders (ASD). Comprehensive measures are designed to detect problems across speech and language domains, including:
*   Receptive and expressive semantic development (assessing vocabulary understanding and expression)

*   Receptive and expressive morphosyntactic development (assessing the ability to understand and produce words and sentences)
*   Articulation (assessing speech sound production) *   Phonology (assessing the ability to use speech sounds in systematically organized manner)
*   Fluency (assessing the smoothness and flow of producing speech) *   Cognitive processes (assessing working memory skills important to the development of language

*   Metalinguistic processes (assessing rhyming and word segmentation abilities critical to the development of language and literacy)

Notably, many communication assessment tools can be used as both screening and identification or diagnostic measures. Although there are comprehensive assessment tools for communication, there are also domain-specific tools for language comprehension, receptive and expressive vocabulary, pragmatics, articulation, etc., which provide a more detailed examination of a particular area of language development that may be a specific area of challenge for a child with ASD.

Once a diagnosis has been made, the assessment process is not complete until the clinician can profile a child’s communication strengths and challenges. Profiling the communication of a child with ASD allows the speech-language pathologist as well as the team, including the family, to develop a more holistic and comprehensive view of the child (Prelock 2006). Creating a communication profile is particularly important for prioritizing communication goals and implementing a developmentally and

particularly important for prioritizing communication goals and implementing a developmentally and individually appropriate curriculum (Prelock 2006; Wetherby et al. 2000). Communication profiling requires the clinician to design situations which facilitate a child’s ability to communicate and observing what a child does verbally and nonverbally in those situations. An assessment of joint attention is critical as is defining the various gestures, sounds, and words that characterize the child’s

is critical as is defining the various gestures, sounds, and words that characterize the child’s repertoire (Prelock 2006). Specific assessment strategies are employed for those children with limited or absent verbal skills and those with unconventional verbal behavior. For verbal children and ado- lescents with ASD, a communication profile needs to carefully evaluate pragmatic language with several communication partners and across a variety of settings. Profiling pragmatic communication in more

communication partners and across a variety of settings. Profiling pragmatic communication in more verbal children with ASD requires an assessment of communicative intent, use of presupposition, and social discourse.

Speech-language pathologists are primarily responsible for the assessment of communication and can provide activities within the home, school, and community to help facilitate communication development and monitor progress (Prelock et al. 2013).

To ensure that a child receives the full benefit of an intervention program, there must be a link between the comprehensive communication assessment (including a profile of communication strengths and challenges) that is completed and the communication goals and curriculum that are established for a child with ASD.

See Also ▶Grammar ▶Paralinguistic Communication Assessment ▶Pragmatics ▶Prelinguistic Communication Assessment ▶Speech ▶Speech Morphology ▶Syntax  Communication Board  Synonyms Assistive devices; Augmentative and alternative communication (AAC) device; No-tech communication device; Picture board

Definition  A communication board is a low-tech communication aid that is used in the field of augmentative and alternative communication (AAC). Typically, a grid with pictures on it is created, printed, and then affixed to something like a sturdy manila envelope. This type of assistive communication device is best for individuals with limited verbal output who are either preliterate or nonliterate. The communication board user will point to pictures to communicate wants and needs, to make

The communication board user will point to pictures to communicate wants and needs, to make comments, or to ask questions. See Beukelman and Mirenda (2012) for a detailed description of no- and low-tech communication devices and their implementation.

See Also ▶Alternative Communication ▶Assistive Devices ▶Voice Output Communication Aids  Communication Disorder ▶Speech/Communication Disabilities  Communication Disorder/Communication Impairment  Synonyms Communication impairments  Short Description or Definition  A communication disorder is a developmental or acquired impairment which generally affects language, speech, and/or hearing (National Institute on Deafness and Other Communication Disorders [NIDCD] 2010). The American

(National Institute on Deafness and Other Communication Disorders [NIDCD] 2010). The American Speech-Language-Hearing Association (ASHA) (1993) describes communication disorders more specifically, as impacting one’s ability to “receive, send, process, and comprehend concepts or verbal, nonverbal and graphic symbol systems (p. 2).” These impairments may include, but are not limited to, problems with fluency, articulation, phonology, voice, auditory processing, pragmatics, syntax, semantics,

with fluency, articulation, phonology, voice, auditory processing, pragmatics, syntax, semantics, morphology, and hearing loss (American Speech-Language and Hearing Association [ASHA] 2008; NIDCD 2010; Rochester Hearing and Speech Center [RHSC] 2011). Communication disorders generally fall on a continuum of severity, ranging from relatively mild to profound depending on the complexity of the impairment and which processes of communication are affected (ASHA 1993). Individuals may present with a

and which processes of communication are affected (ASHA 1993). Individuals may present with a single communication disorder or a combination of various communication disorders. Depending on the nature of each individual’s impairment, a communication disorder may be a primary disability or it may be secondary to other disabilities (ASHA 1993). A communication disorder or impairment is one of the core deficits identified for individuals with an autism spectrum disorder (American Psychiatric

the core deficits identified for individuals with an autism spectrum disorder (American Psychiatric Association 2000).

Categorization  Rather than being a disorder that can be categorized into a group with other like disorders, communication disorder is a category unto itself. Communication disorders include impairments associated with speech, language, and/or hearing, as outlined in Table 1.
 | Speech | Language | Hearing | |---|---|---| | Articulation disorders | Receptive language disorder | Sensorineural hearing loss |

| Fluency disorders | Expressive language disorder | Conductive hearing loss | | Voice disorders | Mixed receptive-expressive language disorder | Mixed hearing loss |

| | Specific language impairment | | ASHA (2008), NIDCD (2010), RHSC (2011)  Epidemiology  Given the complexity of communication disorders and the endless possibilities for presentations, it is difficult to identify a specific cause or origin. A wide variety of epidemiological studies have been conducted on the topic of communication disorders, and as the prevalence of related disorders increases, the interest in identifying the factors associated with such disorders continues to expand. Recent

the interest in identifying the factors associated with such disorders continues to expand. Recent prevalence rates found that of the 6,068,802 children in the United States being served in public schools under the Individuals with Disabilities Act (IDEA), 1,460,583 (24.1%) are receiving services for speech and/or language disorders (ASHA 2008). It is important to consider that this statistic does not account for children receiving speech and/or language services secondary to another disability

not account for children receiving speech and/or language services secondary to another disability such as autism spectrum disorders (ASD), children who do not qualify for services through the IDEA, for children who have not yet been identified, or children outside of the United States. As with many disorders and diseases, the number of individuals identified and diagnosed with communication disorders continues to grow with increasing knowledge, awareness, and skills of professionals and the

continues to grow with increasing knowledge, awareness, and skills of professionals and the general public.

It should be noted that for children to qualify for an autism diagnosis, they must exhibit a qualitative impairment in communication which may be manifested by one or more of the following: (1) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime); (2) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others;

speech, marked impairment in the ability to initiate or sustain a conversation with others; (3) stereotyped and repetitive use of language or idiosyncratic language; and/or (4) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level (American Psychiatric Association 2000). Therefore, all children with autism will have communication disorders of varying degrees that affect their ability to understand, produce, and/or use communication in an

of varying degrees that affect their ability to understand, produce, and/or use communication in an effective and efficient manner.

Natural History, Prognostic Factors, and Outcomes  Identification of communication disorders in children can be especially complex, as symptoms, particularly those related to speech and language, do not typically present in the early months of life. Furthermore, disorder characteristics vary with each unique child (Ogletree et al. 2002). That being said, research has acknowledged factors that may play a role in determining prognosis, including family history of communication disorders or

may play a role in determining prognosis, including family history of communication disorders or learning impairments, low socioeconomic status (SES), as well as familial hardships, such as single-parent households or parental substance abuse (Johnson et al. 2010). Further addressing issues of prognosis, research indicates that individuals who had early language impairments are more likely to experience unfavorable adult outcomes than those who had early speech impairments (Johnson et al.

experience unfavorable adult outcomes than those who had early speech impairments (Johnson et al. 2010).

Studies addressing outcome of communication disorders intervention have been mixed, in part due to the breadth of the topic. However, with improved identification and treatment techniques, therapy outcomes appear to be relatively positive, especially for those who were identified early and received intervention (ASHA 2008). While intervention for communication disorders often yields improvements, occasionally even complete remediation, it is essential to consider the additional confounding

occasionally even complete remediation, it is essential to consider the additional confounding factors that may inhibit the treatment of individuals with conditions such as autism. Given that autism falls on a spectrum and each person experiences varying levels of cognitive, linguistic, social, and behavioral functioning, it is difficult to make a definitive statement regarding outcome (Howlin et al. 2004).

Clinical Expression and Pathophysiology  Communication disorder is an incredibly broad category, including multiple sub-disorders related to speech, language, and/or hearing. That being said, there are many clinical features that have been identified to facilitate early detection, diagnosis, and treatment (ASHA 2008; Diehl 2003; Drew et al. 2007). Speech disorders can be characterized by atypical articulation of speech sounds, impaired fluency of speech, as well as impaired voice production

articulation of speech sounds, impaired fluency of speech, as well as impaired voice production and/or quality (ASHA 2008). Language disorders can present in various forms but are typically known to affect the comprehension or use of an individual’s language in both verbal and written forms. Within the category of language disorders, individuals can experience difficulties with the form of language, including phonology, morphology, and syntax, the content of language, otherwise known as

language, including phonology, morphology, and syntax, the content of language, otherwise known as semantics, as well as the function of language, which is often referred to as pragmatics. Disorders associated with hearing include varying degrees of hearing loss, which can affect a person’s ability to detect, comprehend, or discriminate the sounds of speech (ASHA 2008). As indicated above, communication disorders can present with any combination of impairments associated with speech, language,

disorders can present with any combination of impairments associated with speech, language, and/or hearing. In consideration of the various presentations of communication disorders as well as the importance of early identification and treatment, it is important for parents and caregivers who suspect a communication disorder to seek the guidance and support of a certified speech-language pathologist. Such a clinical professional can then determine if an evaluation and later treatment is warranted

Such a clinical professional can then determine if an evaluation and later treatment is warranted (ASHA 2008).

Evaluation and Differential Diagnosis  As with most disorders, early and accurate identification and diagnosis are essential components in effective intervention of communication disorders. Furthermore, since children with autism have difficulties with one or multiple components of communication, early assessment of communication skills is often necessary to appropriately address the needs of these children and ensure future communicative success. The goal of communication assessment is to

these children and ensure future communicative success. The goal of communication assessment is to evaluate a child’s current level of communicative skills across various settings and with different partners (Ogletree et al. 2002). Assessments utilized in the evalua- tion process can be standardized or non-standardized tools. Standardized measures, often in the form of tests, require, as the name implies, standard administration and scoring to ensure consistent and accurate interpretation of

implies, standard administration and scoring to ensure consistent and accurate interpretation of results. Non-standardized measures, such as observations and caregiver interviews, as well as some tests, allows a clinician to obtain information in a flexible and sometimes more functional manner. Ideally, both standardized and non-standardized data are obtained throughout the assessment process and can be used to plan the most effective and functional course of treatment, given each individual’s

can be used to plan the most effective and functional course of treatment, given each individual’s needs and abilities (Ogletree et al.; Wetherby and Prizant 1999). There are a great deal of components considered in the evaluation process that allow for identification of disorders as well as differential diagnosis. Some components of communication that are often assessed are ability to engage, attention skills, nonverbal behaviors, and gestures, as well as form, content, and use of speech and

skills, nonverbal behaviors, and gestures, as well as form, content, and use of speech and language.

Treatment  Equally as significant as early identification, early intervention is an important consideration when addressing communication skills. Accounting for the individualized presentation of each child with autism and given the varying levels of skills and abilities, communication intervention should be based on information obtained throughout the assessment process (Ogletree et al. 2002). Communication intervention often seeks to improve skills associated with the form, function, and

Communication intervention often seeks to improve skills associated with the form, function, and content of the communicative act, as well as engagement and attention skills, nonverbal behaviors, and gestures (Paul 2008). As communication skills fall on a continuum, there are a plethora of different intervention approaches available. Generally, clinicians should choose an intervention method which is supported with evidence-based research while also fulfilling the personal and clinical needs of

is supported with evidence-based research while also fulfilling the personal and clinical needs of the child and their family. Such approaches range from behavioral techniques, which target the functional and social behaviors related to communication, to augmentative and alternative communication aids, which utilize both high- and low-tech aids to facilitate communication (Diehl 2003; Paul 2008).

See Also ▶Expressive Language ▶Expressive Language Disorder ▶Language Disorder ▶Pragmatic Communication ▶Pragmatic Language Impairment ▶Receptive Language Disorders ▶Semantic Pragmatic Disorder ▶Social Communication ▶Speech Impairments ▶Speech/Communication Disabilities ▶Verbal Communication  Communication Impairments ▶Communication Disorder/Communication Impairment  Communication Intention Inventory  Synonyms CII  Description  The communicative intention inventory (CII) is an observational

Synonyms CII  Description  The communicative intention inventory (CII) is an observational system for recording children’s early intentional communication, including gestural, vocal, and verbal communicative behaviors, while the child is engaged in a free-play situation with a caregiver. The CII is designed to support the clinician in observing and coding the intentional communication of children functioning at the 8 to 24-month developmental level. Intentional communication is defined as a

functioning at the 8 to 24-month developmental level. Intentional communication is defined as a child’s goal-oriented, purposeful reasons for vocalizing, gesturing, and speaking. Often, particularly in the preverbal period, children’s intentions must be deduced by their behaviors in relation to objects and people. It is these preverbal intentions, and their expression in the use and coordination of gestures, vocalization, and gaze, that serve as the communicative foundation for the emergence of

gestures, vocalization, and gaze, that serve as the communicative foundation for the emergence of language.

Historical Background  When Drs. Truman Coggins and Robert Carpenter of the University of Washington first introduced the communicative intention inventory (CII) in 1981, the assessments available for describing child’s communicative intent were limited. The existing measures at that time included a small number of intentional categories used for describing children’s behaviors, inadequately described the categories presented, and provided no information to support the reliability of the

described the categories presented, and provided no information to support the reliability of the categories. The authors therefore attempted to develop the CII with good content and construct validity (i.e., with categories that are believed to adequately reflect instances of early intentional communication and the range of communicative functions involved in it).

The eight intentional categories included in the CII are: 1.  Comment on action 2.  Comment on object 3.  Request for action 4.  Request for object 5.  Request for information 6.  Answering a request for information 7.  Acknowledging that a previous gesture or utterance was received 8.  Protesting  Administration  The authors suggest that the free-play session with child and caregiver should be videotaped through a two-way mirror and monitored in a control room by an individual familiar with

videotaped through a two-way mirror and monitored in a control room by an individual familiar with the CII. Although this is a criterion-referenced measure, the authors indicated that the recording should be approximately 45 minutes in length if the clinician would like to do comparisons against the preliminary data they reported for the measure. Stimulus materials should include a variety of toys and books that allow the child to create a variety of activities. No other distracting material

and books that allow the child to create a variety of activities. No other distracting material should be in the assessment room, and only the child and caregiver should be present during the recording. A familiar caregiver is believed to support obtaining a representative sample of the child’s communicative functioning regardless of the familiarity of the testing environment. A written script is included to be read to the caregiver prior to beginning the recording. The purpose of the script is

included to be read to the caregiver prior to beginning the recording. The purpose of the script is to inform the caregiver of the reason for recording the session and to encourage them to follow the child’s lead while refraining from interacting minimally or asking too many questions.

Scoring  The authors of the CII suggest that the video be scored as soon as possible and ideally by the person who monitored the recording. A training procedure for all scorers is also outlined to minimize variability in scorer coding. Only intentionally communicative behaviors are to be coded. Therefore, all coded behaviors must occur in a shared or joint activity. Criteria for what constitutes a joint activity are also described. Each instance of an intentionally communicative behavior is

a joint activity are also described. Each instance of an intentionally communicative behavior is assigned to a single category and given a score of 1. Only those behaviors that fit into one of the CII’s eight intentional categories can be scored. Specifics on how to handle repetitions of gestures, vocalizations, and verbalizations are also addressed.

Psychometric Data  The communicative intention inventory (CII) was designed as a criterion-referenced measure of the intentional communication of a child and thus compares each child’s performance in comparison to a standard or objective, rather than a normative sample. The eight intentional categories included were selected based on their content and construct validity. The CII includes categories that are believed to adequately reflect instances of early intentional communication and the

that are believed to adequately reflect instances of early intentional communication and the range of communicative functions involved in it based on the existing literature in early intentional communication. The categories included are believed to be necessary for the acquisition of future conversational discourse skills.

The reported internal test reliability was 0.66, based on a sample of 16 monolingual, native English-speaking typically developing children between 15 and 16 months of age in Piaget’s sensorimotor stage V. The authors believe the score was affected by the homogeneity of the participants. Percentile ranks and standard deviation scores were also provided for frequency of demonstration of each of the eight intentional categories in the same sample group.

In terms of inter-scorer reliability, 10 graduate students in speech-language pathology programs (who underwent CII’s outlined scorer training procedure and independently scored a recording of 33 behavioral sequences) received a mean proportion of correct coding of behavioral sequences score of 91. All judges also coded all four behavioral sequences that did not demonstrate communicative intent as “unscorable.”

Content validity was established based on the creation of the inventory format and behavioral definitions founded on existing early communicative development research studies, language acquisition literature, and the authors’ observations of parent-child interactions. When this measure was initially published in 1981, specific studies were not undertaken to establish construct validity though the authors believed that indirect evidence (i.e., the existing literature on social development in

the authors believed that indirect evidence (i.e., the existing literature on social development in children with autism spectrum disorder, the literature on onset of intentionality in children with typical development, and hypotheses regarding children’s performance on the CII) supports the CII’s utility for assessing intentional communication behaviors. The authors published a study 2 years later noting no significant difference in the performance of children with Down syndrome and children

noting no significant difference in the performance of children with Down syndrome and children with typical development on the CII.

Clinical Uses  The communicative intention inventory (CII) allows the clinician to describe a child’s early communicative behaviors across eight intentional categories. Communicative intent is believed to form the basis of later social interaction, making the CII a potentially useful tool in determining intervention goals and predicting future social functioning based on a child’s performance on the measure. The CII was specifically designed to observe and code the intentional communication of

the measure. The CII was specifically designed to observe and code the intentional communication of children functioning between Piaget’s sensorimotor stages IV and VI. As research in language acquisition supports the idea that non-verbal expression of early communicative intentions precede and may support the development of future conversational skills, the authors suggest that the CII might also be useful with nonverbal children with and without cognitive delays both as an initial assessment

be useful with nonverbal children with and without cognitive delays both as an initial assessment tool and a measure of response to therapy.

These eight intentional behaviors (i.e., comment on action, comment on object, request for action, request for object, request for information, answering, acknowledging, and protesting) were selected based on their frequency of use among children in the sensorimotor stage, their likelihood to occur in a clinical setting, and the ability to develop an operational definition for them. Within each intentional category, descriptions of some expected behaviors are presented within subcategories

intentional category, descriptions of some expected behaviors are presented within subcategories (i.e., “gesture or gestural/vocal” and “verbal”) to indicate how the intention was coded. For example, for the Comment on Object category, “points to, looks toward, or approaches entity may vocalize” (gestural or gestural/vocal) and “extends arm to show entity in hand and produces a word” (verbal) are both included as specific behaviors that a child may exhibit. General descriptions of the criteria

both included as specific behaviors that a child may exhibit. General descriptions of the criteria for inclusion within the subcategories of “gesture or gestural/vocal” and “verbal,” and samples of parent-child interactions for classification practice are also provided.

The CII allows the clinician to determine which of the eight intentional categories are present and the manner (i.e., gestural, vocal, or verbal) in which they are expressed in order to determine if a child’s language difficulties are specifically associated with their ability to use language effectively. The authors suggest that further analysis may be done regarding other aspects of language, such as productivity, by applying information from existing language acquisition literature. The

such as productivity, by applying information from existing language acquisition literature. The authors remind the clinician that the percentile ranks and standard deviations reported for the 16 children with typically development are not intended to be used as referenced norms but are simply provided to describe the behavior patterns in that particular group and aid the clinician’s interpretations.

See Also ▶Communicative Functions ▶Communicative Intent ▶Intentional Communication ▶Piagetian Stages ▶Pragmatic Communication ▶Pragmatic Language Impairment ▶Pragmatics  Communication Intentions ▶Communicative Functions  Communication Interventions  Definition  Early identification and intervention are key factors when addressing communication skills. Upon completion of a comprehensive communication assessment, it is important to address any communication deficits identified. As each child with

assessment, it is important to address any communication deficits identified. As each child with autism presents with varying levels of skills and abilities, communication intervention should be based on individualized information obtained throughout the assessment process. Communication intervention should focus on improving skills associated with the form, function, and content of the communicative act, as well as increasing engagement and attention skills, nonverbal behaviors, and gestures.

act, as well as increasing engagement and attention skills, nonverbal behaviors, and gestures. Given that communication skills often fall on a continuum, there are a variety of different intervention approaches available, each of which originates from one of many philosophies. Such philosophies range from behavioral techniques that target the functional and social behaviors related to communication to augmentative and alternative communication aids, which utilize both high- and low-tech aids to

to augmentative and alternative communication aids, which utilize both high- and low-tech aids to supplement communication, to naturalistic approaches that seek to foster communication in the natural environment, including home, school, the job setting, and community-based activities. Children’s language and communication abilities are best facilitated through the relationships they establish with family members and their interventionists as well as a result of environmental changes and

with family members and their interventionists as well as a result of environmental changes and communication partner development (Prelock 2006). It is important that communication interventions address the core deficits that characterize children with autism spectrum disorders (ASD), including those that can facilitate communication in play and social interaction.

Notably, many communication intervention strategies are rooted in behavioral principles and strategies such as prompting, modeling, and reinforcement (Brown and Murray 2002). Most speech-language pathologists, however, employ social-pragmatic developmental approaches to address the primary social-pragmatic deficits that characterize children with ASD.

Because communication is such a critical skill for learning and connecting with others, children with ASD who have minimal verbal skills are often limited in their ability to participate in play and socialize with adults or peers (Prelock 2006). As a result, some children engage in less conventional ways to communicate their intent, often substituting undesirable behaviors to communicate their needs. Speech-language pathologists have a critical role in addressing the communication needs of

needs. Speech-language pathologists have a critical role in addressing the communication needs of children with ASD who exhibit limited verbal abilities. Some of the intervention approaches they might select include but are not limited to joint action routines, minimal speech approach, proximal communication, prelinguistic milieu teaching, augmentative communication, functional communication training, visual supports, parent training, More Than Words™, and the Picture Exchange Communication

visual supports, parent training, More Than Words™, and the Picture Exchange Communication System™.

As children with ASD begin to develop their oral communication and can communicate verbally, they are likely to require additional support to use their verbal communication skills in the most effective manner to learn and interact across a variety of contexts and with various communication partners. For children with ASD who are verbal, speech-language pathologists might employ interventions such as enhanced milieu teaching, time delay, pivotal response training, modeling, video modeling and

as enhanced milieu teaching, time delay, pivotal response training, modeling, video modeling and video self-modeling, scripting, Talkability™, Social Stories™, and comic strip conversations (Prelock 2006).

Importantly, communication interventions for children with ASD can to be used to help manage unconventional verbal behaviors as well as challenging behaviors since behavior is often a child’s attempt to communicate. Although not directly related to communication interventions, approximately 52 % of parents of children with ASD have used at least one complementary and alternative medical (CAM) therapy with their child with ASD to address behavioral and communication challenges (Wong and Smith

with their child with ASD to address behavioral and communication challenges (Wong and Smith 2006). Most of the interventions families select are biologically based (e.g., special diets or supplements), and at least 75 % felt the therapies were beneficial (Wong and Smith 2006). CAM interventions, however, have not been widely investigated as a strategy to support communication in children with ASD.

The selection of any communication intervention must consider the context, the available evidence, the child’s relative communication strengths and challenges, and the child’s communication goals (Prelock and McCauley 2012). Several intervention reviews guide clinicians and families in their pursuit of the most appropriate intervention approaches (for more information, see reports from the Agency for Healthcare Research and Quality 2014; National Autism Center 2009, 2015; Stansberry-Brusnahan

for Healthcare Research and Quality 2014; National Autism Center 2009, 2015; Stansberry-Brusnahan and Collet-Klinenberg 2010; Wong et al. 2014).

See Also ▶Consequence-Based Interventions ▶Developmental Intervention Model ▶Developmental-Pragmatic Approaches/Strategies ▶Early Intensive Behavioral Intervention (EIBI) ▶Early Intervention ▶Functional Ecological Approach ▶Hanen Approach ▶Home-Based Programs ▶Language Interventions ▶Natural Environment ▶Self-Management Interventions ▶Social Interventions ▶Speech Therapy ▶Structured Behavioral Interventions  Communicative Acquisition in ASD  Short Description or Definition  The development of

Communicative Acquisition in ASD  Short Description or Definition  The development of communicative skills begins in the earliest months of life. Communication can be conceived as any action that conveys information to establish a shared understanding with another individual. It is comprised of a complex set of skills, including language, as well as a number of nonverbal behaviors like gestures, facial expressions, and body posture. Communication – whether verbally or nonverbally expressed –

facial expressions, and body posture. Communication – whether verbally or nonverbally expressed – has long been understood to be an area of core impairment in ASD, and research has uncovered deficits in communication development within the first year of life for children who go on to develop ASD. These difficulties are usually persistent, continuing to affect both verbal and nonverbal aspects of communication throughout the lifespan.

Natural History, Prognostic Factors, and Outcomes  Prior to the development of language, typically developing infants make a number of communicative achievements starting only months after birth. They attend preferentially to their caregivers’ face (Bushnell 2001) and speech (DeCasper and Fifer 1980), and by 3 months of age, infants smile reciprocally (Emde et al. 1976). By the end of the first year, they produce early speech sounds and perhaps even single words, use gestures to direct others’

they produce early speech sounds and perhaps even single words, use gestures to direct others’ attention, and follow social cues conveyed in movements and gaze (Fenson et al. 1994).

In contrast, children who are later diagnosed with ASD show broad deficits in early communication. Within the first year of life, children with ASD show reduced social smiling and reciprocal engagement with partners (Zwaigenbaum et al. 2005). Unlike typically developing toddlers, young children with ASD do not preferentially attend to child-directed speech (Kuhl et al. 2005; Paul et al. 2007), instead preferring to listen to nonspeech analog signal. They show delays and deficits in the emergence

preferring to listen to nonspeech analog signal. They show delays and deficits in the emergence of early gestures, joint attention, and imitation (Mitchell et al. 2006; Shumway and Wetherby 2009; Wetherby et al. 2007). These skills are all critical developmental precursors to language, and deficits in these nonverbal abilities are associated with deficits in verbal competence (Luyster et al. 2008).

One of the earliest forms of vocal communication in infants is crying, and infants who go on to receive an early ASD diagnosis have cries that are qualitatively different than controls, showing more dysphonation and less modulation (Esposito and Venuti 2009). When the first speech sounds emerge for young children, they are in the form of canonical babbling. In infants and toddlers later identified with ASD, these sounds may have unusual vocal qualities (Schoen et al. 2011; Sheinkopf et al. 2000)

with ASD, these sounds may have unusual vocal qualities (Schoen et al. 2011; Sheinkopf et al. 2000) or have a restricted consonant range (Wetherby et al. 2004). By around 1 year of age, children with ASD are already falling behind their unaffected peers in receptive and expressive language development, showing delays in the attainment of first words (Landa and Garrett-Mayer 2006; Mitchell et al. 2006; Zwaigenbaum et al. 2005). Receptive language skills are particularly impaired starting in the

2006; Zwaigenbaum et al. 2005). Receptive language skills are particularly impaired starting in the first few years of life (Hudry et al. 2010; Weismer et al. 2010) and continuing into childhood.

The process of learning words is driven, at least in part, by social engagement and attention (Baldwin et al. 2011; Baldwin and Moses 2001; Tomasello and Barton 1994). Longitudinal studies have suggested that slowed development in language – especially receptive – for children with ASD is partly a product of their overall difficulty with social engagement (Bopp et al. 2009). Indeed, the aforementioned tendency of children with ASD to direct their attention more toward nonspeech sounds than to

tendency of children with ASD to direct their attention more toward nonspeech sounds than to child-directed speech is associated with lower expressive language development (Kuhl et al. 2005). Similarly, children with ASD who showed greater physiological responsiveness to child-directed speech at an initial evaluation exhibited better communication skills 1 year later (Watson et al. 2010), pointing to a critical link between social attention and communicative development.

The question of how children with ASD, who experience deficits in attending to social input, learn new words has been addressed in a variety of studies. Results generally suggest that children who are able to attend to the social cues of others are able to use those cues to learn new words (Franken et al. 2010; Luyster and Lord 2009; Parish-Morris et al. 2007); the children who experience more profound deficits in social attention may not be able to successfully extract these cues for the

profound deficits in social attention may not be able to successfully extract these cues for the purpose of language learning (Baron-Cohen et al. 1997; Preissler and Carey 2005). The importance of relatedness with social partners for language development has also been reported by studies finding an association between parental responsiveness to child interest and child language (McDuffie and Yoder 2010; Siller and Sigman 2008).

A number of other cognitive biases have been proposed as important mechanisms for learning language, including the “noun bias” (by which children map a novel word onto an unknown object rather than an action or feature) and the “shape bias” (which supports children in generalizing words based on similarity of shape). Young children with ASD seem to abide by the former, accurately mapping new words onto objects rather than some other aspect of the visual scene (Swensen et al. 2007). However,

onto objects rather than some other aspect of the visual scene (Swensen et al. 2007). However, they are less adept at following the shape bias, failing to extend terms to same-shaped objects (Tek et al. 2008).

Patterns of change over time in communication development have been a focus of recent research. In general, children with ASD show improvement in language and communication with age (Ballaban-Gil et al. 1996; Lord et al. 2004a; Paul et al. 2008). However, a minority of children may experience a period of loss early in life. This phenomenon – called “regression” – has been reported in several retrospective and early home video studies (Baird et al. 2008; Hansen et al. 2008; Lord et al. 2004b;

and early home video studies (Baird et al. 2008; Hansen et al. 2008; Lord et al. 2004b; Werner and Dawson 2005). The initial portrait of this developmental shift was a sudden-onset loss that primarily affected language skills and occurred around the second birthday. Conceptualizations have gradually broadened to reflect the wider range of social communication skills that seemed to be affected, including reciprocal engagement, social attention, and shared enjoyment (Baird et al. 2008; Luyster et

reciprocal engagement, social attention, and shared enjoyment (Baird et al. 2008; Luyster et al. 2005). Interestingly, prospective studies have also uncovered evidence for loss of skills, but the characterization of this shift is somewhat different from the retrospective and video review reports. Ozonoff and colleagues noted a gradual deterioration in social communication skills between 6 and 18 months of age (2010), and a similar pattern has been observed elsewhere (Bryson et al. 2007).

The understanding and use of language require the mastery of a complex set of sounds and rules, and individuals with ASD have been found to experience difficulties at nearly every level of language development. It is important to note that, although all individuals with ASD (by definition) experience some sort of impairment in language and communication, any specific area of difficulty is not universal to the conditions. Despite these difficulties, more than two-thirds of individuals with ASD

to the conditions. Despite these difficulties, more than two-thirds of individuals with ASD eventually acquire spoken language (Anderson et al. 2007; Turner et al. 2006) though it can range from single words to complex, fluent speech. Early emergence of language (particularly by age 3) is a positive predictor of a number of outcomes (Ben Itzchak and Zachor 2009; Charman et al. 2005). It is associated both concurrently and longitudinally with a variety of skills including joint attention (Adamson

both concurrently and longitudinally with a variety of skills including joint attention (Adamson et al. 2009; Dawson et al. 2004; Sigman and McGovern 2005), gesture use (Ingersoll and Lalonde 2010; Luyster et al. 2008; Smith et al. 2007), play (Mundy et al. 1987; Sigman and McGovern 2005), imitation (Carpenter et al. 2002; Charman et al. 2003; Stone et al. 1997), and cognitive skills (Luyster et al. 2008; Thurm et al. 2007). Furthermore, the strength of early verbal skills is positively

et al. 2008; Thurm et al. 2007). Furthermore, the strength of early verbal skills is positively associated with response to treatment in young children with ASD (Ben Itzchak and Zachor 2011).

Clinical Expression and Pathophysiology  When language is acquired, it is often atypical in a variety of ways. Indeed, some of the first written accounts of the disorder included observations of odd speech patterns (Kanner 1943, 1946). Individuals with ASD may use language without apparent meaning; for instance, they may repeat previously heard words or phrases (termed “echolalia”). This behavior can occur immediately after the child hears a word or phrase, or it may be delayed by several hours

can occur immediately after the child hears a word or phrase, or it may be delayed by several hours or days. The former – “immediate echolalia” – appears to be more common in individuals with limited language (McEvoy et al. 1988). More advanced language users may incorporate chunks of speech heard previously into their speech in a scripted fashion (Nadig et al. 2010). Examples of this could include a phrase spoken by the parent earlier in the day (e.g., “It’s snowing cats and dogs!”) or the

a phrase spoken by the parent earlier in the day (e.g., “It’s snowing cats and dogs!”) or the introductory sequence to the Powerpuff Girls television show. Other individuals may make up words that do not have any conventional meaning (termed “neologisms”) (Volden and Lord 1991). For instance, a child might call all cups “tamots” or referring to anything with stripes as “surry.” In individuals with more advanced language, speech can be idiosyncratic, characterized by overly formal use of words

more advanced language, speech can be idiosyncratic, characterized by overly formal use of words or unusual formation of sentences (Nadig et al. 2010; Paul et al. 2009). For instance, rather than simply saying, “I like reading books,” the individual might use more pedantic phrasing like, “I enjoy engaging in literary endeavors.” Idiosyncratic phrasing could include asking, “How many years are you?” instead of “How old are you?” or referring to rainbows as “color bows.”

There have been some deficits reported in vocabulary acquisition and use, although results are not consistent. On the one hand, vocabulary knowledge across general categories (e.g., modifiers, nouns, predicates) seems to be indistinguishable from typically developing controls (Charman et al. 2003; Luyster et al. 2007). However, usage of some specific vocabulary types – such as mental state terms (Tager-Flusberg 1992), social-emotional identifiers (Hobson and Lee 1989), or deictic terms (Hobson et

1992), social-emotional identifiers (Hobson and Lee 1989), or deictic terms (Hobson et al. 2010) – may be impaired in an individual with ASD. An example of this is pronoun reversal, such that the individual uses the term “you” instead of “I” or “me” or refers to himself or herself in the third person (Lee et al. 1994).

The degree to which semantic and lexical organization is disrupted remains unclear. Children with ASD do well on standardized vocabulary tests (Kjelgaard and Tager-Flusberg 2001) and generalize terms in a usual manner. Some studies have reported that individuals with ASD form conceptual categories in a similar fashion to their typically developing peers (Tager-Flusberg 1985), while others reported differences in the connectedness of conceptual and lexical knowledge (Dunn et al. 1996). One

differences in the connectedness of conceptual and lexical knowledge (Dunn et al. 1996). One possible explanation to this apparent discrepancy is the suggestion that impairment may be specific to certain kinds of conceptual categories (e.g., animate beings; Kelley et al. 2006).

In general, grammar and syntax seem to follow a typical path of development (Tager-Flusberg et al. 1990; Waterhouse and Fein 1982). However, there is some indication that the range of grammatical constructions spontaneously used by individuals with ASD may be limited. Other difficulties have been noted, including morpheme omission and failure to correctly mark tense (Bartolucci et al. 1980; Eigsti and Bennetto 2009; Roberts et al. 2004).

The area of language and communication that is most universally disturbed is pragmatics, or the social use of language. For example, individuals with ASD may use language in restricted ways. That is, whereas language is broadly used for a variety of purposes (making requests, as well as sharing information, conveying interest, or directing attention), individuals with ASD may employ language predominantly to express their own needs, wants, or interests and only minimally for purely social

predominantly to express their own needs, wants, or interests and only minimally for purely social purposes (Loveland et al. 1988; Wetherby et al. 2007). As a result, maintaining reciprocal conversations is often quite difficult for individuals on the autism spectrum, who experience impairments in turn-taking and using socially appropriate questions and statements (Capps et al. 1998; Loukusa et al. 2007; Paul et al. 2009) (Jones and Schwartz 2009). Difficulty maintaining back-and-forth dialogue

2007; Paul et al. 2009) (Jones and Schwartz 2009). Difficulty maintaining back-and-forth dialogue may also present as rigidity in language use, sometimes referred to as “verbal rituals.” This pattern of behavior is characterized by a need for a language to follow a certain predictable routine rather than flow naturally. This can consist of a compulsive sequence of utterances spoken by the child – an example might be the need to recite book titles in alphabetical order without interruption – or it

example might be the need to recite book titles in alphabetical order without interruption – or it could be the desire for an interchange to abide by a particular routine. For instance, the child might have a habit of saying, “Welcome boys and girls! The color of the day is. . .” and insist that the parent answer, “The color of the day is red!” to which the child responds, “And after red is. . .” and expects the parent to answer “After red is orange!” and so on through a series of colors. Any

and expects the parent to answer “After red is orange!” and so on through a series of colors. Any disruption of this specific pattern and phrasing is often distressing for the child, with the focus being on the need for language predictability rather than social usage.

The understanding and use of nonlinguistic communicative cues, such as prosody, gestures, facial expressions, and gaze, commonly present a challenge to individuals with ASD. Understanding and using language that hinges on these nonlinguistic cues (such as humor or irony) are often impaired (MacKay and Shaw 2004; Rundblad and Annaz 2010; Wang et al. 2006) as is the use of a range of nonverbal cues. For instance, the speech of individuals with ASD may sound robotic or monotone; in other cases,

For instance, the speech of individuals with ASD may sound robotic or monotone; in other cases, it may have exaggerated ups and downs (Paul et al. 2005; Peppé et al. 2011; Shriberg et al. 2001). Vocal atypicalities carry over from speech into laughter, which is restricted in range and variety relative to controls, suggesting that individuals with ASD may not modulate their laughter for different communicative purposes (Hudenko et al. 2009). Difficulties with expressive prosody are accompanied by

purposes (Hudenko et al. 2009). Difficulties with expressive prosody are accompanied by deficits in accurately interpreting the significance of others’ prosodic cues (Korpilahti et al. 2007; Rutherford et al. 2002).

Individuals with ASD show decreased use of gestures, facial expressions, and gaze in communicative situations whether with or without language use (Garcia-Pérez et al. 2007; Lord et al. 2000; Loveland et al. 1988). Similarly, whereas the perception of gestures facilitates language comprehension for typically developing individuals, individuals with ASD experience a detriment in speech comprehension when the speaker uses concurrent gestures (Silverman et al. 2010), indicating that verbal and

when the speaker uses concurrent gestures (Silverman et al. 2010), indicating that verbal and nonverbal cues may not be processed as complementary pieces of a unified communicative message.

These observable abnormalities of communication and language are accompanied by atypical structural characteristics of associated brain regions. Volumetric differences in areas underlying social and emotion processing are associated with social communication impairments on behavioral measures (Kim et al. 2011; Mosconi et al. 2009; Parks et al. 2009; Schumann et al. 2009). Similarly, structural differences have emerged in brain regions known to be associated with language processing (McAlonan

differences have emerged in brain regions known to be associated with language processing (McAlonan et al. 2005; Rojas et al. 2006), and some of these structural differences are associated with variability in language for children with ASD (De Fossé et al. 2004; Knaus et al. 2009).

Functional investigations have yielded very promising findings as well. Differences in activation have been noted in regions serving non-linguistic communicative cues, including the amygdala, left temporal lobe, and prefrontal cortex (Critchley et al. 2000; Hesling et al. 2010; Wang et al. 2007). In the case of typical development, language processing is lateralized, occurring predominantly in the left cerebral hemisphere. However, a number of studies have indicated that language processing in

left cerebral hemisphere. However, a number of studies have indicated that language processing in individuals with ASD does not follow this pattern. A lack of left hemisphere lateralization has been reported, with profiles of either bilateral or right hemisphere activation being observed instead (Flagg et al. 2005; Kleinhans et al. 2008; Minagawa-Kawai et al. 2009) starting from very early on in life (Redcay and Courchesne 2008). There seem to be behavioral correlates of these neural differences

(Redcay and Courchesne 2008). There seem to be behavioral correlates of these neural differences in that reduced asymmetry is associated with greater language impairment for individuals with ASD (De Fossé et al. 2004; Herbert et al. 2005).

The centrality of communication, whether verbal or nonverbal, to our understanding of ASD ensures that it will remain a primary focus of research and clinical endeavors in the years to come. Strides continue to be made in standardizing definitions and measures (Tager-Flusberg et al. 2010), an important step in unifying efforts and optimizing the applicability of research findings to applied settings.

See Also ▶Communication Assessment ▶Communication Disorder ▶Communicative Functions ▶Language ▶Language Acquisition ▶Language Disorder ▶Language Tests ▶Speech  Communicative Act ▶Protodeclarative ▶Protoimperative  Communicative Development Inventories  Keywords CDI-III · CDIs · Infant form · MacArthur-Bates Communicative Development Inventories (MCDIs) · Toddler form

Abbreviations CDI-WG CDI-Words and Gestures CDI-WS CDI-Words and Sentences  Description  The MacArthur-Bates Communicative Development Inventories (CDIs) are standardized, norm-referenced, parent-report measures of early language and communication. All reference here pertains to the 2nd edition English-language publication (Fenson et al. 2007), unless otherwise stated. A User’s Guide and Technical Manual (hereafter, Manual) accompanies three alternative test forms: CDI-Words and Gestures

Manual (hereafter, Manual) accompanies three alternative test forms: CDI-Words and Gestures (CDI-WG), CDI-Words and Sentences (CDI-WS), and CDI-III. The 2nd edition Manual (Fenson et al. 2007) updates and expands upon its predecessor (Fenson et al. 1992), providing details around:

Theoretical rationale for the CDIs History of development of the CDIs The various sections and items on each test form Administration and scoring of the forms and interpretation based on normative data
Clinical and research uses of the CDIs The Manual Appendix includes some photocopyable forms which (a) facilitate the summary of an individual’s CDI scores and (b) guide the types of background data which might be sought concurrently.

CDI-Words and Gestures. With a normative sample of 1,089 infants aged 8–18 months, the CDI-WG evaluates early comprehension and production of language and nonverbal communication. Several subsections are arranged within two major parts. Part 1 evaluates infants’ First Signs of Understanding, including whether they have begun to respond to language (e.g., recognizing own name) and whether they understand commonly used phrases (e.g., “give it to mommy”). Parents then report on infants’ Starting

commonly used phrases (e.g., “give it to mommy”). Parents then report on infants’ Starting to Talk (i.e., word/phrase imitation and early object labeling). The Vocabulary Checklist presents 396 words within 19 semantic categories (e.g., animal names, toys, etc.), and parents indicate those words their infant “understands” and “understands and says.” Raw expressive vocabulary (i.e., all “understands and says”) and receptive vocabulary (i.e., all “understands” or “understands and says”) can be

and says”) and receptive vocabulary (i.e., all “understands” or “understands and says”) can be totaled.

Part 2 evaluates 63 communicative and symbolic Actions and Gestures, presented within five categories. Early Gestures include First Communicative Gestures (e.g., pointing and showing) and Games and Routines, signaling emerging intentional communication and social engagement. Later Gestures include Actions with Objects, Imitating other Adult Actions, and Pretending to be a Parent, signaling the developing awareness of objects’ functional and representational uses.

CDI-Words and Sentences. With a normative sample of 1,461 toddlers aged 16–30 months, the CDI-WS evaluates later aspects of language production, including expressive vocabulary, grammar, and syntax. Several subsections are again arranged within two parts. Part 1 evaluates Words Children Use, presenting a Vocabulary Checklist of 680 words arranged within 22 categories. Parents indicate those words their toddler “understands and says,” providing an expressive (but not receptive) vocabulary

words their toddler “understands and says,” providing an expressive (but not receptive) vocabulary count. How Children Use Words considers reference to the past and future, etc. Part 2 evaluates Sentences and Grammar, including Word Endings (i.e., regular plurals, possessive forms, etc.), and Word Forms/Endings (i.e., irregular nouns/verbs, and over-regularizations). Within Word Combinations, parents indicate whether their toddler at all combines words, and if so, they transcribe the three

parents indicate whether their toddler at all combines words, and if so, they transcribe the three longest phrases/sentences recently produced. From these, the Mean length of Three Longest sentences (M3L; see Manual, pp. 22–23) is computed (akin to Mean Length of Utterance [MLU]). Finally, parents report on their toddler’s current level of Complexity, indicating which exemplar within each of 37 pairs of phrases best matches the toddler’s current speech (e.g., “that my truck” vs. “that’s my

37 pairs of phrases best matches the toddler’s current speech (e.g., “that my truck” vs. “that’s my truck”).

CDI-III. A new addition, the relatively short CDI-III, was designed as an upward extension of the CDI-WS, using a normative sample of 356 children aged 30–37 months. Expressive vocabulary is assessed with a 100-item Vocabulary Checklist (around half of items overlap with CDI-WS items). Sentence Complexity is assessed using 12 sentence pairs, and Language Use questions (not included in the CDI-WS) assess aspects of comprehension, semantics, and syntax. Pilot testing informed the retention of

assess aspects of comprehension, semantics, and syntax. Pilot testing informed the retention of some appropriate items from the CDI-WS and the inclusion of other new items, and the upper age limit of 37 months was adopted given the substantive ceiling scores observed beyond this age.

Spanish CDIs  While numerous other-language CDI adaptations are currently underway (see section “Other Language Adaptations”), two Spanish version CDIs have progressed to the level of Manual publica- tion. The Spanish (Mexican) version comprises a full-test pack, including a Users’ Guide and Technical Manual (Jackson-Maldonado et al. 2003), and accompanying CDI-WG and CDI-WS forms. A Spanish (European) version (Lopez Ornat et al. 2005) has been adapted from the former.

Additional Developments  CDI Short Forms  Brief CDI-WG and CDI-WS forms (Fenson et al. 2000) are mentioned within the 2nd edition Manual (Fenson et al. 2007, pp. 13–14), but not published alongside it. These are purchased directly from the authors (refer to See Also) and present a subset of the appropriate Vocabulary Checklist items. Level 1 maps on to the CDI-WG for 8–18-month-olds, and two (alternate version) level 2 Short Forms map on to the CDI-WS for 16–30-month-olds. Each form also

(alternate version) level 2 Short Forms map on to the CDI-WS for 16–30-month-olds. Each form also enquires about whether the child yet combines words. Completion time is around 10 min, permitting rapid assessment of vocabulary acquisition, and interview administration format can be used if needed (e.g., in cases of low parent literacy), although normative data were collected using the standard checklist format.

Other Language Adaptations  A CDI Advisory Board promotes (and authorizes) adaptation of the CDIs for other non-English languages, some accompanied by normative data and all available for public use. Section “See Also” contains more information, as does the Advisory Board website: http://www.sci.sdsu.edu/cdi/

Historical Background  Interest in language development has a long history, and the current CDIs have evolved over 30 years (Fenson et al. 2007). Parent reports have regularly informed child language and communicative assessment, with diary studies common early on. Into the 1970s and 1980s, research programs led by Elizabeth Bates and Leslie Rescorla endeavored to develop more user-friendly questionnaire formats for parent report. Precursors to the current CDIs were four earlier

questionnaire formats for parent report. Precursors to the current CDIs were four earlier questionnaires; the Communicative Development Questionnaire (8–12 months), Language and Gesture Inventory (12–18 months), Early Language Inventory (18–24 months), and Grammatical Development Questionnaire (24–36 months).

The 1st edition CDI Manual, CDI-WG, and CDI-WS forms were published in 1992 (Fenson et al. 1992), with Italian versions also developed and published around this same time (Caselli and Casadio 1995). A research monograph on early communication development also appeared in 1994, presenting detailed analysis of data from the English-language normative sample. This included developmental trajectories of the various CDI skills, and evaluation of the correspondence across skills domains, and

of the various CDI skills, and evaluation of the correspondence across skills domains, and consideration of the impact of factors such as gender, birth order, and social class on language development (Fenson et al. 1994).

The CDI Manual is currently in its 2nd edition (Fenson et al. 2007). While the inventory forms have seen no substantive alteration, updates to the Manual include an improved normative data set, brief presentation of the Short Forms, and introduction of the CDI-III. Instructions for administering, scoring, and interpreting the CDIs were also expanded upon, and more details were included on the instrument psychometric properties and on research and clinical application. As undertaken with the

instrument psychometric properties and on research and clinical application. As undertaken with the original normative sample (Fenson et al. 1992, 1994), the updated Manual also includes analysis of developmental trajectories and cross-domain correspondence, along with some evaluation of the impact of other factors on language acquisition/development (Fenson et al. 2007; see section “Psychometric Data”).

Psychometric Data  Normative Samples  Normative data for the CDIs have been collected in two phases. During initial instrument development, 659 CDI-WG forms and 1,130 CDI-WS forms were completed (Fenson et al. 1992). In preparing the 2nd edition Manual (Fenson et al. 2007), an additional 430 CDI-WG and 331 CDI-WS forms were collected. The authors sought to increase the CDI-WG normative range up to 18 months, rather than just 16 months (as in the 1st edition). Increased sample diversity was

up to 18 months, rather than just 16 months (as in the 1st edition). Increased sample diversity was also sought, to better align with US census records around ethnicity and parent educational level. Ethnic distribution of the 2nd edition normative sample does better match US census records, albeit with fewer Hispanic respondents than expected, likely due to the inclusion criterion of English as the primary home language, for this sample. Parental education levels remain above the US average,

the primary home language, for this sample. Parental education levels remain above the US average, although good variability is included within the 2nd edition normative sample: around 30% of respondents held a high-school diploma or lower level of completed education (Fenson et al. 2007). Geographical sampling (across US states) was also improved for the 2nd edition.

Reliability  The Manual reports reliability in terms of internal consistency (IC) and test-retest reliability (TRT) across the broad skills domains assessed within the CDI-WG and CDI-WS forms (Fenson et al. 2007, pp. 99–102). These various Vocabulary Checklist components (CDI-WG comprehension and production and CDI-WS production) all evidence very strong IC, as do the CDI-WS sentence Complexity items. IC is lower, however, for CDI-WG Gestures items: while the Actions with Objects and Imitating

IC is lower, however, for CDI-WG Gestures items: while the Actions with Objects and Imitating Other Adult Actions correlate quite highly together, those among the other three sections are lower. TRT reliability is assessed across a maximum inter-assessment interval of 2 months, within a subgroup of the normative sample. CDI-WS expressive vocabulary counts for 216 toddlers were very stable. CDI-WG receptive vocabulary counts and gesture scores were similarly stable for 137 infants, with the

receptive vocabulary counts and gesture scores were similarly stable for 137 infants, with the single exception of those aged 12 months at initial assessment (see Fenson et al. 2007, p. 101 for discussion). CDI-WG expressive counts were also quite stable, except for infants aged 8–10 months at initial assessment (and likely due to floor effects at these young ages; Fenson et al.). The authors acknowledge difficulties inherent in assessing the reliability of a parent-report instrument, including

difficulties inherent in assessing the reliability of a parent-report instrument, including the possibility for halo effects and recall bias to impact upon IC and TRT reliability estimates. Ideally, evaluation of inter-rater reliability (IRR) would also be included, but this requires availability of a second respondent, equally familiar with the child’s abilities (frequently improbable). The authors argue, however, that strong evidence of validity (see below) presupposes robust reliability,

argue, however, that strong evidence of validity (see below) presupposes robust reliability, further strengthening the case for reliability of the inventories (Fenson et al. 2007).

Validity  The Manual reports on face, content, convergent, concurrent, and predictive forms of validity across the broad skills domains assessed within the CDI-WG and CDI-WS (Fenson et al. 2007, pp. 102–114). Face validity is supported by the professional appearance of the checklist forms, along with the breadth and depth with which language and communication skills are addressed in the assessment. The authors feel that parents will consider the CDIs as valid and comprehensive assessments of

The authors feel that parents will consider the CDIs as valid and comprehensive assessments of their children’s abilities and thereby provide considered responses. Content validity is evidenced in the authors’ use of the language development literature to ensure inclusion of those aspects of early language and communication development most important at the ages assessed. While phonology and communicative pragmatics fail to be represented in the CDIs, the authors maintain that those aspects

pragmatics fail to be represented in the CDIs, the authors maintain that those aspects included are given comprehensive coverage (Fenson et al. 2007).

Convergent validity is evidenced from the observation of correlations between CDI scores and language/communication data obtained through other methods (see Fenson et al. 2007, Chap. 4, and Fenson et al. 1994, for details). In brief, developmental trajectories across various broad communication and language domains evaluated in the CDIs are shown to increase consistently and regularly across ages assessed. Each skill domain assessed demonstrates an onset around the age at which it would be

ages assessed. Each skill domain assessed demonstrates an onset around the age at which it would be expected (given the broader literature), and rates of development correspond similarly to expectations from past research. Individual variability similarly corresponds to that which would be expected. Fenson et al. (2007) note some clear exceptions, however, including the parents of some 8-month-olds reporting greater receptive vocabularies, and other parents reporting much earlier onset of some

reporting greater receptive vocabularies, and other parents reporting much earlier onset of some pretense skills, than would be expected (see Manual, p. 103). On the whole, however, evidence for convergent validity is substantial. Fenson et al. (2007) argue that parents and researchers appear to be observing and reporting upon the same development phenomena irrespective of the research method employed (i.e., CDI report vs. laboratory experiment).

Evidence for concurrent validity emerges through the comparison of results from one test (i.e., parts of a CDI form) with those arising from other similar assessments (e.g., formal language tests, naturalistic language samples, etc.). A measure’s evaluated concurrent validity is influenced not only by its own indices of reliability and construct validity but also by those of the comparison measure. Furthermore, strong concurrent validity will only be evidenced when the target and comparison

Furthermore, strong concurrent validity will only be evidenced when the target and comparison measures assess an equivalent skill, a potential problem for the CDIs. Parent reports of child language draw on a wealth of knowledge about the child and daily exposure to his/her communication and are sought for the very reason that they are unlikely to correspond perfectly language skills assessed using other means (e.g., during a formal one-off test with an unfamiliar adult, or during a relatively

other means (e.g., during a formal one-off test with an unfamiliar adult, or during a relatively brief naturalistic language sample, Fenson et al. 2007). Notwithstanding, Vocabulary Checklist counts show moderate-to-strong correspondence with other vocabulary and language measures (see a tabulation of various study results in Fenson et al. 2007, pp. 106–107). More limited, however, is the evidence around Gestures, given the dearth of other accepted measures of gesture to which CDI scores can be

around Gestures, given the dearth of other accepted measures of gesture to which CDI scores can be compared. These do, however, associate closely with formally assessed aspects of language (i.e., comprehension; see Manual p. 109). CDI-WS Complexity has been compared to spontaneous speech transcriptions, with CDI M3L and other complexity scores associated strongly with MLU during unstructured play (Fenson et al.).

Predictive validity is considered in the 2nd edition Manual (Fenson et al. 2007), based on a subset of the normative sample which completed a second inventory form 6 months after initial assessment. For many, this entailed a repeat assessment with the same form (i.e., 62 parents completed CDI-WG and 228 completed CDI-WS twice). For 217 cases, the interval necessitated initial use of the CDI-WG but follow-up using the CDI-WS. Predictive validity of expressive vocabulary counts was high for all

follow-up using the CDI-WS. Predictive validity of expressive vocabulary counts was high for all infants and toddlers aged above 11–12 months at the first assessment, with best predictive power observed at an initial 20-month assessment. Only limited validity was shown for expressive skills in infants younger than 11–12 months and for receptive skills (only assessable at two time points for infants initially aged up to 12 months). This pattern of findings is argued to reflect a true lack of

infants initially aged up to 12 months). This pattern of findings is argued to reflect a true lack of stability in the language skills of very young infants (a proposal supported by evidence from other areas of the developmental literature; see Fenson et al. 2007), rather than a flaw of the CDI-WG. CDI-WS grammatical complexity showed good predictive validity, particularly in children aged 20 months and older at initial assessment.

CDI-III  CDI-III normative data yield from 356 children aged 30–37 months. Given the relative recency of this form, only very limited psychometric data are available, summarized in the Manual (Fenson et al. 2007, pp. 154–160). Educational levels of respondents diverge significantly from US census data, limiting the confidence with which scores for children from low socioeconomic backgrounds can be validly interpreted.

CDI Short Forms  The 2nd edition Manual (Fenson et al. 2007) refers only briefly to the CDI-WG and CDI-WS Short Forms, available for purchase directly from the authors (for details, “See Also”). Preliminary normative data exist in a research publication (Fenson et al. 2000), with short-form and full-form vocabulary counts highly intercorrelated. The two (alternate version) level 2 Short Forms demonstrate important ceiling effects for toddlers older than 27–28 months, due to the abbreviated

demonstrate important ceiling effects for toddlers older than 27–28 months, due to the abbreviated vocabulary list length containing only 100 words (vs. 680 words in the full CDI-WS).

Clinical Uses  Administration and Scoring  Administration of a full-version CDI form requires 20–40 min and should be self-explanatory to parents. While normative data collection was through postal return of forms, the Manual provides suggestions for clarifications to parents and procedures for checking report accuracy (Fenson et al. 2007, pp. 15–18). Both the CDI-WG and CDI-WS forms have norms for 16–18-month-olds, and form selection will therefore depend on the purpose of current and possible

16–18-month-olds, and form selection will therefore depend on the purpose of current and possible future assessments (see pp. 12–13). Options for scoring and obtaining normative CDI data (by hand or using automated methods) are discussed in detail (pp. 18–34). The authors address issues around data interpretation for three subgroups (pp. 34–38):

Children from low SES backgrounds (including where parental education is low) Children who are learning more than one language Children who are older than the normative group, but for whom language skills are within the assessable range of the CDIs

Parent-Report Pros and Cons  Parent reports are based on the everyday observation of child language and arguably produce more ecologically valid results than otherwise obtainable (e.g., through formal/direct assessment, naturalistic language sampling, etc.). CDIs benefit from the wealth of parent knowledge and are unlikely to be negatively influenced by aspects of the child’s personality (e.g., shyness) or mood on a given day (e.g., fussiness). Clinically, parent report is also time efficient and

or mood on a given day (e.g., fussiness). Clinically, parent report is also time efficient and cost effective; CDIs can be completed prior to attendance at more costly clinic appointments (i.e., permitting better use of the consultation time) and can be completed at multiple time points (i.e., to facilitate developmental monitor- ing; Fenson et al. 2007).

Other biases may be inherent, however. Parents may consistently over- or underreport their child’s abilities, and the experience of completing an inventory might influence later reports provided using the measure (i.e., through alteration of the parents’ behavior with, or sub- sequent observation of, their child). However, such a possibility has been evaluated for the CDI, with minimal such influence observed (although such contention is more justified for parent reports on other aspects of child

observed (although such contention is more justified for parent reports on other aspects of child developmental skill; Fenson et al. 2007). Furthermore, the CDI format aims specifically to reduce poten- tial respondent bias, addressing current and emerging skills (rather than past abilities) and using a recognition (rather than recall) format to minimize the effects of memory and item interpretation.

Clinical Uses for the Parent-Report CDIs  Screening for language delay. Firm diagnosis of specific language impairment (SLI) is possible only from around 3 years. However, CDIs permit assessment of conventional early markers for such language disorder (Fenson et al. 2007). Both “delay 3” (Rescorla 1989) and “delay 3+” (Klee et al. 2000) criteria for identifying late talkers can be gauged with the CDIs and associated Basic Information Form (Manual Appendix). Not all late talkers will develop

the CDIs and associated Basic Information Form (Manual Appendix). Not all late talkers will develop enduring language problems. However, early identification of atypical developmental patterns may indicate further assessment and ongoing monitoring. Rates of communication growth (able to be evaluated through repeated CDI completion) better predict later language ability than do the results of any single assessment (Thal 2000). Delays in concurrent language comprehension and production accompanied

assessment (Thal 2000). Delays in concurrent language comprehension and production accompanied by a failure to compensate with gestures signify particularly high risk (Thal and Katich 1996), with each component addressed within CDI-WG assessments.

Characterizing special groups. While the CDI normative sample extends only to 30 months (37 months for CDI-III), they can be used to evaluate the skills of older children whose language falls within the range of assessed domains (i.e., developing vocabulary, emerging grammar, etc.). As such, they are increasingly used clinically/for research with individuals with autism spectrum disorders, Down syndrome, Williams syndrome, and cleft lip/palate, among other groups (e.g., Charman et al. 2003;

syndrome, Williams syndrome, and cleft lip/palate, among other groups (e.g., Charman et al. 2003; Mervis and Robinson 2000; Snyder and Scherer 2004). Normative scores are only interpretable where older individuals’ raw scores fall at or below the 30-month median level (Fenson et al. 2007). Raw scores are therefore typically of greatest interest (e.g., documenting how many raw words an individual understands/says).

Intervention design and evaluation. CDI results can identify specific intervention targets, such as the promotion of vocabulary growth, specific lack of comprehension skills, development of correct grammar, etc. Furthermore, the inventories can be used to evaluate/demonstrate post-intervention change. The Manual notes some such intervention studies including samples of toddlers with expressive language delays, with cleft lip/palate, and following cochlear implant (Fenson et al. 2007, p. 44).

See Also ▶Communication and Symbolic Behavior Scale ▶Communication Assessment ▶Expressive Language ▶Gestures ▶Grammar ▶Language ▶Language Acquisition ▶Language Disorder ▶Language Tests ▶Play ▶Pretend Play ▶Preverbal Communication ▶Receptive Language ▶Receptive Vocabulary ▶Symbolic Play ▶Vocabulary identifying two bipolar dimensions: “destructive-nondestructive” behaviors and “overt-covert” behaviors. They concluded that most conduct problems could be classified within these two orthogonal

behaviors. They concluded that most conduct problems could be classified within these two orthogonal dimensions. The overt-nondestructive cluster reflected the criteria for ODD, whereas the other three clusters, with features more indicative of property and status violations, represented CD symptoms. For diagnosis of CD, the individual must have presented in the past 12 months “a repetitive and persistent pattern of behavior in which the basic rights of others or major age-appropriate societal

pattern of behavior in which the basic rights of others or major age-appropriate societal norms or rules are violated” (APA 2013). Behaviors that must be present fall into the following four categories of aggressive behavior:

1. Aggressive acts toward people or animals 2. Destruction of property 3. Deceit or theft 4. Violation of rules At least one of the above criteria must have been presented during the last 6 months. Moreover, the disturbance in behavior must cause clinically significant impairment in social, academic, or occupational functioning. The age of onset determines the type of CD, and the severity depends on the damage caused to others. The behaviors that characterize a mild severity include lying,

on the damage caused to others. The behaviors that characterize a mild severity include lying, truancy, and running away at night without permission. Moderate severity may include acts of vandalism and theft without confrontation. Severe cases include forced sex, physical cruelty, and use of a weapon and breaking and entering.

Recent studies indicate that a significant proportion of children with ASD may also be characterized with ODD symptoms. For example, two recent studies found that the percentage of children with ASD who meet DSM-IV criteria for ODD is 13% in the age group of 3–5 years and 27% in the age group of 6–12 years according to parental ratings, and when rates from teachers were considered, the numbers were 21% and 25%, respectively (Gadow et al. 2004, 2005). Problem behaviors that are most often

were 21% and 25%, respectively (Gadow et al. 2004, 2005). Problem behaviors that are most often identified in individuals with ASD are physical aggression, self-injury, destruction of property, arguing nature, temper tantrums, and disruption. But other behaviors, such as explosive behavior, running away, stubbornness, violation of rules, defiant, threatening, or not to accept being guilty, have also been identified as moderate or severe conduct problems in people with ASD (Lecavalier 2006).

also been identified as moderate or severe conduct problems in people with ASD (Lecavalier 2006). Individuals with ASD present more problem behaviors than typically developing children, and overall levels of problem behavior are positively correlated with severity of ASD (Matson et al. 2009). About one third of individuals with intellectual disability (ID) who exhibit problem behavior have comorbid diagnosis of ASD (Myrbakk and von Tetzchner 2008), and the more severe the ID, the greater the

diagnosis of ASD (Myrbakk and von Tetzchner 2008), and the more severe the ID, the greater the risk of problem behavior (Holden and Gitlesen 2006). A common way of categorizing problem behaviors in people with ASD is based on the function of these behaviors in their natural context, but there are no systematic reviews about the possible functions that may play a role. In addition, a behavior problem may have more than one function. The most common functions that can be found in the literature

may have more than one function. The most common functions that can be found in the literature are attention-seeking, avoiding, tangible benefit, or being alone (i.e., nonsocial, self-stimulatory, or automatic rein-forcement). Avoiding pain or discomfort has also been described as a possible function of problem behavior.

### Epidemiology  Rates of prevalence estimates of CD vary widely depending on the methodology used in each study and on the ascertainment procedures. The disorder is considered to be a common mental health problem in children and adolescents and appears to have increased in the recent years. CD may be higher in urban than in rural areas and appears more often in boys than girls. Prevalence rates for the disorder in childhood and adolescence range from 2% to 10% in nonreferred samples (APA

for the disorder in childhood and adolescence range from 2% to 10% in nonreferred samples (APA 2013). Prevalence rates increase from infancy to adolescence and are higher in males than in females. Recent studies show prevalence rates of 9.5% (12% for males and 7.1% for females) (Nock et al. 2006). It seems that male-female ratios might be stronger in childhood than in adolescent-onset groups.

Although individuals with ASD often exhibit behavior problems that could have a negative impact in everyday activities, and several studies suggest a high prevalence of aggressive behavior in people with ASD, few studies have examined the prevalence of maladaptive behaviors that warrant a clinical diagnosis of CD in individuals with ASD. Prevalence of problem behaviors within the ASD population is relatively high. Most studies indicate that at least half of the people with ASD exhibit behavior

relatively high. Most studies indicate that at least half of the people with ASD exhibit behavior problems, with an estimated prevalence ranging between 35.8% and 94.3% (Kozlowski and Matson 2012). Lecavalier (2006) presented a study on prevalence of problem behaviors of children and adolescents with ASD. In a sample of 303 children and adolescents with ASD, he found that the proportion of children and adolescents who, according to parents and teachers, showed “conduct problems” was 13.9%

and adolescents who, according to parents and teachers, showed “conduct problems” was 13.9% (parents) and 8.4% (teachers). Behavior problems rated by parents and teachers as more frequent were stubbornness, temper tantrums, defiant behavior, arguing nature, not to accept being guilty, and explosive behavior. Stubborn behavior was rated as a moderate or severe problem for 50.7% (parents) and 44.4% (teachers). Also, temper tantrums, defiant behav-ior, not to accept being guilty, and explosive

(teachers). Also, temper tantrums, defiant behav-ior, not to accept being guilty, and explosive behavior were classified with a high frequency. Finally, aggressive acts, such as attacking others, were observed by teachers in 14.3% and in 9.9% by parents. Both informants (parents and teachers) indicate physical fights as moderate-to-serious problem for 5.3% of the sample. Property destruction was a moderate or severe problem for 11–12% (according to information from parents and teachers,

was a moderate or severe problem for 11–12% (according to information from parents and teachers, respectively), and threatening people was rated as a moderate-to-severe problem for 4.5% (parents) and 7.6% (teachers) of the sample. The study also found that lower adaptive skills were associated with greater problem behaviors among the sample. Regarding high-functioning individuals with ASD, research and clinical observations suggest that a relatively large number of these individuals have

research and clinical observations suggest that a relatively large number of these individuals have behavioral problems at some point in their development. These symptoms may indicate the presence of ODD comorbid with ASD. They may also have symptoms of CD that are more severe in school-age time than in preschool (Gadow et al. 2005).

### Natural History, Prognostic Factors, and Outcomes  The onset of CD can occur very early, even at preschool age, although the most obvious symp-toms usually occur between middle childhood and middle adolescence. Onset is rare after age 16. ODD is a common precursor to the childhood-onset type. Other different factors affect the onset of symptoms of CD. The scientific literature high-lights three main factors:

1. Personal characteristics such as a difficult tem-perament in early childhood, a callous-unemotional personality style (lack of empa-thy, remorselessness, and shallow affected), propensity for risk-taking, low to threatening and emotional reactions stimuli, reduced sen-sitivitity to cues of punishment, and low levels of conscience and moral development
2. Bad parenting practices such as harsh, puni-tive, abusive, and/or inconsistent discipline

2. Bad parenting practices such as harsh, puni-tive, abusive, and/or inconsistent discipline
3. Repeated peer rejection and socializing with a deviant peer group (Hughes et al. 2008.

In addition, there is evidence suggesting that childhood-onset CD could be more related to per-sonal and familial factors, whereas adolescent-onset could be more related to exposure to deviant peers and environmental disadvantages associated with ethnic minority status (McCabe et al. 2001). Finally, CD in childhood is associated with other problems, including the likelihood of repeating a grade in school, being suspended or expelled from school, an earlier age of onset of alcohol depen-dence,

in school, being suspended or expelled from school, an earlier age of onset of alcohol depen-dence, and having to attend a greater number of treatments for drug abuse (Hughes et al. 2008). There is not a single risk factor that determines the onset of the CD. Experts emphasize that the mul-tiple risk factors mentioned above interact to facil-itate and perpetuate the disorder.

Problem behaviors play a critical role in ASD. However, the heterogeneity of symptoms present in persons with ASD (differences in cognitive functioning, or in adaptive behavior, the nature and severity of autistic behaviors) and changes in the development difficult to understand how these individual differences affect the occurrence and presentation of behavior problems beyond the core symptoms that define the ASD population. Despite the differences, consequences of prob-lem behaviors are

that define the ASD population. Despite the differences, consequences of prob-lem behaviors are similar in most cases. These behaviors prevent the development of social rela-tionships (Matson et al. 2010; Myrbakk and von Tetzchner 2008), place the individual and their family members in very difficult situations, and interfere with effective education (Carr et al. 1991). Also, it has been shown that the fact of problem behaviors (specially aggressiveness) causing more distress to caregivers than

the fact of problem behaviors (specially aggressiveness) causing more distress to caregivers than the core autistic symptoms (Lecavalier et al. 2006) is one of the most important impediments to placement in less-restrictive environments (Shoham-Vardi et al. 1996), can also interfere with intervention efforts, and, if present during early childhood, is of particular concern given that these are critical years for intervention. Thereby problem behav-iors impact the long-term prognosis. Research

years for intervention. Thereby problem behav-iors impact the long-term prognosis. Research on risk factors has provided some important data. Tonge and Einfeld (2003) studied a group of 118 children with autism in a period of 8 years. Results indicated that 73.5% of children with autism had behavioral alterations in a clini-cally significant range, with scores fairly stable over time. These researchers reported that chil-dren and adolescents with ASD are at high risk of severe and persistent

reported that chil-dren and adolescents with ASD are at high risk of severe and persistent behavioral disturbances beyond those that define the disorder. Matson et al. (2009) have studied the potential causal factors of problem behaviors in children with ASD, showing that overall levels of problem behavior were positively correlated with severity of ASD (Matson et al. 2009). Lecavalier (2006) in his epidemiological study found that lower adaptive skills were associated with greater behavioral

his epidemiological study found that lower adaptive skills were associated with greater behavioral problems, but age and gender do not seem to influence behavior problems. In a recent study, Hartley et al. (2008) examined a large sample of children with ASD, classifying 27% of sample in the clinically significant range on the CBCL Externalizing Problems’ subscale, and 22% fell within the clinically significant range on the aggression subscale. Results indicated that exter-nalizing problems were

significant range on the aggression subscale. Results indicated that exter-nalizing problems were significantly correlated with poorer adaptive skills, lower nonverbal cog-nitive functioning, and poorer expressive lan-guage. Also Dominick et al. (2007) found that individuals with ASD with low cognitive func-tioning and adaptive behavior and with low-expressive language skills exhibit more problem behavior than high-functioning individuals (Dominick et al. 2007).

### Clinical Expression and Pathophysiology  CD may manifest itself in various symptoms that are classified into four categories: aggression toward people or animals, destruction of property without aggression, deception or theft, and serious violation of the social rules. These symptoms are behaviors that usually occur in early childhood. Many children commit acts of aggression, break property of others, commit petty thefts, say some lies, and violate some social rules. But in the case of

of others, commit petty thefts, say some lies, and violate some social rules. But in the case of children who have a CD, all these behaviors are very frequent and persistent, and some appear in an age too early such as running away from home at night (with no objective reasons to escape such as being abused) or truancy before age 13. The clinical expression of problem behaviors in ASD will depend on the subject’ age and on whether it is associated with ID individuals with greatest deficits

on the subject’ age and on whether it is associated with ID individuals with greatest deficits engaging in more severe problem behaviors. Severity of ASD symptomatology affects the severity of problem behaviors. Also, symptoms of other disorders such as attention-deficit hyperactivity disorder or obsessive com-pulsive disorder will affect the clinical expression of conduct problems in people with ASD. But it remains unknown whether the comorbidity of ASD with these disorders leads to different

ASD. But it remains unknown whether the comorbidity of ASD with these disorders leads to different clini-cal expressions of behavior problems. This is important to better understand the pathophysiol-ogy of CD (and also of ASD). The neurobiologi-cal disorder of ASD results in difficulties in social cognition with its own characteristics, such as the difficulty to infer mental states and recognize (e.g., intentions, beliefs, desires, etc.) in self and others, which can interact with environmental

intentions, beliefs, desires, etc.) in self and others, which can interact with environmental fac-tors leading to atypical behavioral patterns and behavior problems. Some CD symptoms (such as physical aggres-sion, lying, and stealing) are relatively common in early childhood, and to distinguish them from normal childhood behavior, the clinician must take into account the frequency and persistence of problem behavior beyond the age of four. In childhood, most of the manifestations are limited to

of problem behavior beyond the age of four. In childhood, most of the manifestations are limited to family and school contexts, but they affect the overall functioning of the child. In adolescence, behavior problems tend to have more serious con-sequences encompassing the whole adolescent’s social setting and including behavior problems that are much more serious.

### Evaluation and Differential Diagnosis  CD is a complex problem affecting multiple domains of functioning and often showing a high rate of comorbidity with other disorders. Assessment requires a comprehensive approach encompassing the child, family, school, peers, and community factors. Well-trained profes-sionals should conduct assessments, to ensure the proper treatment. Otherwise, the behavior problems will continue or even worsen. Language disorders and intellectual disability usually

problems will continue or even worsen. Language disorders and intellectual disability usually found in ASD complicate the assessment and diagnosis. Even mild deficiencies in language can make challenging the study and identification of subtle differences in emotions, health status (presence of pain or physical discomfort), or feel-ings of annoyance at being unable to control own decisions. Assessment requires combining qualitative and quantitative methods to obtain information, and collecting

requires combining qualitative and quantitative methods to obtain information, and collecting data from several sources such as parents, teachers, and peers is mandatory. Infor-mation from different sources should be compared to detect and prevent possible biases caused by the partial view of each reporter and for a better understanding of the disorder being evaluated. Behavior rating scales can be completed by parents, teachers, and children to obtain compara-ble information. Clinicians and

be completed by parents, teachers, and children to obtain compara-ble information. Clinicians and researchers con-sider behavior rating scales a time-efficient method of collecting reliable information and pro-viding an assessment of several domains of behavior, usually both on the healthy functioning and the maladaptive. Behavioral observation is a useful tool that is normally used in assessing problem behaviors, both to describe the function (i.e., functional assess-ment) of problem behavior

problem behaviors, both to describe the function (i.e., functional assess-ment) of problem behavior and to monitor treat-ment progress. Functional assessment is the process of identifying the variables that predict and maintain problem behavior. The literature review on the treatment of problem behaviors sug-gests that interventions based on functional assess-ment are more likely to produce the reduction of problem behavior (Horner et al. 2002). The process of conducting a functional assessment

of problem behavior (Horner et al. 2002). The process of conducting a functional assessment typically involves the following: (1) identifying the problem behavior, (2) building hypotheses about the events that occasion and maintain problem behavior, (3) testing/confirming the functional hypothesis, and (4) designing an intervention based on the confirmed information (Horner et al. 2002).

### Treatment  A variety of treatment procedures have been devel-oped for children and adolescents with CD, but only some have been shown to reduce CD behaviors. Intervention procedures seem to be more effective in children under 8 years, when behavior problems have recently begun and when it includes a multimodal and multicomponent strategy, specifically adapted to the individual needs (Hughes et al. 2008). The evidence-based recommendations empha-size the need for a multicomponent

(Hughes et al. 2008). The evidence-based recommendations empha-size the need for a multicomponent intervention aimed at prevention and early intervention. The treatment mainly consists of psychological, edu-cational, and social interventions focusing on chil-dren, parents, and teachers. Psychotropic medication and applied behavior analysis are the most frequently used treatments. Child-directed interventions aim to improve skills to manage anger and control of aggressive impulses, and improve

interventions aim to improve skills to manage anger and control of aggressive impulses, and improve empathy with others, strengthening relationships with peers. With the family it is necessary first to ensure commitment and motivation and then to begin training within the family context and subsequently generalized to other places of the community (INSERM 2005). Pharmacological treatment is appropriate when used in the context of a comprehensive psychoeducational evaluation and provided as part

when used in the context of a comprehensive psychoeducational evaluation and provided as part of a global treatment strategy (Connor 2002). The best practice for psychoeducational treat-ment of behavior problems should be based on principles and methods of positive behavior sup-port (Rogers and Vismara 2008). That is, it should be a treatment that uses functional assessment to determine the function (or functions) of problem behavior. After identifying the function, a positive behavior support

(or functions) of problem behavior. After identifying the function, a positive behavior support plan must be designed and implemented, aimed at teaching new functional behaviors that serve to replace the problem behav-ior. Horner et al. (2002) suggest that a support plan should take into account several elements, and a few of those are as follows:

1. Prevent behavior problems by organizing the environment in order to experience less nega-tive events and greater accessibility of reward-ing activities.
2. If there are behavioral problems, conduct a functional assessment. 3. Build a behavioral intervention to make the problem behavior irrelevant, by teaching socially appropriate behaviors that make the person much more competent in the context and produce the same effect in the context of the problem behavior.

4. Organize the consequences for appropriate behavior to compete with problem behavior, avoiding also the reinforcement of problem behavior.
5. Ensure that the procedures are within the skills, resources, and values of those who must implement them.

Parent training based on principles of applied behavior analysis has great empirical support. Successful programs for individuals with ASD and problem behavior include a parent training component usually based on principles of applied behavior analysis. Common parent training ele-ments include teaching behavioral principles and management techniques, role-playing, homework assignments, teaching play and social skills, use of visual schedules, and home visits or telephone consultation, among

play and social skills, use of visual schedules, and home visits or telephone consultation, among others. Pharmacotherapy is common among individuals with ASD with behavior difficulties. The most used agents include selective serotonin reuptake inhibi-tors, antipsychotics, alpha 2 adrenergic agonists, psychostimulants, and anticonvulsants. But empiri-cal support for use of these agents in ASD varies widely. A classic study on the use of Risperidone (McCracken et al. 2002) concluded that this

widely. A classic study on the use of Risperidone (McCracken et al. 2002) concluded that this psy-choactive drug is effective and well tolerated for the treatment of tantrums, aggression, or self-injurious behavior in children with ASD, although the short period of the trial in this study limits inferences about adverse effects. Risperidone, like other atyp-ical antipsychotics, is associated with adverse events, such as weight gain, and the subsequent risk of metabolic syndrome. A recent trial

adverse events, such as weight gain, and the subsequent risk of metabolic syndrome. A recent trial by Aman et al. (2009) tested whether combined treat-ment with risperidone and parent training in behav-ior management is superior to medication alone in improving severe behavioral problems. Results indicated that parent training plus medication pro-duced greater reduction of problem behavior than medication alone in children with ASD.

Confidentiality  ### Definition  Confidentiality refers to a general standard of professional conduct, as well as, in some cases, the legal requirement for providers and/or researchers to maintain the privacy of a patient’s personal health information and records unless consent to release the information is obtained from the patient. In the case of minors, this con-sent may be obtained from the patient’s parent (s) or legal guardian(s), and rules around confi-dentiality related to minors may

patient’s parent (s) or legal guardian(s), and rules around confi-dentiality related to minors may vary by state.

### Historical Background  Confidentiality is important in order to establish trust between providers and patients and to protect patient privacy. Confidentiality can be bound by both ethical and legal standards. For example, the American Psychological Association’s Ethical Principles of Psychologists and Code of Conduct provides ethical guidelines regarding a psycholo-gist’s obligation to take reasonable precautions to protect confidential information related to the patient (Standard 4; APA

reasonable precautions to protect confidential information related to the patient (Standard 4; APA 1992). In 1996, The U.S. Department of Health and Human Services (HHS) established the Health Insurance Portabil-ity and Accountability Act (HIPAA), Public Law 104–191, and issued a Privacy Rule to implement the legal requirement for providers to protect the privacy of a patient’s medical records or personal health information, including information related to mental health. In the case of minors,

personal health information, including information related to mental health. In the case of minors, according to HIPAA, parents have the legal right to access their child’s records and personal information. In certain specific situations, providers may share information without the patient’s consent. Com-mon exceptions may include cases that involve a court order to release protected information, cases in which there is suspicion of domestic violence, abuse or neglect of children, the elderly,

cases in which there is suspicion of domestic violence, abuse or neglect of children, the elderly, or people with disabilities, or in order to protect the patient or the public from serious harm (Tarasoff 1974, 1976).

### Current Knowledge  Since it was created, the HIPAA has undergone several revisions and updates in order to further protect the confidentiality and privacy of health information, including electronic protected health information (PHI). In 2002, the HHS modified the Privacy Rule associated with HIPAA to set national standards for the protection of individu-ally identifiable health information by health plans, health care clearinghouses, and health care providers. In 2003, HHS published a final

health plans, health care clearinghouses, and health care providers. In 2003, HHS published a final Secu-rity Rule to set national standards for protecting the confidentiality of electronic PHI.

### Future Directions  Confidentiality remains a sensitive and, at times, controversial topic, particularly as it relates to determining exceptions or limitations to confiden-tiality, such as in the treatment of minors or when the risks may outweigh the benefits (e.g., Tarasoff 1974, 1976). Some have proposed guidelines and recommendations related to dealing with issues of confidentiality when working with various populations (APA 1992; Gustafson and McNamara 1987; Koocher and Keith-Spiegel 1990).

with various populations (APA 1992; Gustafson and McNamara 1987; Koocher and Keith-Spiegel 1990). Future investigations may focus on further delineating the ethical and legal boundaries and limits around cases of confidentiality. Furthermore, research should explore the important considerations to make with regards to assessing competence and respecting confidentiality in individuals with autism spectrum disorders and other developmen-tal disabilities.

Congenital Disorders  ### Definition  Congenital disorders are those disorders that are present at the time of birth and involve an abnor-mality of structure and/or function that has arisen during development. Congenital disorders are not necessarily genetic though do include genetic dis-orders. All genetic disorders are congenital as they are present at birth even if they are not yet detected at birth. Congenital disorders may arise as a result of the intrauterine environment, errors in

at birth. Congenital disorders may arise as a result of the intrauterine environment, errors in embry-onic development, and infections. The outcome of such disorders varies widely and is dependent upon the disorder itself and the availability of possible postnatal treatments. Examples of con-genital disorders include diseases such as cystic fibrosis, physical anomalies such as having a sixth finger on the hand, metabolic diseases such as congenital adrenal hyperplasia, and trisomy 21 which is

on the hand, metabolic diseases such as congenital adrenal hyperplasia, and trisomy 21 which is also known as Down syndrome.

Conners’ Continuous Performance Test  ### Description  The Conners’ Continuous Performance Test is an attention test for research and clinical settings (Conners 1995). It is used for measuring pro-cesses related to vigilance, response inhibition, signal detection, and other aspects of performance (Conners et al. 2003). The test is presented in a game-like format where 360 letters (approximately 1 in. in size and bold faced) appear on the computer screen, one at a time, for approximately 250

1 in. in size and bold faced) appear on the computer screen, one at a time, for approximately 250 ms. Respondents are required to press the space bar or click the mouse button when any letter except the letter “X” appears on the screen (Conners and MHS Staff 2000). The CPT-II standard paradigm consists of six blocks, with each block divided into three 20-trial sub-blocks. Each sub-block has a separate inter-stimulus interval (i.e., the time in between the letter presentations). The

has a separate inter-stimulus interval (i.e., the time in between the letter presentations). The inter-stimulus intervals (ISIs) are 1, 2, or 4 s. The order of the three different ISI conditions varies from block to block (Conners et al. 2003). The CPTII can be completed in 14 min. The test can be administered to participants 6 years of age and above. After the test session, the program generates a report that includes response times, omission errors (i.e., when a response is not given after a

a report that includes response times, omission errors (i.e., when a response is not given after a non-X appears on screen), commission errors (i.e., when a response is given after an X appears on screen), change in reaction time speed and consistency as the test progresses, and change in reaction time speed and consistency for different inter-stimulus intervals. Examination of the results by blocks and varying ISIs allows for the assessment of vigilance and the ability to adjust to changing

and varying ISIs allows for the assessment of vigilance and the ability to adjust to changing tempo and task demands (Conners and MHS Staff 2000).

### Historical Background  The continuous performance test was first intro-duced by Rosvold and colleagues in 1956 (Spreen and Strauss 1998) to detect lapses of attention in patients with petit mal epilepsy. In this early ver-sion, the participants were required to press a key in response to a rare target, such as the letter “X.” Subsequent CPTs have made changes to this orig-inal paradigm including having the participants press a key when the target letter is preceded by another letter (e.g.,

having the participants press a key when the target letter is preceded by another letter (e.g., “X” preceded by “A”) or upon the second successive presentation of a letter (e.g., S-S). There have also been variations with regard to modality (i.e., visual or auditory), the type of stimuli (e.g., letters, numbers, colors, or geometric figures), and the type of data that are evaluated (e.g., omissions, commissions, inter-stimulus interval, measures of sensitivity; Spreen and Strauss 1998). Conners’

commissions, inter-stimulus interval, measures of sensitivity; Spreen and Strauss 1998). Conners’ introduction of his version of the CPT in 1995 represented a departure from the more traditional CPT paradigm. In the earlier ver-sions, participants typically sit passively while observing the presentation of nontarget stimuli and must respond to the occasional target stimulus (usually an “X”). In Conners’ version, which is also sometimes called the “not-X” CPT, partici-pants are asked to press a

version, which is also sometimes called the “not-X” CPT, partici-pants are asked to press a button on each trial (usually letters), except for the letter X. Barkley (2006) notes that this task requires a different form of response inhibition. Conners et al. explain that Conners’ “not-X” CPT places a greater demand on response inhibition due to the frequent responding interrupted by the occasional nontar-gets (the less probable “X”) as opposed to the more passive responding of the conventional

nontar-gets (the less probable “X”) as opposed to the more passive responding of the conventional “X” task. Conners has since come out with an updated version of his CPT, the Conners’ Continuous Per-formance Test (2nd ed.; Conners’ CPT-II; Conners and MHS Staff 2000). The updated ver-sion differs from the previous version in that it is based on new and expanded norms that include a large subsample of neurologically impaired indi-viduals. This allows for comparison of responses to general

of neurologically impaired indi-viduals. This allows for comparison of responses to general population norms, ADHD norms, and neurologically impaired norms. The program itself includes validity checks to flag certain con-ditions that may adversely affect CPT II adminis-tration and a Confidence Index that enables the practitioner to gauge the certainty of the assess-ment/classification.

### Psychometric Data  The CPT-II normative data included 2,521 partic-ipants. Of this, 1,920 were healthy individuals from the general population, 378 were diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD), and 223 were adult individuals identi-fied with some type of neurological impairment (e.g., head injuries, dementias). Normative data were collected from 30 sites in 16 states and three Canadian provinces. The multi-site, nonclinical data came from schools, organizations,

and three Canadian provinces. The multi-site, nonclinical data came from schools, organizations, science centers, and controlled research settings. The norms were divided into eight age groups. For children of ages 4 through 17, norms were pro-vided in 2-year increments. For adults aged 18 and older, they were divided into three age groups (18–34, 35–54, and 55 +). The applicability of CPT-II norms to Asian and African American groups was also assessed. Scores for the Asian group were

norms to Asian and African American groups was also assessed. Scores for the Asian group were consistent with those obtained in the general population. However, the African Ameri-can group made slightly fewer commission errors than the general population, and showed slightly better discriminatory power as measured by the statistic d prime. Overall, the general population norms were reportedly applicable to these minor-ity groups. In fact, there were no significant dif-ferences on the overall

applicable to these minor-ity groups. In fact, there were no significant dif-ferences on the overall profile indexes (Conners and MHS Staff 2000).

Three types of reliability information were provided on the CPT-II manual: Split-half reli-ability, test-retest reliability, and standard error of measurement (Conners and MHS Staff 2000). The split-half reliability information from the original CPTwas cited. These appeared adequate and ranged from 0.66 to 0.95. Test-retest reli-ability was obtained using 23 participants in the standardization of the CPT-II. The average inter-val between administrations was 3 months. The test-retest

of the CPT-II. The average inter-val between administrations was 3 months. The test-retest reliability estimates ranged from 0.05 to 0.92 with most of the variables showing good consistency across administrations. However, the Block change and ISI change statistics have low test-retest correlations, suggesting that these variables do not produce good consistency across administrations. When measures are com-bined into indices for ADHD and neurological assessment, the test-retest reliabilities

are com-bined into indices for ADHD and neurological assessment, the test-retest reliabilities were excellent, 0.89 and 0.92 respectively. Using the same test-retest data, it was also demonstrated that the CPT-II had no significant practice effect. In addition, information on standard error of measurement and standard error of prediction for the various CPT-II measures across gender and age was presented. Conners and the MHS Staff (2000) cited research to support the clinical utility of the CPT.

Conners and the MHS Staff (2000) cited research to support the clinical utility of the CPT. In a study based on the original standardiza-tion sample, significant differences were seen between the ADHD group and other diagnoses across most of the CPT variables. The ADHD group responded more slowly, had greater vari-ability of reaction times, made more omission and commission errors, and was more affected by changes in ISI. In similar analyses using the updated CPT-II data, no significant

more affected by changes in ISI. In similar analyses using the updated CPT-II data, no significant difference was observed between ADHD and nonclinical groups; for all other analyses, there was a large and significant difference between ADHD and nonclinical groups with the ADHD groups performing worse on all of the measures. For the adults aged 18 years and older, planned compari-sons were done to see if the nonclinical group differed from the clinical groups, and if the two clinical groups

to see if the nonclinical group differed from the clinical groups, and if the two clinical groups differed from each other. As pre-dicted, the clinical groups performed significantly worse than the nonclinical group. Compared to the ADHD group, the Neurological group made significantly more omission errors, had signifi-cantly slower reaction times, and was significantly less consistent across the interstimulus intervals.

### Clinical Uses  The CPT paradigm has traditionally been included in evaluations for ADHD. Barkley (2006) states that, “A wide-ranging literature has shown it to be the most reliable of psychological tests for discriminating groups of children with ADHD from nondisabled children” (p. 377). Spreen, Risser, and Edgell (1995) report that on a continuous performance task hyperactive chil-dren make more errors of omission and of com-mission, show more rapid deterioration in performance than

make more errors of omission and of com-mission, show more rapid deterioration in performance than controls, and are less able to inhibit premature or repetitive responding, indi-cating poor impulse control. Lezak, Howieson, and Loring (2004) state that on the CPT, adults with ADHD have a high reaction time variability and higher rate of commission errors than con-trol subjects, which suggests that they have trou-ble inhibiting responses. According to Spreen and Strauss, the CPTs have also been

they have trou-ble inhibiting responses. According to Spreen and Strauss, the CPTs have also been shown to distinguish between normal controls and certain patient groups including adults with head inju-ries and children with conduct disorder, learning disabilities, and those at high risk for schizophre-nia. In addition, Barkley and Spreen and Strauss report that CPTs are sensitive to stimulant drug effects among children and adolescents with ADHD.

Barkley has raised some concern about the diagnostic utility of the Conners’ CPT, in particu-lar, in ADHD assessments. Citing one study that investigated associations between Conners’ CPT scores and several other measures, including par-ent and teacher ratings as well as neuropsycholog-ical and achievement tests, Barkley reported that the Conners CPT’s overall index failed to relate to parent and teacher ratings. In addition, only half of those participants who met criteria for ADHD “failed”

teacher ratings. In addition, only half of those participants who met criteria for ADHD “failed” the CPT. Barkley also reported poor dis-criminant validity, in that children with a reading disability actually performed more poorly than children with ADHD. In another study on the ecological validity of the CPT-II in a school-based sample, Barkley cited findings showing nonsignificant relationships between CPT perfor-mance and three other kinds of measures (parent ratings, teacher ratings, and

between CPT perfor-mance and three other kinds of measures (parent ratings, teacher ratings, and classroom observa-tions). He also reported negative correlation between IQ and omission errors on the CPT-II, suggesting that the CPT-II may measure letter recognition skills or phonological awareness rather than impulsivity or inattention per se. Despite these concerns, Barkley still holds that the CPT is the only psychological measure that seems to directly assess the core symptoms of ADHD,

the CPT is the only psychological measure that seems to directly assess the core symptoms of ADHD, namely, impulsivity and attention. How-ever, he warns that if a child performs well on this measure, it does not indicate that the child is nondisabled or without ADHD because of the high rate of false negatives (i.e., children who are rated by parents and teachers as having ADHD, but who obtain average scores on the test) associated with CPTs. He joins Conners (2000) in reminding the clinician

scores on the test) associated with CPTs. He joins Conners (2000) in reminding the clinician that the test pro-vides one source of information to be integrated with other sources (e.g., self-report data, observer-based data, historical information, interview data, and results from other tests) in reaching a final diagnostic decision.

The use of continuous performance tests in assessing children with autism spectrum disorders is less common. Three studies were found but none of them used the Conners’ CPT-II. In the first study, 23 children with autism were compared with two control groups (one matched based on verbal men-tal age and another based on performance mental age) on several attention measures including three versions of the traditional CPT paradigm (Pascualvaca et al. 1998). The results showed that none of the CPT

of the traditional CPT paradigm (Pascualvaca et al. 1998). The results showed that none of the CPT versions differentiated between the groups. In the second study, Schatz, Weimer, and Trauner (2002) explored the use of the Test of Variables of Attention (TOVA) in assessing atten-tion deficit symptoms in a group of eight children and young adults with Asperger’s Syndrome (AS). The TOVA is a continuous performance test that is similar to the Conners’ CPT but with an additional auditory component.

performance test that is similar to the Conners’ CPT but with an additional auditory component. Five of eight subjects with AS received scores that suggested the presence of an attention deficit, whereas only two of eight subjects received scores suggestive of an attention deficit. The authors looked at this as a pattern that could be explored using a bigger sample. In the third study, Corbett and Constantine (2006) compared children with autism spectrum disorder (ASD) with those that have been

Constantine (2006) compared children with autism spectrum disorder (ASD) with those that have been diagnosed with ADHD and typically developing children using the Integrated Visual and Auditory Continuous Performance Test, another version of a CPT. They found that children with ASD show significant deficits in visual and audi-tory attention and greater deficits in impulsivity than children with ADHD or typically developing children. The authors note that the findings suggest that many of the

ADHD or typically developing children. The authors note that the findings suggest that many of the children with ASD demonstrate significant ADHD-like symptoms. They point out that this study adds to the growing literature that calls into question the current exclusionary practice of offering a diagnosis of ADHD in pervasive developmental disorders. Two other variables that might be relevant in the performance of individuals with autism spec-trum disorders on the CPT-II are anxiety and

in the performance of individuals with autism spec-trum disorders on the CPT-II are anxiety and intelligence. Conners and the MHS Staff pre-sented data showing that anxiety may affect a participant’s CPT-II response style and lead to response inhibition for physiological anxiety, and decrease in response inhibition for cognitive anxiety. In terms of intelligence, the manual included two studies that showed nonsignificant correlations between IQ as measured by the WISC and CPT performance. Still

showed nonsignificant correlations between IQ as measured by the WISC and CPT performance. Still it was noted in the manual that some individuals with severe cogni-tive impairment, agitation, or severe psychotic symptoms cannot be administered the CPT-II.

Conners’ Parent Rating Scale  ### Description  The Conners’ Parent Rating Scale (CPRS) is a parent-report measure that assesses children’s problem behaviors, particularly symptoms of attention deficit hyperactivity disorder (ADHD) and related disorders (including oppositional defi-ant disorder and conduct disorder). At the time of publication, the Conners 3-P (2008) is the current version of the CPRS. Parents of children with autism spectrum disorders may be asked to com-plete the Conners 3-P

CPRS. Parents of children with autism spectrum disorders may be asked to com-plete the Conners 3-P because of the shared symp-toms between ADHD and autism spectrum disorders. The Conners 3-P was developed by C. Keith Conners, Ph.D., who also designed two related measures: the Conners’ Teacher Rating Scales (CTRS), a teacher-report measure, and the Conners’ Self-Report Scales (CSRS), a self-report measure for children and adolescents. Because these measures are meant to be used in conjunction,

measure for children and adolescents. Because these measures are meant to be used in conjunction, the family of Conners’ tests is con-sidered to be a “multi-informant” mode of assess-ment. This is valuable because it can yield information about children’s behaviors in multiple settings. For example, asking a parent to complete the Conners 3-P and asking a teacher to complete the Conners 3-T (for “teacher”) can shed light on how a child’s behavior may differ between home and school.

### Historical Background  Gianarris, Golden and Greene (2001) provide a detailed overview of the multiple versions of the Conners’ Parent Rating Scales. The roots of the Conners 3-P date back to the 1960s, when C. Keith Conners, Ph.D., created behavior rating scales based on his multiple observations of chil-dren and adolescents with behaviors consistent with what is now known as ADHD. He performed factor analysis to determine how these behaviors fit together and first published his findings in

factor analysis to determine how these behaviors fit together and first published his findings in 1970. One of the earliest aims of Conners’ work was to track changes in children’s behavior fol-lowing medication use. In 1973, Conners released a 93-item checklist of behaviors that came to be known as the original Conners’ Parent Rating Scale. It was quickly adopted as a diagnostic tool even though it did not have a normative sample of the kind structured for empirical sup-port that is required to

did not have a normative sample of the kind structured for empirical sup-port that is required to establish a new assessment tool today. It was not until 1989 that Conners’ sample was formalized and expanded, and that the CPRS was published and shared widely. In 1998, the CPRS-R (for “revised”) was released, and in 2008, the third and most recent edition, the Conners 3-P, was released. The Conners 3-P is currently available in English and Spanish. The similarities and differences between these

3-P is currently available in English and Spanish. The similarities and differences between these ver-sions are explored below in the section “Psycho-metric Data.”

### Psychometric Data  The format and response style of the measure have remained quite consistent throughout the revi-sions of the Conners 3-P. In all three versions, the respondent (the parent completing the mea-sure) is asked to reflect on his or her child’s actions over the past month and to respond to a series of items describing mainly problem behaviors (e.g., “gets distracted when given instructions to do something”). For each item, the respondent is asked to mark 0 (“not true at

instructions to do something”). For each item, the respondent is asked to mark 0 (“not true at all/never/seldom”), 1 (“just a little true/occasionally”), 2 (“pretty much true/often/quite a bit”), or 3 (“very much true/very often/very frequent”) to describe the extent to which their child engages in or demon-strates the given behavior. The Conners 3-P has a long-form version (110 questions), a short-form version (45 of the 110 total questions), an ADHD Index (10 of the 110 total questions), and

version (45 of the 110 total questions), an ADHD Index (10 of the 110 total questions), and a Global Index (10 of the 110 questions). Previous versions also offered longer and shorter forms. There are circumstances in which one form would be preferable over another; this largely has to do with the reason for testing. For example, using the long-form version of the Conners 3-P might be preferable to using one of the shorter forms when conducting an initial assessment. Revisions were made (e.g.,

to using one of the shorter forms when conducting an initial assessment. Revisions were made (e.g., transitioning from the CPRS to the CPRS-R, and again from the CPRS-R to the Conners 3-P) in order to strengthen the psychometric properties of the instrument. Most available literature focuses on the psychometric properties of the CPRS-R and the Conners 3-P. The CPRS-R contains the fol-lowing subscales: Oppositional (long and short forms), Social Problems (long form only), Cogni-tive

subscales: Oppositional (long and short forms), Social Problems (long form only), Cogni-tive Problems/Inattention (long and short forms), Psychosomatic (long form only), Hyperactivity (long and short forms), DSM-IV Symptom Sub-scales (long form only), Anxious-Shy (long form only), ADHD Index (long and short forms), Per-fectionism (long form only), and Conners’ Global Index (long form only). The same subscales appear on the CTRS-R with the exception of the Psychosomatic subscale, which is not

same subscales appear on the CTRS-R with the exception of the Psychosomatic subscale, which is not included. Both raw scores and T scores are generally reported for each subscale; T scores are standard-ized scores with a mean of 50 and a standard deviation of 10. For example, a child with a T score of 50 on the Oppositional subscale would have about the same level of oppositional behaviors as the average child his or her age in the normative sample. Higher T scores are associated with higher

average child his or her age in the normative sample. Higher T scores are associated with higher levels of problem behaviors. Internal consistency coefficients of the CPRS-R (in other words, measures of how well the individual items of the measure “hang” together and form the subscales listed above) for the total sample range from .77 to .96. The test-retest reliability coefficients – a measure of how similarly a child will be rated shortly following an initial assessment with the CPRS-R – range

how similarly a child will be rated shortly following an initial assessment with the CPRS-R – range from .47 to .86. As previously discussed, the CPRS-R is designed to be sensitive to changes in behavior, particularly following medication use, and this might explain partially the lower test-retest reli-ability coefficients.

Some significant changes were made to the CPRS-R to create the Conners 3-P. The publishers of the Conners 3-P point to the large normative sample (n ¼ 1200) that reflects the 2000 US Census information on race and ethnicity, gender, and parental education level as particular strength of the measure. While the test creators were care-ful to include a diverse normative sample in their development of the Conners 3-P, it is important to point out that the validity of the Conners’ tests in diverse

of the Conners 3-P, it is important to point out that the validity of the Conners’ tests in diverse cultures has not yet been established and represents an active area to study. The Conners 3-P includes the use of 1-year, instead of 3-year, age bands to compare children’s scores to the normative sample (e.g., 4-year-olds are now com-pared only to other 4-year-olds, instead of to 4-, 5-, and 6-year-olds). Also, the Conners 3-P includes optional combined gender norms for boys and girls – the

Also, the Conners 3-P includes optional combined gender norms for boys and girls – the norms had been strictly sep-arated by gender in the previous versions – and the combined norms can be helpful for understanding behavior within the context of settings, such as the classroom, that are very frequently coed. The Conners 3-P also has a greater focus on differen-tial diagnosis (or, in other words, teasing apart symptoms of ADHD from symptoms of related disorders) and this is reflected in its

teasing apart symptoms of ADHD from symptoms of related disorders) and this is reflected in its normative sample. Additionally, the age range of the Conners 3-P, at 6–18 years old, is slightly narrower than the age range, 3–17 years, of the previous CPRS versions. The age range was extended to 18 years, 11 months to capture adjust-ment through the end of high school; it was lim-ited to 6 years, 0 months so that early experiences can be assessed more thoroughly with a separate measure, the

0 months so that early experiences can be assessed more thoroughly with a separate measure, the Conners Early Childhood (EC). The Conners 3-P contains the following con-tent scales: inattention, hyperactivity/impulsivity, learning problems, executive functioning, aggres-sion, and peer/family relations. It also contains four symptoms scales – ADHD Inattentive, ADHD Hyperactive-Impulsive, Conduct Disor-der, and Oppositional Defiant Disorder – that map onto the diagnostic criteria put forth in the

and Oppositional Defiant Disorder – that map onto the diagnostic criteria put forth in the Diagnostic and Statistical Manual of Mental Dis-orders, fourth edition, text revision (DSM-IV-TR). New to the Conners 3-P include validity scales (which indicate how a parent is responding to the items and whether or not the information he or she provides is interpretable), screening items for childhood anxiety and depression, critical items (which require immediate follow-up by the researcher or clinician

and depression, critical items (which require immediate follow-up by the researcher or clinician administering the measure), and impairment items (which indicate decreased functioning in certain life areas, like social relationships). The Conners 3-P is also notable for the way in which it maps onto the Individuals with Disabilities Education Act (IDEA); in other words, how a child is rated by his or her parent on the Conners 3-P might carry implications for the services he or she is eligible

or her parent on the Conners 3-P might carry implications for the services he or she is eligible to receive in school.

Both test-retest reliability and internal consis-tency have been found to be very good for the Conners 3-P, and for the overall family of Conners 3 assessments. According to data put forth by the publisher, internal consistency coefficients (in other words, measures of how well the indi-vidual items of the measure “hang” together and form the subscales listed above) for the overall content scales is .91 and for the DSM-IV-TR scales, .90. A breakdown of internal consistency coefficients by

scales is .91 and for the DSM-IV-TR scales, .90. A breakdown of internal consistency coefficients by Conners 3-P subscale are the fol-lowing: inattention ¼ .93, hyperactivity/impulsiv-ity ¼ .94, learning problems ¼ .90, executive functioning ¼ .92, aggression ¼ .91, peer relations ¼ .85, ADHD Inattentive ¼ .93, ADHD Hyperactive-Impulsive ¼ .92, Conduct Disorder ¼ .83, and Oppositional Defiant Disorder ¼ .83. The 2–4-week test-retest reliabil-ity coefficients – a measure of how similarly a child

¼ .83. The 2–4-week test-retest reliabil-ity coefficients – a measure of how similarly a child will be rated 2 weeks and again 4 weeks following an initial assessment with the Conners 3-P – was also very good in the overall Conners’ sample (Cronbach’s alpha ¼ .71 to .98, with all correlations significant at the p <.001 level). Inter-rater reliability coefficients (a measure of how likely two different respondents, such as a mother and father, or a parent and teacher, are to rate the same child’s

respondents, such as a mother and father, or a parent and teacher, are to rate the same child’s behavior) in the overall Conners’ sample are also acceptable to excellent, ranging from .52 to .94. Continuity between the CPRS-R and the Conners 3-P was demonstrated, and tests of factorial, convergent, divergent, and discriminant validity were also performed on the Conners 3-P.

### Clinical Uses  The Conners 3-P is a useful tool when a child is experiencing behavioral difficulty at home or at school. The Conners 3-P may indicate whether a child’s symptoms are consistent with ADHD or a related disorder. While it includes ques-tions about different symptoms in parent-friendly and accessible language, it does not elicit all of the information that would be needed to make a formal diagnosis. It is impor-tant to note that a high score on the Conners 3-P alone is not

make a formal diagnosis. It is impor-tant to note that a high score on the Conners 3-P alone is not sufficient to diagnose a child; instead, it is only one piece of information that clinicians will consider when making a diagnosis, if one is warranted. If a child has a diagnosis, then the Conners 3-P can be used to track changes in his or her behavior over time; this is especially important if a child receives intervention, medication, or special services to address his or her behavioral

if a child receives intervention, medication, or special services to address his or her behavioral challenges. Some-times, the Conners 3-P is used in the absence of any behavioral problems – it can be used as a screener, or in a routine manner. Because of the overlap between behaviors – particularly externalizing ones – associated with ADHD and those associated with autism spec-trum disorders, it is helpful to understand the function of the Conners 3-P. Also, since autism spectrum disorders

it is helpful to understand the function of the Conners 3-P. Also, since autism spectrum disorders sometimes coexist with intel-lectual disabilities (ID), it is important to under-stand how the psychometric properties of the Conners’ tests hold up among children with ID. Deb, Dhaliwal and Roy (2008) undertook this research with the CPRS-R and the CTRS-R and found that parents and teachers differed sig-nificantly in how they rated children with ID (whereas significant correlations between their

sig-nificantly in how they rated children with ID (whereas significant correlations between their reports would be expected, based on previously published psychometric data). Also, the authors noted that some of the items were not applicable to children with severe or profound ID, and/or who were nonverbal (as are some children with autism spectrum disorders). These findings have implications for using the Conners’ tests to assess children with known autism spectrum dis-orders and ID.

Conners’ Teacher Rating Scale  ### Description  The Conners’ Teacher Rating Scale (CTRS) is a teacher-report measure that assesses children’s problem behaviors, particularly symptoms of attention deficit hyperactivity disorder (ADHD) and related disorders (including oppositional defi-ant disorder and conduct disorder). At the time of publication, the Conners 3-T (2008) is the current version of the CTRS. Teachers of children with autism spectrum disorders or suspected autism spectrum disorders

CTRS. Teachers of children with autism spectrum disorders or suspected autism spectrum disorders may be asked to complete the Conners 3-T because of the shared symptoms between ADHD and autism spectrum disorders. The Conners 3-T was developed by C. Keith Conners, Ph.D., who also designed two related measures: the Conners’ Parent Rating Scales (CPRS), a parent-report measure, and the Conners’ Self-Report Scales (CSRS), a self-report measure for children and adolescents. Because these measures

Scales (CSRS), a self-report measure for children and adolescents. Because these measures are meant to be used in conjunc-tion, the family of Conners’ tests is considered to be a “multi-informant” mode of assessment. This is valuable because it can yield information about children’s behaviors in multiple settings. For example, asking a teacher to complete the Conners 3-Tand a parent to complete the Conners 3-P can shed light on how a child’s behavior may differ between home and school.

### Historical Background  The Conners 3-T shares a great deal of history with the Conners 3-P. The roots of these assess-ments date back to the 1960s, when C. Keith Conners, Ph.D., created behavior rating scales based on his multiple observations of children and adolescents with behaviors consistent with what is now known as ADHD. He performed factor analysis to determine how these behaviors fit together and first published his findings in 1970. One of the earliest aims of Conners’ work was to

together and first published his findings in 1970. One of the earliest aims of Conners’ work was to track changes in children’s behavior fol-lowing medication use. In 1973, Conners released a 93-item checklist of behaviors that came to be known as the original Conners’ Parent Rating Scale. It was quickly adopted as a diagnostic tool even though it did not have a normative sample of the kind structured for empirical sup-port that is required to establish a new assessment tool today. It was not

for empirical sup-port that is required to establish a new assessment tool today. It was not until 1989 that Conners’ sample was formalized and expanded, and that the CTRS, along with the CPRS, was published and shared widely. In 1998, the CTRS-R (for “revised”) was released, and in 2008, the third and most recent edition, the Conners 3-T, was released. The Conners 3-T is currently available in English and Spanish. The similarities and differ-ences between these versions is explored below in

English and Spanish. The similarities and differ-ences between these versions is explored below in the section “Psychometric Data.”

### Psychometric Data  The format and response style of the measure have remained quite consistent throughout the revi-sions of the Conners 3-T. In all three versions, the respondent (the teacher completing the mea-sure) is asked to reflect on his or her student’s actions over the past month and to respond to a series of items describing mainly problem behav-iors (for example, “leaves seat when he/she should stay seated”). For each item, the respondent is asked to mark 0 (“not true at

when he/she should stay seated”). For each item, the respondent is asked to mark 0 (“not true at all/never/seldom”), 1 (“just a little true/occasionally”), 2 (“pretty much true/often/quite a bit”), or 3 (“very much true/very often/very frequent”) to describe the extent to which their student engages in or dem-onstrates the given behavior. The Conners 3-T has a long-form version (115 questions), a short-form version (41 of the 110 total questions), an ADHD Index (10 of the 110 total questions),

short-form version (41 of the 110 total questions), an ADHD Index (10 of the 110 total questions), and a Global Index (10 of the 110 questions). Previous versions also offered longer and shorter forms. There are circumstances in which one form would be preferable over another; this largely has to do with the reason for testing. For example, using the long-form version of the Conners 3-T might be preferable to using one of the shorter forms when conducting an initial assessment. Revisions were

preferable to using one of the shorter forms when conducting an initial assessment. Revisions were made (e.g., transitioning from the CTRS to the CTRS-R, and again from the CTRS-R to the Conners 3-T) in order to strengthen the psychometric properties of the instrument. Most available literature focuses on the psychometric properties of the CTRS-R and the Conners 3-T. The CTRS-R, like the CPRS-R, contains the following subscales: Oppositional (long and short forms), Social Problems (long form

contains the following subscales: Oppositional (long and short forms), Social Problems (long form only), Cognitive Problems/Inattention (long and short forms), Hyperactivity (long and short forms), DSM-IV Symptom Subscales (long form only), Anxious-Shy (long form only), ADHD Index (long and short forms), Perfection-ism (long form only), and Conners’ Global Index (long form only). Unlike the CPRS-R, the CTRS-R does not contain the Psychosomatic sub-scale. Both raw scores and T scores are

CPRS-R, the CTRS-R does not contain the Psychosomatic sub-scale. Both raw scores and T scores are generally reported for each subscale; T scores are standard-ized scores with a mean of 50 and a standard deviation of 10. For example, a child with a T score of 50 on the Oppositional subscale would have about the same level of oppositional behaviors as the average child his or her age in the normative sample. Higher T scores are associated with higher levels of problem behaviors. Internal

normative sample. Higher T scores are associated with higher levels of problem behaviors. Internal consistency coefficients of the CPRS-R (in other words, measures of how well the individual items of the measure “hang” together and form the subscales listed above) for the total sam-ple range from .77 to .96. The test-retest reliability coefficients – a measure of how simi-larly a child will be rated shortly following an initial assessment with the CPRS-R – range from .47 to .86. As previously

shortly following an initial assessment with the CPRS-R – range from .47 to .86. As previously discussed, the CPRS-R is designed to be sensitive to changes in behavior, particularly following medication use, and this might explain partially the lower test-retest reli-ability coefficients.

Some significant changes were made to the CTRS-R to create the Conners 3-T. The publishers of the Conners 3-T point to the large normative sample (n ¼ 1200) that reflects the 2000 US Census information on race and ethnicity, gender, and parental education level as particular strength of the measure. The Conners 3-T includes the use of 1-year, instead of 3-year, age bands to compare children’s scores to the normative sample (e.g., 4-year-olds are now compared only to other 4-year-olds, instead of

to the normative sample (e.g., 4-year-olds are now compared only to other 4-year-olds, instead of to 4-, 5-, and 6-year-olds). Also, the Conners 3-T includes optional combined gender norms for boys and girls – the norms had been strictly separated by gender in the previous versions – and the combined norms can be helpful for understanding behavior within the context of settings, such as the classroom, that are very frequently coed. The Conners 3-T also has a greater focus on differential

classroom, that are very frequently coed. The Conners 3-T also has a greater focus on differential diagnosis (or, in other words, teasing apart symptoms of ADHD from symptoms of related disorders) and this is reflected in its normative sample. Additionally, the age range of the Conners 3-T, at 6–18 years old, is slightly narrower than the age range, 3–17 years, of the previous CTRS versions. The age range was extended to 18 years, 11 months to capture adjust-ment through the end of high school;

range was extended to 18 years, 11 months to capture adjust-ment through the end of high school; it was lim-ited to 6 years, 0 months so that early experiences can be assessed more thoroughly with a separate measure, the Conners Early Childhood (EC). The Conners 3-P contains the following con-tent scales: inattention, hyperactivity/impulsivity, learning problems, executive functioning, aggres-sion, and peer relations. It also contains four symptoms scales – ADHD Inattentive, ADHD

aggres-sion, and peer relations. It also contains four symptoms scales – ADHD Inattentive, ADHD Hyperactive-Impulsive, Conduct Disorder, and Oppositional Defiant Disorder – that map onto the diagnostic criteria put forth in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition, text revision (DSM-IV-TR). New to the Conners 3-T include validity scales (which indi-cate how a teacher is responding to the items and whether or not the information he or she provides is

how a teacher is responding to the items and whether or not the information he or she provides is interpretable), screening items for childhood anxiety and depression, critical items (which require immediate follow-up by the researcher or clinician administering the measure), and impair-ment items (which indicate decreased functioning in certain life areas, like social relationships). The Conners 3-T is also notable for the way in which it maps onto the Individuals with Disabilities Edu-cation

3-T is also notable for the way in which it maps onto the Individuals with Disabilities Edu-cation Act (IDEA); in other words, how a child is rated by his or her teacher on the Conners 3-T might carry implications for the services he or she is eligible to receive in school.

Both test-retest reliability and internal consis-tency have been found to be very good for the Conners 3-T, and for the overall family of Conners 3 assessments. According to data put forth by the publisher, internal consistency coefficients (in other words, measures of how well the indi-vidual items of the measure “hang” together and form the subscales listed above) for the total sam-ple range from .77 to .97. The 2–4-week test-retest reliability coefficients – a measure of how simi-larly a

from .77 to .97. The 2–4-week test-retest reliability coefficients – a measure of how simi-larly a child will be rated 2 weeks and again 4 weeks following an initial assessment with the Conners 3-T – was also very good (Cronbach’s alpha ¼ .71 to .98, with all correlations significant at the p < .001 level). Inter-rater reliability coef-ficients (a measure of how likely two different respondents, such as a mother and father, or a parent and teacher, are to rate the same child’s behavior) are also

as a mother and father, or a parent and teacher, are to rate the same child’s behavior) are also acceptable to excellent, ranging from .52 to .94. Continuity between the CTRS-R and the Conners 3-T was demonstrated, and tests of factorial, convergent, divergent, and discrimi-nant validity were also performed on the Conners 3-T.

### Clinical Uses  The Conners 3-T is a useful tool when a child is experiencing behavioral difficulty at school or at home. The Conners 3-P may indicate whether a child’s symptoms are consistent with ADHD or a related disorder. While it includes questions about different symptoms in user-friendly and accessi-ble language, it does not elicit all of the informa-tion that would be needed to make a formal diagnosis. It is important to note that a high score on the Conners 3-T alone is not

make a formal diagnosis. It is important to note that a high score on the Conners 3-T alone is not sufficient to diagnose a child; instead, it is only one piece of information that clinicians will consider when making a diagnosis, if one is warranted. If a child has a diagnosis, then the Conners 3-T can be used to track changes in his or her behavior over time; this is especially important if a child receives intervention, medication, educational supports, or other services to address his or her

receives intervention, medication, educational supports, or other services to address his or her behavioral challenges. Sometimes, the Conners 3-T is used in the absence of any behavioral prob-lems – it can be used as a screener, or in a routine manner. Frick, Barry, and Kamphaus (2009) note that the Conners 3-T has several strengths that suit it well for school-based assessments. For example, it focuses on ADHD and other disorders involving externalizing behaviors that can interfere with

it focuses on ADHD and other disorders involving externalizing behaviors that can interfere with children’s school performance. Also, its short ver-sions, with demonstrated validity and reliability, may be more accessible and user-friendly for teachers in busy school environments. However, the Conners 3-T has its drawbacks too, which include minimal assessment of childhood depres-sion and anxiety, which frequently include internalizing symptoms. Also, the normative sam-ple of the Conners 3-T is

which frequently include internalizing symptoms. Also, the normative sam-ple of the Conners 3-T is racially and ethnically diverse, but not to the same degree as the Conners 3-P. Additionally, there is little independent vali-dation of the Conners 3-T, aside from the data put forth by the instrument authors. Because of the overlap between behaviors – particularly externalizing ones – associated with ADHD and those associated with autism spectrum disorders, it is helpful to understand the

with ADHD and those associated with autism spectrum disorders, it is helpful to understand the function of the Conners 3-T. Also, since autism spectrum disorders sometimes coexist with intellectual dis-abilities (ID), it is important to understand how the psychometric properties of the Conners’ tests hold up among children with ID. Deb et al. (2008) undertook this research with the CPRS-R and the CTRS-R and found that parents and teachers differed significantly in how they rated children with ID

CTRS-R and found that parents and teachers differed significantly in how they rated children with ID (whereas significant correlations between their reports would be expected, based on previ-ously published psychometric data). Also, the authors noted that some of the items were not applicable to children with severe or profound ID, and/or who were nonverbal (as are some children with autism spectrum disorders). These find-ings have implications for using the Conners’ tests to assess children with

disorders). These find-ings have implications for using the Conners’ tests to assess children with known autism spectrum dis-orders and ID.

Consent  ### Definition  **In General** Consent is a voluntary agreement to participate in medical treatment, procedure, or research. A physician or other health care provider must obtain the consent of the patient or of someone legally authorized to give consent for the patient before initiating such activity. This requirement is based on the principle that every individual of sound mind has a right to determine what shall be done with his own body and to control the course of his medical

a right to determine what shall be done with his own body and to control the course of his medical treatment.

**Standard** The historical standard for legally sufficient dis-closure was the customary disclose practices of physicians in the community. The current stan-dard, however, is a more patient-oriented one. It focuses on what material information about risks a reasonable physician would believe a reasonable patient would want to know to make a decision. It thus remains objective, but with due regard for both the patient’s informational needs and physi-cian’s situation.

**Current Law** General principles of consent are the same in all jurisdictions, though specific details of the doctrine may vary. The right of consent requires several elements, including capacity (the patient is compe-tent to make decisions), information (the patient is informed of the benefits and risks), and voluntari-ness (the patient is not coerced into giving consent). Consent to medical treatment can be oral or written, express, or implied. In some jurisdictions, statutes specify the

treatment can be oral or written, express, or implied. In some jurisdictions, statutes specify the form that a patient’s consent must take. Consent is generally not required in certain circum-stances, including emergencies, therapeutic privi-lege, when the patient is incompetent, and when the patient waives having to consent. A physician’s failure to obtain consent from a patient prior to medical treatment can serve as a factual predicate to a malpractice action.

**ASD Application** Patients with developmental disabilities, such as ASD, may have cognitive, social, and mental impairments that limit their ability to provide legal consent. Minors generally cannot give consent. Instead, parents or legal guardians must give consent, preferably with the child’s assent when feasible.

Consequence-Based Interventions  ### Definition  Consequence-based interventions are implemented in response to inappropriate behaviors. These inter-ventions are designed to decrease the future likeli-hood of the inappropriate behavior occurring. Interventions are determined based on the results of a functional behavior assessment. For a consequence-based intervention to be successful, it must be in response to the function of the behav-ior. Often, antecedent and consequence-based

it must be in response to the function of the behav-ior. Often, antecedent and consequence-based inter-ventions are used in combination to decrease the probability of inappropriate behavior occurring in the future. Some examples of consequence-based interventions are differential reinforcement and its variants, extinction, response cost, and redirection.

Conservatorship (Full Conservatorship and Limited Conservatorship)  ### Definition  A conservatorship is a legal relationship in which a court gives one person, a conservator, the duty and power to make decisions about financial and property matters for the benefit and protection of a beneficiary (also referred to as a person subject to conservatorship) (Garner 2014).

### Principles of Conservatorship  Conservatorships can be a useful special needs planning tool for individuals with autism spec-trum disorder (ASD) and their caregivers (Werner & Chabany 2016). The term “conserva-tor” is generally understood as a guardian, protec-tor, or preserver of another person’s property. State courts have jurisdiction in conservatorship matters to protect individuals who are unable to care for their estate because of a severe impair-ment or disability (Uniform Law

who are unable to care for their estate because of a severe impair-ment or disability (Uniform Law Commission, 2007, 2017). A conservatorship beneficiary’s estate includes all personal assets, real property, and funds. Beneficiaries can be minors or adults. Each conservatorship must be appointed by a judge. A court order authorizes a conservator to manage and safeguard a beneficiary’s estate. Con-servators are legally required to act in a beneficiary’s best interests at all times (Devi 2013).

are legally required to act in a beneficiary’s best interests at all times (Devi 2013). Depending on the scope of a judge’s conservatorship order, a con-servator’s scope of authority can be broad and include such matters as deciding an individual’s spending priorities, budgets for activities, and trust savings allocations. In the United States, conservatorship decision-making laws contain three key principles:

1. Ensuring that a conservatorship is invoked only as a last resort and after considering the availability of support to assist people with financial decision-making.
2. Ensuring a conservatorship is as confined in scope and duration as is reasonably possible.
3. A conservator’s decision-making should always respect the will, preferences, and rights of the individual beneficiary (National Council on Disability 2018).

### Conservatorship Terminology  In the past, the terms “ward,” “incompetent per-son,” and “incapacitated person” were regularly used to describe a person with a conservatorship. Today, there is a growing movement among dis-ability rights advocates to discard these terms as outdated, derogatory, and disrespectful. Modern terminology in conservatorship cases increasingly emphasizes the importance of each individual’s right to self-determination and general autonomy (Page & Hinrichs 2017). When

of each individual’s right to self-determination and general autonomy (Page & Hinrichs 2017). When describing a per-son who receives conservatorship services, the following terms are widely used: beneficiary, conservatee, individual subject to conservator-ship, adult who is the subject of a conservatorship proceeding, protected individual, protected per-son, and principal (Dinerstein 2012). Conservatorships are largely governed by the probate laws of the individual states. The title of

Conservatorships are largely governed by the probate laws of the individual states. The title of conservator is not used consistently across all state codes, and a conservator’s requirements and functions can differ greatly among state laws. Though a small number of state laws con-sider the term “conservatorship” a synonym for a “guardianship,” the majority of states do not use the words interchangeably (Kohn et al. 2013). As a general rule, a guardian’s decision-making abil-ities include

(Kohn et al. 2013). As a general rule, a guardian’s decision-making abil-ities include decisions about both personal well-being and financial/property interests. In contrast, a conservator’s decisions are limited to only finan-cial/property matters (National Council on Disability 2019). In most states, there are two types of conserva-torships: full and limited (American Bar Associa-tion Commission on Law and Aging 2016). A full conservatorship is designed to care for all of the essential elements

Law and Aging 2016). A full conservatorship is designed to care for all of the essential elements of a beneficiary’s estate. If an individual’s circumstances do not require a full conservatorship, a judge may decide to order a limited conservatorship (also known as a partial conservatorship). In limited conservatorship cases, a conservator has a narrow scope of work in matters related to a beneficiary’s estate – these conservators can only make decisions about spe-cific situations regarding the

estate – these conservators can only make decisions about spe-cific situations regarding the beneficiary’s prop-erty matters (Wilber et al. 2001). In some states, the title of “custodianship” is used to describe a full conservatorship or various types of conserva-torship with limited authority.

### Legal Capacity in Conservatorship Cases  Before issuing a court order to appoint a conser-vator, a judge must first declare that a beneficiary lacks “legal capacity (Parker 2016). Historically, the term legal capacity was also referred to as “legal competency.” Individuals do not have legal capacity when they are deemed entirely incapable of managing financial affairs. In these instances, the individual is unable to fully safe-guard himself or herself against harm to personal wealth and/or

individual is unable to fully safe-guard himself or herself against harm to personal wealth and/or property. A judge will determine that a beneficiary lacks legal capacity based on evidence presented to the court, including medical records and testimony from treating physicians, mental health professionals, caregivers, family members, friends, and the individual under review for the conservatorship appointment (United States General Accounting Office 2004). For a conservatorship appointment, a

appointment (United States General Accounting Office 2004). For a conservatorship appointment, a beneficiary’s legal capacity must be distinguished from his or her mental ability (Dudley & Edmonds 2018). Legal capacity embodies individual legal rights to have standing to bring and defend law-suits and enter into/execute legally binding con-tracts. In contrast, mental or cognitive capacity issues in conservatorship matters focus on a per-son’s ability to express personal will and inten-tions.

in conservatorship matters focus on a per-son’s ability to express personal will and inten-tions. Depending on the jurisdiction in question, state law may require conservators to take a beneficiary’s preferences into account when making life-changing decisions about finances and property (Kohn & Blumenthal 2014). Under all state laws, if the circumstances that originally mandated a conservatorship have mate-rially changed, courts are obligated to perform a review to confirm whether the

have mate-rially changed, courts are obligated to perform a review to confirm whether the conservatorship is still required or if another type of protective mea-sure is more appropriate.

### Starting a Conservatorship  When a judge considers whether a conservator-ship appointment is necessary, the court may pro-ceed with the following steps:
1. Hold an evidentiary hearing. 2. Order individuals produce evidence or give testimony (including the proposed beneficiary under review for a conservatorship, health-care treatment providers, family members).
3. Order a medical evaluation or assessment of the proposed beneficiary’s abilities and impairments.

3. Order a medical evaluation or assessment of the proposed beneficiary’s abilities and impairments.
4. Order any appropriate investigation of any pro-posed conservator or other individuals involved in a conservatorship proceeding.
5. Review a certified copy of the transcript or other hearing records of from conservatorship proceedings in other courts.

6. Issue an order authorizing the release of med-ical, financial, criminal, or other relevant infor-mation, including protected health information subject to state and federal privacy laws for records.

### Ending a Conservatorship  There are two ways to end a conservatorship: with a court order or when the beneficiary passes away. When the beneficiary dies, his or her conservator-ship terminates automatically. If a conservator’s assistance is no longer needed because of a sig-nificant change in the beneficiary’s cognitive and/or physical state, the court may decide to formally terminate the conservatorship. Anyone who is interested in the beneficiary’s welfare can petition a court to end a

conservatorship. Anyone who is interested in the beneficiary’s welfare can petition a court to end a conservatorship, includ-ing the conservator, a family member, friend, or the beneficiary himself or herself. Upon this peti-tion, a judge will decide whether a conservator-ship should: (1) continue as is, (2) be modified to limit the conservator’s responsibilities, or (3) end (Uekert et al. 2018). Ultimately, a judge will con-sider what is in the best interest of the beneficiary and only deem a

Ultimately, a judge will con-sider what is in the best interest of the beneficiary and only deem a conservatorship inappropriate when there is enough evidence in the court’s records to show that a “good cause” exists for termination. If a conservator wishes to resign from his or her appointment, a judge must file a resignation request with the court. Before a judge approves a conservator’s resignation request, the judge will appoint another person to serve as conservator (Van Arsdale & Oakes

request, the judge will appoint another person to serve as conservator (Van Arsdale & Oakes 2020).

Constipation  ### Definition  The definition of constipation varies among indi-viduals. To some, it is hard stools; to others, it is large stools; and to many more, it is infrequent stools. Because the word “constipation” has different meanings for different people, it has been difficult to compile data on normal and abnormal patterns in children (Schuster 1984). Webster’s English Dictio-nary reads “a term used to describe the subjective complaint of passage of abnormally delayed or dry,

reads “a term used to describe the subjective complaint of passage of abnormally delayed or dry, hardened feces, often accompanied by straining and/or pain” (Webster’s ninth new collegiate dictio-nary 1986). Guidelines of the North American Soci-ety for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) similarly define constipa-tion as “a delay or difficulty in defecation, present for 2 or more weeks and sufficient to cause significant distress to the patient” (Baker et al. 1999). At

2 or more weeks and sufficient to cause significant distress to the patient” (Baker et al. 1999). At present, the most widely accepted definitions for childhood functional constipation are the Rome III definitions (Hyman et al. 2006 and Rasquin et al. 2006) (12,13). An evidence-based recommendations from ESPGHAN (European Society of Pediatric Gastro-enterology, Hepatology and Nutrition) and NASPGHAN in 2014 defined constipation as fol-lows (Tabbers et al. 2014). In the absence of organic pathology,

in 2014 defined constipation as fol-lows (Tabbers et al. 2014). In the absence of organic pathology, two of the following must occur:

For a child with a developmental age < 4 years 1. 2 defecations per week 2. At least 1 episode of incontinence per week after the acquisition of toileting skills

3. History of excessive stool retention 4. History of painful or hard bowel movements 5. Presence of a large fecal mass in the rectum 6. History of large-diameter stools that may obstruct the toilet Accompanying symptoms may include irrita-bility, decreased appetite, and/or early satiety, which may disappear immediately following pas-sage of a large stool.
For a child with a developmental age ≥ 4 years with insufficient criteria for irritable bowel syndrome

1. 2 defecations in the toilet per week 2. At least 1 episode of fecal incontinence per week 3. History of retentive posturing or excessive volitional stool retention 4. History of painful or hard bowel movements 5. Presence of a large fecal mass in the rectum 6. History of large-diameter stools that may obstruct the toilet One can conclude then that normal stool fre-quency ranges from an average of four per day during the first week of life to two per day at 1 year of age. The normal adult

of four per day during the first week of life to two per day at 1 year of age. The normal adult range of three per day to three per week is attained by 4 years of age. These data reflect the average stool frequency in normal infants and children in industrialized countries, not in developing countries, where the normal diet is rich in fiber and normal stool frequency may be different.

Many experts believe that constipation is the delay in defecation for approximately 2 weeks or difficulty in defecation. The causes of constipa-tion are many and may be organic or nonorganic; medications can be a potential cause. Children with ASDs can have sensory processing abnor-malities and develop stool-withholding behaviors or constipation related to altered pain responses. Even children with ASDs who have daily bowel movements may have retention of stool that is not evident to parents,

ASDs who have daily bowel movements may have retention of stool that is not evident to parents, teachers, or health-care pro-viders (Buie et al. 2010). Estimates suggest that 95% of childhood constipation may be functional, without an underlying physiologic cause, and many children with ASD present with nonorganic toileting prob-lems that may precipitate or play a role in the development of constipation, including absent or delayed acquisition of bowel training (Whiteley 2004) and higher rates

including absent or delayed acquisition of bowel training (Whiteley 2004) and higher rates of problem behaviors related to changes in toileting routine. Fecal reten-tion in ASD may also occur secondary to diffi-culty with sensory stimuli, sensory processing, and motor problems, leading to altered gastroin-testinal motility and defecation physiology (Peeters et al. 2013). It is also possible that ele-vated rates of constipation may be related to the ubiquity of food selectivity in this

that ele-vated rates of constipation may be related to the ubiquity of food selectivity in this population, as the dietary patterns often associated with ASD involve high intake of processed food and lack fiber-containing fruits and vegetables, which pro-vide a natural laxative effect and decrease intesti-nal transit time.

The evaluation of all children who present with constipation should include a thorough medical history and physical examination. Understanding what the family or child means when they use the term “constipation,” the fre-quency of bowel movements, the consistency and size of stool, and the presence or absence of abdominal pain is important. A history of stool-withholding behavior points more toward func-tional causes of constipation. For children with ASDs, the physical examination may not

toward func-tional causes of constipation. For children with ASDs, the physical examination may not iden-tify palpable stool, and a careful rectal exami-nation might not be feasible. Every attempt should be made to examine the rectum, although at times it cannot be accomplished. The rectal examination enables the assessment of stool retention, anal tone, and occult mass, as well as the presence or absence of blood, and helps to reassure the family that the child’s anatomy is normal. A plain

or absence of blood, and helps to reassure the family that the child’s anatomy is normal. A plain radiograph of the abdomen may reveal a rectal fecal mass not palpable on the abdominal examination, but due to conflicting evidence for the accuracy of radiologic diagnosis of constipation, routine radiography is not recommended. Diagnostic clues can help to identify some organic causes of constipation. Hirschsprung’s disease is com-mon in children with ASDs, and a history of delayed passage of

Hirschsprung’s disease is com-mon in children with ASDs, and a history of delayed passage of stool after birth should raise the suspicion of aganglionosis. Anatomic abnormalities such as an anterior displacement of the anus, which is more common in girls than boys, can be diagnosed by careful inspec-tion of the anal area. Drugs added to behavior management for constipation are often benefi-cial. Mineral oil, magnesium hydroxide, lactulose, sorbitol, polyethylene glycol (PEG), or a combination of

oil, magnesium hydroxide, lactulose, sorbitol, polyethylene glycol (PEG), or a combination of lubricant (mineral oil) and laxative is recommended for the daily manage-ment of constipation in children.

Contactin-Associated Protein 2  The gene CNTNAP2 encodes the protein contactin-associated protein-like 2 (recommended UniProt name; also known as Caspr2), a member of the neurexin superfamily, and of a class of genes functioning in the nervous system as cell adhesion molecules and receptors acting at the cell mem-brane (EntrezGene). This gene is less frequently referred to as AUTS15, CDFE, CASPR2, PTHSL1, NRXN4, KIAA0868, and DKFZ-p781D1846 (UniProt; BioGrid).

### Structure  CNTNAP2 is located at chromosome 7q35; the genic region of this gene is quite large, spanning 2.3 MB (Nakabayashi and Scherer 2001). In humans, there is a single established isoform (or version of the gene) consisting of 24 exons. The final protein product is 1,331 amino acids. The protein spans the cell membrane one single time (UniProt). The protein consists, in order, of a signal peptide (a short sequence directing the pro-tein product where to go in the cell), a FA58C domain

peptide (a short sequence directing the pro-tein product where to go in the cell), a FA58C domain (“cell surface-attached carbohydrate-binding domain”), two laminin G domains (common in extracellular proteins), an epidermal growth factor-like domain (also frequently found in extracellular proteins), a fibrinogen C-terminal domain, another laminin G domain, another epi-dermal growth factor-like domain, another lami-nin G domain, a helical transmembrane domain (spanning the membrane between the

another lami-nin G domain, a helical transmembrane domain (spanning the membrane between the inside and outside of the cell), and a cytoplasmic domain (the only portion of the mature protein that is inside the cell). This transmembrane and cytoplasmic end of the protein also contains a putative band 4.1 homologues’ binding motif (common to neurexins as well as syndecans and glycophorin C intracellular C-termini, all of which are cell surface proteins) (SMART; UniProt).

### Function  CNTNAP2 was first described by Poliak, Gollan, Martinez, et al. (1999) and was shown to be a member of the neurexin superfamily that localized within juxtaparanodal regions of myelinated axons and clustering with potassium channels. The juxtaparanode is the region next to the para-node, which is on either side of the node of Ranvier, an unmyelinated (unsheathed) region of the axon that allows for efficient signal conduc-tion. Homologs of CNTNAP2 are found as far back as insects (D.

allows for efficient signal conduc-tion. Homologs of CNTNAP2 are found as far back as insects (D. melanogaster, A. gambiae) and nematodes (C. elegans) (EntrezGene), further implying important neural function. CNTNAP2 was shown to interact with CNTN2 (TAG-1); in the absence of CNTN2, CNTNAP2 failed to localize at juxtaparanodes and potassium chan-nels did not accumulate normally (Traka et al. 2003). The transcription factor FOXP2, itself implicated in language function (EntrezGene), was shown by

The transcription factor FOXP2, itself implicated in language function (EntrezGene), was shown by Vernes, Newbury, Abrahams, et al. (2008) to directly regulate CNTNAP2 expression. CNTNAP2 was also shown to have higher expression in circuits involved in higher cortical function, like language (Abrahams et al. 2007). A recent mouse knockout (an animal in which both copies of a gene have been removed) of CNTNAP2 showed dysfunction in neuronal migration (ectopic neurons occurring in the cor-pus

of CNTNAP2 showed dysfunction in neuronal migration (ectopic neurons occurring in the cor-pus callosum) and reduced numbers of interneurons (Peñagarikano et al. 2011). One study has shown evidence of CNTNAP2 in rat forebrain synapses (Bakkaloglu et al. 2008), but it has not been definitively characterized as a synaptic molecule.

### Pathophysiology  CNTNAP2 has been implicated in several psychi-atric disease phenotypes, including Tourette syn-drome and obsessive-compulsive disorder (Verkerk et al. 2003), but has received particular attention for its possible association with autism. Initially, linkage evidence suggested a language-linked gene on chromosome 7q35 (Alarcon et al. 2002, 2005). A homozygous mutation in CNTNAP2 was associated with a cortical dyspla-sia and focal epilepsy phenotype, resulting in sei-zures,

was associated with a cortical dyspla-sia and focal epilepsy phenotype, resulting in sei-zures, language and social impairments, mental disability, and autistic traits (Strauss et al. 2006). CNTNAP2 was additionally implicated in multi-plex autism families by a linkage peak at 7q35 and showed subsequent significant association with a single DNA base change, or single nucleotide polymorphism (SNP) within the gene in an anal-ysis of parent-affected child trios (Arking et al. 2008). A fine-scale

within the gene in an anal-ysis of parent-affected child trios (Arking et al. 2008). A fine-scale analysis of the 15 mb region (7q34-36) encompassing the implicated 7q35 lan-guage region in 172 parent-autistic child trios reinforced CNTNAP2 as an autism candidate gene; follow-up analysis in 304 separate parent-autistic child trios showed association of a SNP in CNTNAP2 with age at first spoken word, again underscoring a possible connection to language phenotype as suggested by Vernes et al.

word, again underscoring a possible connection to language phenotype as suggested by Vernes et al. (2008). Parallel work in this study showed CNTNAP2 expression very specific to brain circuits established as essential for executive function in humans (Alarcon et al. 2008). Also in 2008, large-scale resequencing of the CNTNAP2 gene in 635 autism cases and 942 unaffected controls showed overrepresentation of rare deleterious (i.e., changing the amino acid in a way that is predicted as harmful)

of rare deleterious (i.e., changing the amino acid in a way that is predicted as harmful) mutations in autistic patients compared with unaffected controls, but not at a statistically significant level. A specific mutation, I869T (the 869th amino acid changed from isoleu-cine to threonine), however, occurred four times in three unrelated families and was not seen in any controls, reaching statistical significance. In each case, it was inherited from an ostensibly unaffected parent, suggesting again

significance. In each case, it was inherited from an ostensibly unaffected parent, suggesting again that idiopathic (nonsyndromic) autism may sometimes involve harmful mutations in multiple neurological genes at once. A 2010 study described two siblings with a deletion spanning CNTNAP2 who showed mental retardation and language delay (Sehested et al. 2010); a separate study described a boy with a complex chromosomal rearrangement (pieces of chromosomes breaking off and rearranging

a boy with a complex chromosomal rearrangement (pieces of chromosomes breaking off and rearranging sponta-neously) disrupting CNTNAP2 who presented with speech delay and ASD (Poot et al. 2010). More recently, a rare, predicted deleterious CNTNAP2 variant was observed when 20 exomes of patients with autism were sequenced (O’Roak et al. 2011), perhaps acting in concert with a FOXP1 mutation in that patient. Finally, a report of a mouse model with both copies of the mouse homolog of CNTNAP2

that patient. Finally, a report of a mouse model with both copies of the mouse homolog of CNTNAP2 knocked out (Peñagarikano et al. 2011) described mice with deficits in the 3 ASD core features, in addition to epileptic seizures (reminiscent of Strauss et al. 2006) and hyperactivity. The evidence in CNTNAP2 to date, as well as the implication of several other neurological genes (e.g., NLGN3, NLGN4 X-linked, SHANK3, NRXN1) involved neuron and synapse structure and development, means that further

X-linked, SHANK3, NRXN1) involved neuron and synapse structure and development, means that further research on CNTNAP2 will undoubtedly continue and, hopefully, better eluci-date its precise role(s) in autism spectrum disorders.

Contingencies of Reinforcement  ### Definition  Contingencies of reinforcement, in their simplest form, are comprised of antecedents (events that occur immediately before a behavior), responses or behaviors, and consequences (events that occur immediately after a behavior). The term con-tingencies refers to the relationship or interre-lationship (Skinner 1969) between these events. Reinforcement refers to consequences that in-crease the probability of the behavior occur-ring again under

refers to consequences that in-crease the probability of the behavior occur-ring again under similar circumstances. Thus, contingencies of reinforcement describe an antecedent-behavior-consequence link in which the consequence increases the likelihood that a behavior will occur again in the presence of an antecedent. Contingencies of reinforcement are a key component in applied behavior analysis (ABA) approaches to the treatment of autism spectrum disorders (ASD). For

hemisphere recruitment, and an increased recruitment of relatively posterior language areas as well as visuospatial areas. Such atypical use of brain resources for solving cognitive and linguistic tasks may be a cause or a consequence of the altered organization and/or the difference in connectivity seen in individuals with ASD. Another factor that may complicate this topic is the heterogeneity seen in the ASD population in general and in their language abilities in particular. Learning about

seen in the ASD population in general and in their language abilities in particular. Learning about the organization, recruitment, and connectivity of cortical language areas in ASD should facilitate researchers as well as clinicians in making informed decisions and plans for language-based intervention in people with ASD.

Pathophysiology The path of physiology of ASD is increasingly complex, perhaps reflecting the intriguing nature of the syndrome itself, with abnormalities found in several brain structures and in neurochemicals on a cellular level in cortical and subcortical structures. Significant cerebral hypo-perfusion (decrease of blood flow within the brain) has been widely reported in individuals with ASD especially in bilateral superior temporal cortices. This decrease in blood flow has been found to be

especially in bilateral superior temporal cortices. This decrease in blood flow has been found to be more prevalent as the age of the child increases. A decrease in blood flow to the temporal lobes has been proven to cause impairments in communication, decreased language development, and auditory processing problems. The decreased blood flow has been hypothesized to be a result of vessels within the brain constricting rather than dilating which can lead to hypoxia and result in cell death. The

the brain constricting rather than dilating which can lead to hypoxia and result in cell death. The constriction of blood vessels has been attributed to inflammation in the cortex of individuals with ASD. Abnormalities have also been reported in neuronal migration in postmortem cases of people with ASD along with abnormal minicolumn pathology, disrupted neuronal development, and glial cell abnormalities. Many of these abnormalities can have a significant impact on the organization of the brain in

Many of these abnormalities can have a significant impact on the organization of the brain in ASD. Abnormalities in neurochemistry can also lead to problems in normal development of the brain. For instance, neurotransmitters like serotonin regulate neurogenesis, synaptogenesis, neuronal removal, and differentiation. Normal high serotonin synthesis and synaptogenesis that takes place in early childhood is not seen in children with ASD. Although high levels of blood serotonin are found in children

is not seen in children with ASD. Although high levels of blood serotonin are found in children with ASD, it seems that they have below normal levels within their brains. It has been proposed that certain binding proteins (Mbd1) that are components of the “methylation-mediated epigenetic gene regulation system” could be an underlying factor in the dysfunctional serotonergic system seen in ASD. Studies show that mice who were missing this gene exhibited autistic like characteristics.

in ASD. Studies show that mice who were missing this gene exhibited autistic like characteristics. Abnormalities in other neurotransmitters, such as the N-Acetyl Aspartate (NAA) and in glutamate were also reported in people with ASD. Together, these pathophysiological factors could play a significant role in causing disruption in the typical functioning of the brain in individuals with ASD.

George M. Anderson Laboratory of Developmental Neurochemistry, Yale Child Study Center, Yale University, New Haven, CT, USA

Synonyms Hydrocortisone Definition Cortisol is a stress hormone secreted into the blood by the adrenal cortex of mammals. Its short-term effects of increasing metabolism, increasing blood sugar, and decreasing inflammation help the organism respond to stress and maintain homeostasis. Long-term elevations in cortisol can have a number of detrimental effects on the body and, perhaps, on the brain. Cortisol secretion by the adrenal is controlled by adrenocorticotropic hormone (ACTH) secreted by the

secretion by the adrenal is controlled by adrenocorticotropic hormone (ACTH) secreted by the pituitary, with ACTH secretion in turn controlled by corticotrophin-releasing hormone (CRH) secreted by the hypothalamus. Cortisol exerts its peripheral and central effects by binding to the glucocorticoid receptor (GCR) found on most cells. Cortisol has been measured in the plasma, serum and urine of individuals with autism in order to assess their exposure to and response to stress, and their level of

with autism in order to assess their exposure to and response to stress, and their level of arousal. When taken together, prior studies appear to indicate that cortisol production is similar in individuals with autism compared to controls. However, there is some evidence that the normal diurnal rhythm of cortisol secretion (highest in the morning, lowest at night) might be altered in some individuals with autism.

Rachel Loftin1, Alexander Westphal2 and Laurie A. Sperry3 1AARTS Center, Rush University Medical Center, Chicago, IL, USA 2Division of Law and Psychiatry, Yale Child Study Center, Yale School of Medicine, New Haven, CT, USA
3Department of Psychiatry, School of Medicine, Yale University, New Haven, CT, USA

Definition The term “counterfeit deviance” is used to describe inappropriate behavior rooted in factors other than true deviance. It is most often used in the context of inappropriate sexual behavior, in which the observed behavior looks paraphilic but, upon closer examination, was the result of other factors. Counterfeit deviance has been the focus of more discussion in the intellectual disability literature than in the autism-specific literature. There are clinical examples of its occurrence

literature than in the autism-specific literature. There are clinical examples of its occurrence even among people with ASD who have adequate intellectual ability. Traits associated with autism spectrum disorder (ASD) – including but not limited to difficulty taking another person’s perspective, social naiveté, preoccupation with particular areas of interest, differences in sensory perception – may make this population prone to situations that cause counterfeit deviance, particularly when the

may make this population prone to situations that cause counterfeit deviance, particularly when the behavior of the person with ASD is assessed by someone unfamiliar with these traits. While one should always consider whether an observed behavior is merely counterfeit deviance, it is possible for a person with ASD to display a real deviant sexual interest or drive. One clear example of counterfeit deviance is an 18-year-old young man with ASD and intellectual disability who was arrested for

deviance is an 18-year-old young man with ASD and intellectual disability who was arrested for indecent exposure. He was taught at school that masturbation was something that he should do only at home. One day at home he masturbated in his backyard. The boy was spotted by a neighbor who called the police. When later asked why he masturbated outside, the boy said he thought it was allowed because he was “at home.” He was not aware that it would be problematic for anyone to see him. Counterfeit

he was “at home.” He was not aware that it would be problematic for anyone to see him. Counterfeit deviance occurred when he was viewed masturbating outside and assumed to be engaging in this behavior as a public display (i.e., exhibitionism).

Patricia Howlin Institute of Psychiatry, Psychology and Neuroscience, King’s College, London, UK Synonyms Adult follow-up studies; Adulthood, transition to; Factors affecting outcome; Natural history; Outcome; Outcome studies

Definition Autism is a lifelong disorder characterized by core problems in social communication and the presence of stereotyped and repetitive behaviors. However, the manifestation of these problems can change over time. In many cases, the severity of autistic symptoms decreases with age; in others, difficulties may become more evident as individuals grow older. In adolescence and adulthood, many individuals also develop additional mental health problems, particularly related to anxiety and

individuals also develop additional mental health problems, particularly related to anxiety and depression. The course of development is highly variable and often very difficult to predict. The most positive outcomes tend to be for individuals who develop useful speech in childhood and have an IQ in the normal range (i.e., 70+). Nevertheless, even among this group, some individuals remain highly dependent as adults. A good outcome also depends on the adequacy of intervention and support

highly dependent as adults. A good outcome also depends on the adequacy of intervention and support available during child- and adulthood.

Abigail L. Hogan1, Hayley Crawford2 and Jane Roberts1 1Department of Psychology, University of South Carolina, Columbia, SC, USA 2Coventry University, Coventry, UK Definition Social avoidance includes failure to initiate interactions, reduced time spent interacting with others, and social interaction restricted to a subset of preferred individuals. Elevated social avoidance is often associated with negative outcomes including reduced relationship quality and educational/vocational difficulties.

negative outcomes including reduced relationship quality and educational/vocational difficulties. High levels of social avoidance are commonly observed in individuals with autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), and anxiety.

Fragile X syndrome (FXS) is a monogenic disorder associated with ASD. In males with FXS, social avoidance emerges in infancy, increases through early childhood, and stabilizes at a high level across adolescence and adulthood. Increased social avoidance across infancy and preschool predicts more severe ASD symptoms but reduced ADHD and anxiety symptoms in children with FXS.

Autism is a lifelong disorder characterized by core problems in social communication and the presence of stereotyped and repetitive behaviors. However, the manifestation of these problems can change over time. In many cases, the severity of autistic symptoms decreases with age; in others, difficulties may become more evident as individuals grow older. In adolescence and adulthood, many individuals also develop additional mental health problems, particularly related to anxiety and depression. The

also develop additional mental health problems, particularly related to anxiety and depression. The course of development is highly variable and often very difficult to predict. The most positive outcomes tend to be for individuals who develop useful speech in childhood and have an IQ in the normal range (i.e., 70+). Nevertheless, even among this group, some individuals remain highly dependent as adults. A good outcome also depends on the adequacy of intervention and support available during

as adults. A good outcome also depends on the adequacy of intervention and support available during child- and adulthood.

John W. Thomas Independent Educational Consultant, Durham, NC, USA Quinnipiac University School of Law, Hamden, CT, USA Definition Court decisions involving ASD occur in a number of legal contexts. Perhaps the most common decisions address the issue of insurance coverage for the treatment of ASD. In the private insurance context, the dispute often centers on coverage of behavioral therapies (Barner 2009). Insurers contend that these treatments are experimental or are educational services

(Barner 2009). Insurers contend that these treatments are experimental or are educational services rather than health services. Court decisions turn on both the specific language of the policy at issue and the mandates of state laws (Barner 2009). Court decisions often also address the extent to which early intervention, custodial services, and other treatment modalities are covered by specific insurance policies. Public health insurance also presents issues of ASD treatment coverage. Decisions

policies. Public health insurance also presents issues of ASD treatment coverage. Decisions regarding eligibility for coverage in Medicaid and other governmental programs often depend on whether a given intervention is classified as a mental health treatment, physical health treatment, or a neurodevelopmental therapy (Treatment 2009).

The educational setting provides another major context for court decisions regarding ASD. Litigation in this area often concerns the mandates of the federal Individuals with Disabilities Education Act (IDEA). IDEA’s goal is “to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education.” The statute also mandates the provision of “related services designed to meet their unique needs and prepare them for further

the provision of “related services designed to meet their unique needs and prepare them for further education, employment, and independent living.” Services must be articulated in an Individualized Education Program (IEP). Litigation and resulting judicial decisions depend on a court’s conclusion whether the process provided the student and the IEP itself in accord with the United States Supreme Court’s decision in Board of Education v. Rowley. There, the Court held that the student must be

Court’s decision in Board of Education v. Rowley. There, the Court held that the student must be provided with a fair process and that the IEP must be “reasonably calculated to enable the child to receive educational benefits.”

ASD also plays a role in civil litigation between private parties, including the tort litigation contending that the MMR vaccine causes ASD (Thomas 2010). These cases, now totaling nearly 6,000, are being prosecuted under the National Vaccine Injury Compensation Program (Thomas). Individuals claiming an injury from a covered vaccine must file a claim for “no-fault” compensation with the US Court of Federal Claims. The claims are resolved not by juries but by special masters. To date, the special

Federal Claims. The claims are resolved not by juries but by special masters. To date, the special masters have ruled against the plaintiffs on all six test cases, and all of those decisions appealed to higher courts have been affirmed. The Court of Claims has awarded compensation where the complaining child suffered from a preexisting mitochondrial enzyme deficit (Offit 2008). On February 22, 2011, the United States Supreme Court ruled that the National Childhood Vaccine Injury Act (NCVIA)

2011, the United States Supreme Court ruled that the National Childhood Vaccine Injury Act (NCVIA) prohibits complainants from filing lawsuits against vaccine manufacturers. Rather, all such claims must be filed with the special Federal Court of Claims established under the National Vaccine Injury Compensation Program (Bruesewitz).

Ismail El Hailouch School of Public Health, Child Study Center, Yale University School of Medicine, New Haven, CT, USA

Description of COVID-19 Coronaviruses (CoVs) are a group of diverse, enveloped, positive-sense, sing-stranded RNA viruses belonging to the subfamily Ortho-coronavirinae in the family Coronaviridae, Order Nidovirales (Li et al. 2020). CoVs are known to cause disease in humans and animals, and can affect nervous, respiratory, hepatic, and enteric systems. In December 2019, patients in Wuhan, China, presented with pneumonia of unknown cause. It was determined after genome sequencing that the

presented with pneumonia of unknown cause. It was determined after genome sequencing that the pneumonia – termed coronavirus disease 2019 (COVID-19) – was caused by a novel CoV, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) (Xu et al. 2020). Symptoms of the disease include mild to moderate respiratory illness, fever, and loss of smell.

Current Knowledge State of Emergency On January 20, 2020, the WHO declared COVID-19 a public health emergency, and eventually declared it a pandemic on March 11, 2020 (Dhama et al. 2020). This marked the first pandemic since the 2009 outbreak of H1N1. Initially, the majority of the public health burden associated with COVID-19 was confined mostly to China. However, the disease quickly spread to Europe and the United States of America (USA). The European countries that were affected most severely

and the United States of America (USA). The European countries that were affected most severely are Italy and Spain, but the USA has the largest number of confirmed cases and deaths due to COVID-19. The COVID-19 pandemic has resulted in stringent lockdown measures being implemented worldwide, and has caused severe economic losses due to sudden disruptions in production and trade. Unfortunately, most of the governmental measures implemented worldwide have been reactive rather than proactive, and

of the governmental measures implemented worldwide have been reactive rather than proactive, and were not implemented early enough to minimize societal disruptions.

COVID-19 Effects on Mental Health Many governments worldwide have adopted similar measures to combat COVID-19. These measures typically involve some level of lockdown, wearing masks, quarantining if necessary, and limiting social gatherings. While these measures have proven effective at slowing the spread of COVID-19, they have had a particularly negative impact on regional and global economies (Adhikari et al. 2019). Additionally, these stringent public health measures have caused adverse

(Adhikari et al. 2019). Additionally, these stringent public health measures have caused adverse psychological impacts on the general population. Studies show that negative psychological effects of the COVID-19 pandemic result from the unpredictability, uncertainty, misinformation, and social isolation surrounding the situation (Zandifar and Badrfam 2020). Vulnerable populations are especially at risk of developing adverse psychological symptoms due to the increased level of stress and panic

at risk of developing adverse psychological symptoms due to the increased level of stress and panic caused by the possibility of developing complications if affected by COVID-19. The increased level of fear and panic among the general population can be highlighted by certain behaviors such as stockpiling household supplies and behaving violently toward those not following public health guidelines (Shigemura et al. 2020). Many have hypothesized that the COVID-19 pandemic may lead to a global

(Shigemura et al. 2020). Many have hypothesized that the COVID-19 pandemic may lead to a global mental health crisis which would require large-scale psychological interventions and lasting reform of mental health care (Dong and Bouey 2020). Western countries have already begun to address mental health treatment in more recent protocols to combat COVID-19. However, countries such as China have yet to implement psychological interventions to reduce the mental health burden on not only affected

to implement psychological interventions to reduce the mental health burden on not only affected individuals, but the general population.

COVID-19 Disruptions in the ASD Community Those with autism spectrum disorder (ASD) – whether they be high-functioning individuals with Asperger’s syndrome or low-functioning individuals with severely debilitating autism – generally display a preference for specific daily routines (Fuld 2018). Any deviation from their daily routine may result in moderate to severe feelings of anxiety and stress. While governments worldwide have rightly implemented stringent lockdown measures, people with ASD

While governments worldwide have rightly implemented stringent lockdown measures, people with ASD have largely been forgotten. Lockdown, virtual learning, and wearing masks outdoors have resulted in severe disruptions in the lives of those with ASD. Government officials have rarely addressed this significant, vulnerable population in public health protocols. Some countries worldwide, such as the United Kingdom (UK), have relaxed public health protocols for those with ASD (Patel et al. 2020).

United Kingdom (UK), have relaxed public health protocols for those with ASD (Patel et al. 2020). However, these accommodations only came following legal challenges with the ASD community. The COVID-19 pandemic poses a significant and continuous source of distress for those with ASD. The uncertainty surrounding the pandemic, as well as the continuous stream of new information regarding COVID-19, may worsen the mental health of those with ASD, even if they do not have an existing mental health

may worsen the mental health of those with ASD, even if they do not have an existing mental health comorbidity. One of the most significant sources of psychological stress for those with ASD is the sudden change in routine following the implementation of public health measures (Patel et al. 2020). Caregivers were often unable to provide warning of the impending changes in lifestyle, which likely exacerbated the feelings of psychological distress in those with ASD. Individuals with ASD often meet

the feelings of psychological distress in those with ASD. Individuals with ASD often meet with healthcare providers on a regular basis for check-ins and therapy. Additionally, many attend special education schools where they are engaged in various therapeutic educational programming. Due to COVID-19, there are many concerns as to whether such individuals can continue receiving these important services and treatment. A significant portion of schools in the USA and abroad have adjusted their

services and treatment. A significant portion of schools in the USA and abroad have adjusted their curricula to include some form of virtual learning. This is also the case for special education schools serving students with ASD. Adjusting to an at-home virtual learning environment provides significant challenges for individuals with ASD who already struggle with maintaining attention and completing tasks in-person (Patel et al. 2020). Without the in-person instruction of specialized educators,

tasks in-person (Patel et al. 2020). Without the in-person instruction of specialized educators, the parents must play a larger role in the educational process, posing additional strains on the family of individuals with ASD. Another important factor to consider is physical activity, as the social distancing parameters have caused many to live a sedentary lifestyle (Erkan and Oğuz Kaan 2020). Individuals with ASD often require some form of physical activity throughout the day, and governments

with ASD often require some form of physical activity throughout the day, and governments have often loosened the outdoor public health protocols for those with ASD due to these requirements. Various physical activities that can be done at home have been outlined by researchers and highlight the importance of family participation (Erkan and Oğuz Kaan 2020).

Advice to Help Individuals with ASD to Cope with the COVID-19 Pandemic Several studies and reviews have been published on methods to help individuals with ASD cope with the disruption the COVID-19 pandemic has caused. One way to assist those with ASD in coping with the disruptions is to structure their day around various activities using a blackboard or some sort of chart (Narzisi 2020). The pandemic will require families with children who have ASD to find new activities for play, and to

pandemic will require families with children who have ASD to find new activities for play, and to schedule these activities at specific times throughout the day. Lego therapy and various video/computer games have also been possible suggestions; however, it is important for parents to find out what works best for their own children (Narzisi 2020). Ordering these activities into a daily schedule will help to minimize any resistance or distress surrounding the changes. Another important aspect to

help to minimize any resistance or distress surrounding the changes. Another important aspect to consider is how the current pandemic disrupts education for individuals with ASD. Since many academies and schools have now moved to an online platform, students with ASD will need to make quite an adjustment. One case study of five families with individuals who have ASD in the Philippines reported significant struggles with adjusting to online schooling (Cahapay 2020). Parents reported the importance

struggles with adjusting to online schooling (Cahapay 2020). Parents reported the importance of communicating to their children the realities of the current pandemic and its impact on daily life (Cahapay 2020). One parent accomplished this by driving their child around the city so that they could see how businesses were closed down, and also tried to teach their child new social behaviors such as wearing a mask (Cahapay 2020). It is important to communicate to individuals with ASD the realities

wearing a mask (Cahapay 2020). It is important to communicate to individuals with ASD the realities of this pandemic, and furthermore work with families to teach these individuals new social skills that will help them cope with the extended period of time spent at home.

Future Directions The COVID-19 pandemic has caused significant worldwide disruptions in nearly every facet of daily life. One population that has been forgotten in the midst of new government regulations and public health protocols is the ASD community. Individuals with ASD typically require a specific daily schedule, any deviation from which may result in significant anxiety and distress. Additionally, individuals with ASD are typically involved in some sort of therapy, social work, or special

individuals with ASD are typically involved in some sort of therapy, social work, or special education. Many of these social services are being moved online, which may pose a significant challenge for individuals with ASD. It is imperative that government officials keep the ASD community in mind when deciding on new public health protocols, and that teachers and parents continue to work together to minimize the disruptions caused by this pandemic on the ASD community.

Adam Feinstein Autism Cymru and Looking Up, London, UK Major Appointments (Institution, Location, Dates) *   Mildred Creak worked as assistant physician at The Retreat, a mental hospital run by Quakers in York, UK, 1924–1928.
*   Took up a post at the Maudsley Psychiatric Hospital, London, 1929. *   Appointed physician in psychological medicine at the Hospital for Sick Children, Great Ormond Street, London, 1946–1963.

Landmark Clinical, Scientific, and Professional Contributions In the early 1960s, Mildred Creak chaired the working party which established the landmark nine-point criteria for the diagnosis of autism, published in 1961. This work was based on a series of 100 children she had collected herself. Creak suggested that autism, far from being caused by parental inadequacies, was primarily due to genetic – or, as she put it, “constitutional” – factors.

Short Biography Born in Manchester, UK, in 1898, Mildred Creak was an extraordinary figure in the history of child psychiatry. She qualified as a doctor at University College Hospital in London at the end of the First World War. It was at the Children’s Department of London’s Maudsley Psychiatric Hospital, from 1929, that Creak helped to lay the clinical and academic foundations for what is now one of Britain’s leading centers for the study of child psychiatric disorders. During the Second World

of Britain’s leading centers for the study of child psychiatric disorders. During the Second World War, she joined the Women’s Army Corps as a doctor, serving part of her time in India. From 1946 – when she joined the Hospital for Sick Children in London’s Great Ormond Street – until her retirement in 1963, she played a leading role in establishing the practice of child psychiatry in a pediatric setting. After her retirement, Creak lectured in Perth, Western Australia, and had a unit for

setting. After her retirement, Creak lectured in Perth, Western Australia, and had a unit for autistic children named after her there. She died in the UK in 1993 at the age of 95.

Alexandra M. Slaughter1, Sascha Hein2, Sarah S. Mire1 and Elena L. Grigorenko1,3 1University of Houston, Houston, TX, USA 2Freie Universität Berlin, Berlin, Germany 3Yale Child Study Center, Psychology, and Epidemiology and Public Health, Yale University, New Haven, CT, USA

Objectives Understanding criminal behavior in juvenile justice-involved youth with autism spectrum disorders (ASD), potential factors associated with involvement in the juvenile justice system (JJS), and experiences of interacting with law enforcement.

ASD and Crime in the Media In the past decade, the mass media has often inaccurately linked ASD with criminal behavior. For example, perpetrators, including Lauri Love and Gary McKinnon, who hacked into US computer systems, and Adam Lanza, the 2012 Sandy Hook School shooter, were reportedly diagnosed with mild forms of ASD (Holden and Shirbon 2018; Kushner 2011; McCoy 2014). Furthermore, media claimed that Christopher Harper-Mercer, who was the perpetrator in the Oregon community college

claimed that Christopher Harper-Mercer, who was the perpetrator in the Oregon community college shooting, and Dylann Roof, the perpetrator in the 2017 Charleston church shooting, also had ASD (Calabresse et al. 2015; Tripp 2017). Even more recently, the media has suggested that Nikolas Cruz, the individual who opened fire at a school in Parkland, Florida, was diagnosed with ASD (Dearen et al. 2018). The mass media typically links ASD to criminality with captivating headlines such as FLORIDA

2018). The mass media typically links ASD to criminality with captivating headlines such as FLORIDA SCHOOL SHOOTING: Nikolas Cruz was diagnosed with autism, ADHD; Students rage against politicians, NRA in anti-gun rally (Dearen et al. 2018) which not only stigmatizes mental health in general but specifically links ASD to criminal behavior, which leads to negative reactions from the public and stigmatizations of the ASD community (Brewer et al. 2017). In fact, ASD advocates have begun to release

of the ASD community (Brewer et al. 2017). In fact, ASD advocates have begun to release statements cautioning against connecting ASD to school shootings (Diament 2018). Moreover, the way in which the mass media links ASD to criminal behavior is problematic methodologically because the media focuses on high-profile, extreme cases which occur rarely within the general population. Furthermore, extensive reviews of the literature have not revealed a direct link between ASD and criminal behavior,

reviews of the literature have not revealed a direct link between ASD and criminal behavior, including violent criminal activity (Bjørkly 2009; Lerner et al. 2012). Finally, media reports can be misleading because these report do not provide evidence of a formal ASD diagnosis of the perpetrator (Brewer et al. 2017; Maras et al. 2015). Nevertheless, the attention that the ASD community has received in the mass media has led many researchers to turn their attention to understanding criminal

in the mass media has led many researchers to turn their attention to understanding criminal behavior among persons, including youth, with ASD.

Youth with ASD in the JJS Prevalence Rates ASD prevalence in the general population is 1.7% (Baio et al. 2018) but reports of prevalence rates of JJS involvement among youth with ASD vary widely within the United States (US). The lowest rate of first juvenile court involvement among youth with ASD (i.e., first contact with the JJS) was estimated at 0.02% (Kincaid and Sullivan 2019), which is consistent with another study that revealed the rates of youth with ASD in the JJS in Connecticut between

with another study that revealed the rates of youth with ASD in the JJS in Connecticut between 2006 and 2012 to be 0.04% (Slaughter et al. 2019). However, other studies have reported higher rates of JJS involvement. For example, one study recorded the rate of arrest among youth with ASD to be 4.7% (Rava et al. 2017), and another showed the percentage of youth with ASD who were charged with a crime to be 5% (Cheely et al. 2012). Among studies conducted outside of the United States,

with a crime to be 5% (Cheely et al. 2012). Among studies conducted outside of the United States, inconsistencies in prevalence rates are also present. Specifically, research in Japan reported ASD prevalence rates ranged from 1.3% to 6.7% across all, but traffic violations and car accidents, charges in three family courts (Kumagami and Matsuura 2009). However, when a specialty family court for sex-related crimes or arson was considered, the prevalence rate was 18.6%. Inconsistencies in these

sex-related crimes or arson was considered, the prevalence rate was 18.6%. Inconsistencies in these estimates may be related to methodological differences (e.g., samples, statistical approaches), yet it is clear that youth with ASD do come into contact with the JJS.

Types of Crimes The types of crimes committed by youth with ASD vary, with some studies showing a higher likelihood for these youth of committing crimes against persons compared to youth who did not have a disability (Cheely et al. 2012; Kincaid and Sullivan 2019). Specifically, law enforcers frequently respond to calls related to verbal and physical aggression directed at others, such as family members (Tint et al. 2017). However, other research suggests that youth with ASD are no more likely

members (Tint et al. 2017). However, other research suggests that youth with ASD are no more likely to commit crimes against person than youth without special educational needs (Slaughter et al. 2019). Special attention has also been paid to sex-related offenses, as one study presented higher rates of sex-related crimes among youth with ASD compared to the general population referred to family courts in Japan (Kumagami and Matsuura 2009). However, when researchers explored sexual offending

courts in Japan (Kumagami and Matsuura 2009). However, when researchers explored sexual offending among individuals with ASD as a follow-up to their original report, there was inconclusive support for the assumption that individuals with ASD commit sex-related offenses (Allely and Creaby-Attwood 2016). With these equivocal findings, it remains unclear as to whether youth with ASD are in fact more likely to commit sex-related offenses. Studies of property offenses also generated mixed results.

likely to commit sex-related offenses. Studies of property offenses also generated mixed results. Research shows that youth with ASD are less likely to commit property crimes when compared to youth without a disability (Cheely et al. 2012; Slaughter et al. 2019). This may suggest youth with ASD are less likely to be involved with crimes requiring premeditation when compared to their nondisabled peers. However, this assumption is brought into question with more recent research suggesting that

peers. However, this assumption is brought into question with more recent research suggesting that youth with ASD were more likely to commit property crimes compared to youth without disabilities (Kincaid and Sullivan 2019). It is possible that property crimes are committed by youth with ASD who are behaviorally or emotionally dysregulated, as the likelihood of property damage does tend to increase under such circumstances (Hodgetts et al. 2013). In these instances, youth with ASD likely would

under such circumstances (Hodgetts et al. 2013). In these instances, youth with ASD likely would not have premeditated an offense but could have been arrested for property destruction nonetheless. However, more research is needed to determine intentionality in committing such crimes. Finally, with regard to recidivism, youth with ASD are not more likely than youth without special educational needs to reoffend (Slaughter et al. 2019), although studies examining recidivism in youth with ASD are

to reoffend (Slaughter et al. 2019), although studies examining recidivism in youth with ASD are scarce. In fact, to our knowledge there have been no other studies that have looked at recidivism rates among youth with ASD. This is surprising since recidivism is a key post-release outcome considered in criminal justice research, and ASD-related work is needed in this area.

A Comparison with Adult Offenders with ASD Given the shortage in research examining recidivism as well as longitudinal studies of criminal behavior, research on adults with ASD may shed some light as to whether criminal behavior patterns remain consistent over time. A recent literature review examining studies using both criminal records and self-report data revealed that the prevalence of offending behavior among adults with ASD varied across studies ranging from 8% to 26% (Rutten et al.

behavior among adults with ASD varied across studies ranging from 8% to 26% (Rutten et al. 2017). One study found that the most common convictions (81%) among adults with ASD were for property offenses (Hippler et al. 2010), though other researchers have concluded property crimes were less prevalent among adults with ASD (Rutten et al. 2017). It also appears that adults with ASD may be less likely to commit traffic offenses, and they report taking illicit drugs at lower rates than adults without

to commit traffic offenses, and they report taking illicit drugs at lower rates than adults without ASD (Mouridsen et al. 2008; Woodbury-Smith et al. 2006). With regard to violent crimes or crimes against persons, available research suggests that these crimes are rare in populations of adults with ASD (Bjørkly 2009; Hippler et al. 2010). However, when these crimes do occur, their common triggers include sensory hypersensitivity, tactile hypersensitivity, and misinterpretation (Bjørkly 2009).

include sensory hypersensitivity, tactile hypersensitivity, and misinterpretation (Bjørkly 2009). Therefore, it may be informative for future research to attempt to understand offending behavior among those with ASD, especially with regard to crimes against persons, in the context of the disorder. Taken together, prevalence rates for involvement with the justice system may slightly increase in adulthood when compared to adolescence. There also continues to be some debate as to whether

in adulthood when compared to adolescence. There also continues to be some debate as to whether individuals with ASD commit property crimes at higher rates than those without ASD. Furthermore, crimes against persons continue to be prevalent in adulthood, although violent crimes are rare. However, longitudinal research is needed in order to better explore these patterns.

Associated Factors of JJS Involvement School Discipline There are several factors that are associated with JJS involvement among youth with ASD. School discipline is one factor that is important to consider as recent research has discovered that school discipline and JJS involvement often co-occur among youth with ASD (Slaughter et al. 2019; Turcotte et al. 2018). Based on teacher reports, some research shows that youth with ASD are 2.5 times more likely to be suspended when compared to youth

research shows that youth with ASD are 2.5 times more likely to be suspended when compared to youth without disabilities (Ambler et al. 2015). However, other studies suggest they may be less likely to receive such disciplinary actions compared to students who do not have a disability and students with other disabilities, such as emotional disturbance and learning disabilities (Miller and Meyers 2015; Slaughter et al. 2019). Nevertheless, about half of youth with ASD who have come into contact

2015; Slaughter et al. 2019). Nevertheless, about half of youth with ASD who have come into contact with the JJS have received at least one out-of-school suspension (Slaughter et al. 2019). Additionally, youth with ASD who have come into contact with the police are more than four times as likely to also have school discipline infractions (Turcotte et al. 2018). Therefore, youth with ASD who are excluded from the supportive environment of the school system through suspensions and expulsions may

from the supportive environment of the school system through suspensions and expulsions may be at higher risk of coming into contact with the JJS.

Externalizing Behaviors Additionally, fighting at school that results in a disciplinary referral is associated with reoffending and may serve as a warning sign that youth with ASD are at risk for future JJS involvement (Slaughter et al. 2019). This is supported by other research showing that externalizing behaviors in youth with ASD such as aggression is associated with being stopped, questioned, and arrested by law enforcers (Rava et al. 2017; Tint et al. 2017). Finally, compared to youth whom

and arrested by law enforcers (Rava et al. 2017; Tint et al. 2017). Finally, compared to youth whom do not have a disability, youth with ASD are also more likely to be charged for school-based incidents such as disturbing the school, carrying a weapon, assault and battery, or threatening a school employee (Cheely et al. 2012). For these reasons, both externalizing behavior and school discipline may increase the odds of having interactions with law enforcement among youth with ASD.

ASD and Law Enforcement Interaction with Law Enforcers Law enforcers may encounter youth with ASD in a variety of situations. Many youth with ASD (i.e., about 49%) elope from the home, and therefore law enforcement may be called when the youth with ASD is lost (Anderson et al. 2012). Officers may also be called when caregivers or teachers cannot manage behaviors like aggression, tantrums, and self-injury (Jang et al. 2011; Matson and Nebel-Schwalm 2007; Tint et al. 2017). Aggressive behaviors

(Jang et al. 2011; Matson and Nebel-Schwalm 2007; Tint et al. 2017). Aggressive behaviors are often a primary presenting concern for contacting law enforcers. Finally, youth with ASD may encounter law enforcement in more communal spaces. Interactions with law enforcement may be extremely difficult for youth with ASD. Specifically, core characteristics of ASD such as difficulties with social interactions, atypical responses to sensory stimuli, and exhibiting restrictive interests and repetitive

atypical responses to sensory stimuli, and exhibiting restrictive interests and repetitive behaviors will affect how persons with the diagnosis interact with law enforcers. Law enforcers who are not aware that the youth has been diagnosed with ASD may misinterpret certain behaviors associated with the diagnosis (e.g., not responding to verbal commands, lack of eye contact, repetitive behaviors) as threatening, suspicious, non-compliant, or signaling that the youth is under the influence of drugs

threatening, suspicious, non-compliant, or signaling that the youth is under the influence of drugs or alcohol when these behaviors are merely manifestations of the diagnosis (Teagardin et al. 2012). Additional challenges are present when the youth with ASD is nonverbal and cannot communicate to the law enforcers that they are diagnosed with ASD. Moreover, ASD is often considered a hidden disability, as there are not outward indications of the diagnosis. When law enforcers are not trained to

as there are not outward indications of the diagnosis. When law enforcers are not trained to recognize certain characteristics of ASD and respond appropriately, they may unintentionally exacerbate the situation, which may result in trauma, injury, or even fatality (Copenhaver and Tewksbury 2019; Teagardin et al. 2012).

Training Programs for Law Enforcers There is a growing demand for high-quality training services for law enforcers. For example, one study conducted in England and Wales revealed that only about one-third of police officers reported having received ASD-specific training; and refresher courses are rare (Crane et al. 2016). The number of officers who receive ASD-specific training in the United States is less clear. In general, police officers in England and Wales find ASD-specific trainings to be

is less clear. In general, police officers in England and Wales find ASD-specific trainings to be helpful. However, some are dissatisfied with the training because they felt trainings did not focus on ASD in the context of the justice system, were oversimplified, and lacked practical application as well as relevance to their policing role (Crane et al. 2016). Police officers who have not received police training overwhelmingly report that training would be useful. Work in this area has revealed that

training overwhelmingly report that training would be useful. Work in this area has revealed that police officers would like to receive more information on enhancing communication, minimizing distress, and specific training for interaction with someone with ASD as it relates to their specific policing role (Crane et al. 2016). This research highlights the need for high-quality training programs that focus on both education and practical utility.

Future Directions A brief review of the current literature regarding JJS involvement among youth with ASD reveals that much additional work is needed to address both gaps and inconsistencies. This is apparent with regard to the aforementioned equivocal findings such as inconsistencies with regard to prevalence rates, types of crimes, and satisfaction of interactions with law enforcers. Additionally, several limitations exist within the current literature. For one, many studies have been

several limitations exist within the current literature. For one, many studies have been cross-sectional in nature, which highlights the need to study criminal behavior in this population over time. In addition, how ASD was diagnosed (e.g., educational classification, psychological diagnoses) in participants varies across studies, which makes it difficult to draw reliable conclusions. Moreover, few research studies focus on mental health comorbidities and other environmental factors that may

few research studies focus on mental health comorbidities and other environmental factors that may increase the risk for JJS involvement (e.g., family factors). This is especially surprising given that many youth with ASD have comorbid medical and psychological diagnoses. There has also been a lack of self-report data collected within this population. Given the limitations of official crime data, which is subject to police and the court’s discretion, self-report data (e.g., surveys, qualitative

which is subject to police and the court’s discretion, self-report data (e.g., surveys, qualitative interviews) may, in some cases, provide critical and useful information. Therefore, there are many opportunities for researchers to contribute to the current literature base.

Furthermore, there is a need for more research in the areas of criminal behavior (i.e., types of crime and recidivism), experiences of interactions with law enforcement and the JJS more broadly, as well as factors that may lead to involvement in the JJS (e.g., school discipline, mental health comorbidities, specific ASD traits that increase risk of involvement in the JJS, and social factors). There appears to be a connection between school discipline and contact with not only law enforcers but

appears to be a connection between school discipline and contact with not only law enforcers but also the JJS more broadly. Specifically, more research is needed examining fighting behavior in school. Additional research should also be conducted with youth who have ASD, particularly among those who have been suspended or expelled from the school system. A high number of youth with ASD who have come into contact with the JJS have been suspended from school. Recidivism rates are important to

come into contact with the JJS have been suspended from school. Recidivism rates are important to examine because youth, in general, who have come into contact with the JJS are at an increased risk of coming into contact with the JJS in the future. In theory, youth with ASD are also subject to the increase in risk of coming into contact with the JJS after their first offense. Reasons for how and why youth with ASD recidivate would also be important to explore.

Additionally, many youth in the general population who come into contact with the JJS have mental health comorbidities as well as other environmental factors that increase their risk of involvement with the JJS. However, surprisingly, the research to date has not studied these factors in relation to JJS involvement in youth with ASD. This is especially surprising given medical and psychological comorbidities are very common among youth with ASD (Lai et al. 2013). Researchers can also use

comorbidities are very common among youth with ASD (Lai et al. 2013). Researchers can also use self-report data to understand experiences of police interactions and JJS involvement from youth with ASD. In trying to understand experiences of the JJS, it is important for researchers to study the school environment (e.g., school discipline, arrests on campus, special education services), the crime itself (e.g., triggers), and the experience of interacting with police officers as well as detention

itself (e.g., triggers), and the experience of interacting with police officers as well as detention staff and juvenile probation officers (e.g., what could have gone better or worse). With regard to rehabilitation, it is also important to examine intent, competency, and remorse.

It also is important to continue to interview law enforcers in order to determine what training they have received and where this training falls short. Current research suggests that specific training topics should include characteristics of the disorder to be aware of as well as effective ways to identify an ASD diagnosis to law enforcement. Special attention should be paid to how these training programs can incorporate practical skills. Practical skills can be developed via both role-plays and

can incorporate practical skills. Practical skills can be developed via both role-plays and interacting with the ASD community. Moreover, there is a need to develop training programs for youth with ASD and their families so that they are better prepared when they encounter first responders, including law enforcers. Specific topics should include information on how to interact with law enforcers, as well as effective ways to identify an ASD diagnosis to law enforcement. At a broader level, it

as well as effective ways to identify an ASD diagnosis to law enforcement. At a broader level, it appears that aggression is a primary concern for contacting first responders at school, home, and in the community. This highlights the need to develop community-based family support (Tint et al. 2017), as well as support for school personnel so that these behaviors do not escalate to the point that law enforcers must be contacted. It would also be helpful for advocacy groups to create on-hand

law enforcers must be contacted. It would also be helpful for advocacy groups to create on-hand resources that can be used by first responders in order to become more familiar with ASD in general. To date, there are some online and print resources for first responders and youth with ASD and their families. However, these resources are typically found across many different websites, and it can be difficult to find an aggregated guide of resources. Information in Table 1 provides an overview of

be difficult to find an aggregated guide of resources. Information in Table 1 provides an overview of currently available resources in this vein. Suggestions below the table include key points from these resource pages, as well as the clinical experiences of the authors. It is important to note that Dennis Debbaudt, an autism advocate and author, has developed many resources for law enforcers and the ASD community; some of these resources can be found in the links provided above. To conclude,

the ASD community; some of these resources can be found in the links provided above. To conclude, youth with ASD do come into contact with the JJS; however, it seems that these contacts are not ASD-specific. With regard to factors associated with the JJS involvement, there appears to be a link between school-based offenses as well as fighting behavior at school, which may increase the risk of youth with ASD becoming involved in the JJS. Yet, the causal nature of these associations still needs to

with ASD becoming involved in the JJS. Yet, the causal nature of these associations still needs to be explored. Importantly, interactions with law enforcers can be extremely difficult for youth with ASD given certain characteristics of the disorder. Therefore, it is vital to understand youth with ASD and their families’ experiences of the JJS in order to improve justice system interactions with individuals with the disorder and train law enforcers accordingly.

Suggestions for Law Enforcers *   It may be helpful to turn off police lights and cease sirens, as many youth with ASD are sensitive to bright light and loud noises.
*   Avoid approaching the youth from behind. *   Avoid touching the youth, which could exacerbate sensory sensitivity. *   Outbursts or impulsive behaviors are not uncommon in autism. If no one is at risk of harm, wait for the behavior to decrease before continuing conversations with the youth.

*   The youth may not respond to verbal commands; they may not understand the request or requirement, or they may be unsure how to respond in such a situation. Calmly and reassuringly, try again to communicate. You may have to repeat things multiple times or in different ways.
*   Speak slowly and clearly, avoiding slang and sarcasm, which may be difficult for youth with ASD to understand.
*   Using simple, plain language, pictures, or sym- bols may be more effective for communication.

*   Using simple, plain language, pictures, or sym- bols may be more effective for communication.
*   Allow time for the youth with ASD to respond to commands or requests (10–15 s).
*   Check for an identification bracelet or autism handout card. *   If there is a parent, caregiver, or adult support with the youth with ASD, consider speaking to them first as they may be able to tell you the best way to communicate to the youth.

*   Do not question youth with ASD without a support (e.g., caregiver, parent, legal guardian) present, as they may be easily influenced by others.
*   When questioning the youth, keep in mind that many youth with ASD may: *   Have difficulty with communicating and/or expressing themselves *   Respond more slowly than others their age     *   Not understand verbal commands, espe- cially if they are conveyed using metaphors, sarcasm, slang, or other imprecise terms

*   Not understand nonverbal communications (e.g., head nods, hand signals) *   Be nonverbal     *   Avoid making eye contact, while others with ASD may have very intense eye contact
    *   Try to hide their disability and not tell law enforcers that they have been diagnosed with ASD
*   Try to run away     *   Engage in repetitive behaviors (e.g., twirling objects, rocking, hand flapping, pacing, talking to themselves), and this can worsen with stress

*   Become upset with even slight changes to their routine *   Be interested in shiny objects such as your badge, keys, belt buckle, etc. *   Youth with ASD may need assistance filling out forms. You may have to offer general assistance or may have to read forms to the youth.

| Online resources for caregivers and law enforcers | |

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**Introduction** The rapid increase in the prevalence of autism spectrum disorder (ASD) has been increasingly met with the rise of many different therapeutic interventions. The overall effectiveness of these interventions and how they affect the quality of life (QoL) of autistic persons and their families remains largely understudied. Although there are numerous research studies on the effectiveness of autism interventions, the majority of them focus on the reduction of autism symptomatology as

of autism interventions, the majority of them focus on the reduction of autism symptomatology as measured by a third party, usually a clinician. Most researchers define effective intervention in terms of reduction of core ASD symptoms such as restricted and repetitive behaviors, and social communication deficits. There is often a mismatch between researchers’ definitions of effective treatment and autistic people's perceptions. When autistic individuals define their quality of life, they do not

autistic people's perceptions. When autistic individuals define their quality of life, they do not necessarily define it by the reduction of autism symptoms. The goals of autistic persons are often quite different from those of clinicians. For example, autistic adults often wish to receive support and services on things such as independent living and employment (Pellicano et al. 2014). This has led to a major theoretical shift where researchers and clinicians are starting to include autistic

led to a major theoretical shift where researchers and clinicians are starting to include autistic people and their families when defining effective treatment (Woods and Waltz 2019). The concept of quality of life has many different definitions across the globe and in many different research areas, ranging from economics to medicine to public health. Generally, health-related quality of life is an individual’s subjective assessment of their physical, emotional, and social well-being, but the

an individual’s subjective assessment of their physical, emotional, and social well-being, but the exact constructs being evaluated vary greatly. In a similar way, quality of life for autistic persons is not well defined and is often debated. It is important to ask autistic individuals how they define a good quality of life. The inclusion of autistic individuals in discussions about QoL can lead to better treatment and services (Crane et al. 2014). It is the aim of this entry to shed light on

to better treatment and services (Crane et al. 2014). It is the aim of this entry to shed light on how individuals with ASD define a good quality of life. Additionally, this entry will discuss how parents and caregivers define QoL for their children with ASD. Finally, this entry will describe some of the challenges in defining QoL, future directions, and provide an overview of current research on QoL in the ASD population.

**How Individuals with ASD Define a Good Quality of Life** There is a growing number of self-report studies regarding quality of life in ASD, as well as a growing number of scholars who are autistic. For example, some individuals with ASD define a good quality of life as having access to information about autism and how it affects them. Others express an interest in being accepted for who they are and having access to services such as therapy that allow them to live independently, and have a

are and having access to services such as therapy that allow them to live independently, and have a good social network and friends. Yet others consider things such as good physical health, the opportunity to use their skills to their full potential, and having meaningful relationships. Additionally, autistic individuals also define good quality of life as having a positive outlook on life, the ability to cope, and having a good standard of living. Autistic adults who consider themselves to be

to cope, and having a good standard of living. Autistic adults who consider themselves to be happy and to have good mental health also report high quality of life (Waldock 2019). This is especially true for those who have a more positive perception of their autism diagnosis (Russell et al. 2019).

One survey of 395 autistic adults found that a good quality of life was characterized by having meaningful relationships (both romantic and platonic), being accepted by society, and having a purpose in life. It was also determined that having the capacity to work and having employment were strongly related to high quality of life. This is especially important for autistic adults as they are often unemployed or underemployed (Hendricks 2010). Autistic adults who have paid work report higher QoL

unemployed or underemployed (Hendricks 2010). Autistic adults who have paid work report higher QoL (Hendricks 2010), but more work is needed to understand whether this is a direct relationship or if the relationship is indirect and mediated by other factors such as having a more positive outlook on life, greater self-efficacy, or higher levels of self-esteem (Hedley et al. 2018). In addition, autistic adults who have some level of independence and autonomy also report a higher quality of life

adults who have some level of independence and autonomy also report a higher quality of life (Howlin and Magiati 2017). This is especially important for autistic persons as they are often not in charge of their own lives. Indeed, autistic people report higher QoL when they are given the autonomy to make their own choices, and when they are not pressured to behave in ways that go against their nature (Milton 2017).

A longitudinal study of adolescents with ASD in Australia found that as they transition into adulthood, they tend to report a decrease in happiness and overall quality of life. This may be due to the decrease in services as they age (Morgan et al. 2015). Another study found that autistic adults tend to report higher levels of loneliness and dissatisfaction with their friendships, which contributes to lower levels of QoL (Hedley et al. 2018). This is especially important given that autistic

to lower levels of QoL (Hedley et al. 2018). This is especially important given that autistic individuals are at a higher risk of developing anxiety and depression, both of which are also linked to lower QoL (Cassidy et al. 2014). Social isolation is also correlated with lower QoL. More research is needed in this area, especially for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is

adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.).

**How Parents and Caregivers Define a Good Quality of Life for Their Children with ASD**

The impact of a child with ASD on a family varies widely. Some families report lower quality of life, while others do not (Dardas and Ahmad 2015). This may be due to a variety of factors, including the availability of support, the overall functioning of the family, and the degree to which there are other family stressors (e.g., poverty, mental illness, marital discord, etc.). It must be emphasized that the impact of a child with ASD on the family may not always be negative. Many families report

that the impact of a child with ASD on the family may not always be negative. Many families report that having a child with ASD has led to an overall increase in their levels of happiness (Bayat 2007).

While parents and caregivers are increasingly being included in research, most studies focus on the impact of a child with ASD on the parents, caregivers, and family units. There is little research on how parents and caregivers define a good quality of life for their children with ASD. One study asked parents of children with ASD in the United Kingdom to report their priorities for autism research. The priorities included research on support services and interventions (Pellicano et al. 2014).

The priorities included research on support services and interventions (Pellicano et al. 2014). This indicates that parents want to know what interventions are effective and how they can improve the lives of their children. Additionally, parents report that they want to know what services are available to them and how they can access these services. This is especially true for parents of children with ASD who live in rural areas (Pellicano et al. 2014). In addition, parents also report that

with ASD who live in rural areas (Pellicano et al. 2014). In addition, parents also report that they want to know how they can improve their children's social skills and how they can reduce their children's challenging behaviors. This indicates that parents are concerned about their children's ability to socialize and how they can improve their children's behavior. Finally, parents also report that they want to know how they can improve their children's academic performance. This indicates that

they want to know how they can improve their children's academic performance. This indicates that parents are concerned about their children's ability to succeed in school.

In general, parents and caregivers define a good quality of life for their children with ASD as having access to good quality services, having good social relationships, and being able to participate in activities that are meaningful to them. This is especially important for parents of children with ASD who have other comorbidities. More research is needed in this area, especially for those who have other mental health comorbidities. Autistic adults report that their physical health contributes

other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.). This is especially important given that autistic individuals are at a

food insecurity, etc.). This is especially important given that autistic individuals are at a higher risk of developing anxiety and depression, both of which are also linked to lower QoL (Cassidy et al. 2014). Social isolation is also correlated with lower QoL. More research is needed in this area, especially for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those

physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.).

It must be emphasized that the impact of a child with ASD on the family may not always be negative. Many families report that having a child with ASD has led to an overall increase in their levels of happiness (Bayat 2007). Parents of children with ASD often report high levels of stress and anxiety (Hayes and Watson 2013). This is especially true for parents of children with ASD who have other comorbidities. More research is needed in this area, especially for those who have other mental health

More research is needed in this area, especially for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.).

**Challenges in Defining QoL and Future Directions** Defining quality of life for autistic persons is challenging for a variety of reasons. One reason is that autistic individuals are a heterogeneous group. This means that there is no one definition of quality of life that applies to all autistic persons. For example, some autistic individuals may define a good quality of life as having a high level of independence, while others may define it as having a strong social network. Another reason why

of independence, while others may define it as having a strong social network. Another reason why defining quality of life is challenging is that it is a subjective concept. This means that what one person considers to be a good quality of life, another person may not. For example, some autistic individuals may consider having a repetitive routine to be a good quality of life, while others may consider it to be a bad quality of life. Finally, defining quality of life is challenging because it is a

it to be a bad quality of life. Finally, defining quality of life is challenging because it is a dynamic concept. This means that it can change over time. For example, an autistic individual who is happy with their quality of life as a child may not be happy with their quality of life as an adult. More research is needed in this area, especially for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life,

Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.). This is especially important given that autistic individuals are at a higher risk of developing anxiety and

especially important given that autistic individuals are at a higher risk of developing anxiety and depression, both of which are also linked to lower QoL (Cassidy et al. 2014). Social isolation is also correlated with lower QoL. More research is needed in this area, especially for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical

to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.).

Future research needs to continue to focus on self-report measures of QoL. This is especially important for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g.,

to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.). This is especially important given that autistic individuals are at a higher risk of developing anxiety and depression, both of which are also linked to lower QoL (Cassidy et al. 2014). Social isolation is also correlated with lower QoL. More research is needed in this area, especially for those who have other mental health comorbidities. Autistic

is needed in this area, especially for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.).

Additionally, future research needs to focus on longitudinal studies of QoL. This is especially important for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g.,

to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.). This is especially important given that autistic individuals are at a higher risk of developing anxiety and depression, both of which are also linked to lower QoL (Cassidy et al. 2014). Social isolation is also correlated with lower QoL. More research is needed in this area, especially for those who have other mental health comorbidities. Autistic

is needed in this area, especially for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.).

Finally, future research needs to focus on developing interventions that improve QoL. This is especially important for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health

health to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.). This is especially important given that autistic individuals are at a higher risk of developing anxiety and depression, both of which are also linked to lower QoL (Cassidy et al. 2014). Social isolation is also correlated with lower QoL. More research is needed in this area, especially for those who have other mental health comorbidities.

research is needed in this area, especially for those who have other mental health comorbidities. Autistic adults report that their physical health contributes to their overall quality of life, and this is especially true for those who have other physical comorbidities. Future research needs to examine the contribution of physical health to quality of life as well as how this is affected by the social determinants of health (e.g., poverty, access to housing, food insecurity, etc.).

George M. Anderson Laboratory of Developmental Neurochemistry, Yale Child Study Center, Yale University, New Haven, CT, USA

Synonyms Cerebrospinal fluid 5-hydroxyindoleacetic acid Definition Cerebrospinal fluid (CSF) levels of 5-hydroxyindoleacetic acid (5-HIAA), the principal metabolic end product produced from the neurotransmitter serotonin, are measured to provide a global index of serotonin production in the brain. Taken together, studies of CSF 5-HIAA in autism indicate that group mean levels are not altered in autism.

George M. Anderson Laboratory of Developmental Neurochemistry, Yale Child Study Center, Yale University, New Haven, CT, USA

Synonyms Cerebrospinal fluid homovanillic acid Definition Cerebrospinal fluid (CSF) levels of homovanillic acid (HVA), the principal metabolic end product produced from the neurotransmitter dopamine, are measured to provide a global index of dopamine production in the brain. Taken together, studies of CSF HVA in autism indicate that group mean levels are not altered in autism.

Julie Bender1, Erin Gelinas1, Nicole Fischer1 and Barbara A. Cook2 1Department of Communication Disorders, Southern Connecticut State University, New Haven, CT, USA
2Department of Communication Disorders, Center of Excellence on Autism Spectrum Disorders, Southern Connecticut State University, New Haven, CT, USA

Definition Cultural responsiveness is an aspect of quality assessment and education that requires being aware of the cultural differences that may affect one’s knowledge and consciously adapting to ensure that each child is being accurately assessed and is being taught in a way that is both relevant and effective with respect to their culture (Gay 2000).

Historical Background Practitioner competence in the use of cultural responsiveness would result in quality assessment and indicate being aware of the cultural differences that may affect performance, thus lead to consciously adapting evaluation protocols to ensure that each child is being accurately assessed in a way that is both accepting and respectful of their culture (Paul et al. 2018). Evaluation protocols that include assessment batteries that are not culturally responsive have the

Evaluation protocols that include assessment batteries that are not culturally responsive have the potential to overdiagnose language disorders in individuals who are culturally diverse (Paul et al. 2018). Culturally diverse children may have language differences, which are styles of language that are different from the standard language of one’s culture, yet still follow a rule-governed style (Paul et al. 2018). If an individual has a language difference, it does not imply that this individual

et al. 2018). If an individual has a language difference, it does not imply that this individual has impairment in the ability to learn language nor should they be diagnosed with a language disorder. An individual with a language difference has the capacity to learn the standard language after simply being exposed over time, whereas, individuals with language disorders have impairments that typically require intervention in order to meet social and academic expectations (Paul et al. 2018).

Alternatively, a lack of cultural responsivity by practitioners can result in the delay of a diagnosis of some developmental disabilities such as Autism Spectrum Disorder. Those of different cultures may lack knowledge of the subtle cues or signs relating to Autism Spectrum Disorder (ASD) and view these changes as a normal process that occurs for all developing children (Danesco 1997). This can impact when or if the child is referred to professionals to then be assessed. For example,

This can impact when or if the child is referred to professionals to then be assessed. For example, socioeconomic status and one’s background does not dictate whether or not a child has autism, but may contribute to a physician’s decision to screen for ASD (Gibson 2007). As a result, the socioeconomic status of children may cause a delayed diagnosis for certain individuals, especially for African American children. These children are 2.6 times less likely to receive a diagnosis of autism

American children. These children are 2.6 times less likely to receive a diagnosis of autism compared to their Caucasian peers (Mandell et al. 2007). Therefore, it is important for practitioners to be aware of these potential culturally related biases and be prepared to proactively reach out to the community to assist in reducing the disparity of diagnosis that occurs (Wiggins et al. 2019). Further, the disparity of diagnosis of autism in culturally diverse individuals can likely be further

the disparity of diagnosis of autism in culturally diverse individuals can likely be further confounded when utilizing assessment protocols that are inconsistent with their responsivity to diverse cultures. In an effort to better understand the degree of cultural responsiveness of a few commonly used test batteries for the development of language, and potentially as they are used as part of a comprehensive evaluation for possible diagnosis of ASD, this review of literature explores the

of a comprehensive evaluation for possible diagnosis of ASD, this review of literature explores the following instruments: Communication and Symbolic Behavior Scale (CSBS), Diagnostic Evaluation of Language Variation-Norm Referenced (DELV-NR), Clinical Evaluation of Language Fundamentals Preschool-2 (CELF-P2), Token Test for Children-Second Edition (TTFC-2), and the Preschool Language Scale-Fifth Edition (PLS-5). The question of the likelihood of overdiagnosing culturally diverse children with

Edition (PLS-5). The question of the likelihood of overdiagnosing culturally diverse children with language disorders when using these test batteries is explored. The information provided will serve as an initial step in providing knowledge to support use of cultural responsiveness by clinicians as they use these test batteries to assess the language skills of culturally diverse children and those who present with ASD.

Current Knowledge CSBS The Communication and Symbolic Behavior Scale assesses the social, communicative, and symbolic abilities of children. It was created for children between the ages of 8 months and 2 years. This assessment is comprised of the Caregiver Questionnaire which collects information about the child’s communicative skills, the Behavior Sample, a play-centered method of collecting data that is videotaped for scoring, and the Caregiver Perception Rating form. This form is filled out

that is videotaped for scoring, and the Caregiver Perception Rating form. This form is filled out by the caregiver after observing the Behavior Sample and collects information on how often the child typically exhibits the behavior revealed in the sample. This assessment battery includes toys and books to elicit spontaneous communication. The CSBS is useful in a natural environment to observe a child’s play and communicative skills (Wetherby and Prizant 2003). A shortened version of the CSBS is

play and communicative skills (Wetherby and Prizant 2003). A shortened version of the CSBS is the CSBS DP: The Communication and Symbolic Behavior Scales Developmental Profile. This was created to be more efficient than the original version. The CSBS DP has been identified as an assessment tool that can be used cross-culturally with relatively consistent outcomes. In 2016, there were no standardized tests to assess early social communication skills in South African (SA) children (Chambers et al.

tests to assess early social communication skills in South African (SA) children (Chambers et al. 2016). The scores of 67 English-speaking South African children on the CSBS DP Behavioral Sample were compared to the standardized scores. The researchers found that from 15 months of age there seemed to be little bias for, or against, SA subjects compared to those in the United States. Based on these results, the researchers concluded that the CSBS DP was culturally fair in assessing South African

results, the researchers concluded that the CSBS DP was culturally fair in assessing South African children from different cultural backgrounds (Chambers et al. 2016). However, the score on the Words cluster subtest revealed differences between children who were monolingual and those who spoke more than one language, with the children who spoke multiple languages scoring lower on the Words cluster section. Yet their scores were still within the limits of the assessment. The toddlers in the SA

section. Yet their scores were still within the limits of the assessment. The toddlers in the SA sample performed well on the gaze tasks, but not as consistently as those in the US groups. As stated previously, this finding may be because of a difference between the cultures being compared. It is possible that the children from the SA sample are more reserved than those from the US sample (Chambers et al. 2016).

Similarly, Roberts et al. (1997) suggest that the CSBS DP is helpful in detecting communication delays in children who are outside of the standardization sample. They assessed 93 African-American 1-year-old children, the majority of them living below poverty level. The results were similar to those of the standardized sample, with the exception of gestural means, which was lower than those of the children in the standardized sample. There are a number of reasons this could be, including

of the children in the standardized sample. There are a number of reasons this could be, including differences in how the African-American culture uses gestures or the differences in parents’ interaction. The overall results of this group were similar to those of the standardized sample, thus supporting that the standardized sample is fairly representative cross-culturally (Roberts et al. 1997). Alternatively, Tek and Landa (2012) argue that the CSBS may not be sensitive enough to cultural

Alternatively, Tek and Landa (2012) argue that the CSBS may not be sensitive enough to cultural differences. When comparing 19 minority toddlers to 65 Caucasian toddlers, the CSBS Caregiver Questionnaire was used. The minority children in this study showed more atypical language and communication scores than their non-minority counterparts, especially on the CSBS Words and the CSBS Understanding of Words. The researchers concluded that minority parents may not view certain behaviors or delayed

of Words. The researchers concluded that minority parents may not view certain behaviors or delayed milestones as concerning, relating to a gap in scores. For example, in some Asian cultures, eye contact with elders is considered disrespectful and a lack of eye contact will result in a lower score on the CSBS Social Composite section. A cultural difference must be determined here so that a child is not wrongly scored. This study was largely made up of children from the upper middle class,

is not wrongly scored. This study was largely made up of children from the upper middle class, independent of ethnicity, so it would be important to compare minorities from a lower class as well (Tek and Landa 2012). Overall, the CSBS is a promising tool for groups that it was not standardized on, and the research thus far shows that it is a culturally responsive assessment tool.

DELV-NR The Diagnostic Evaluation of Language Variation-Norm Referenced (DELV-NR) is an assessment used to language skills within the domains of phonology, semantics, syntax, and pragmatics of children between the ages of 4 and 9 years, 11 months who speak English as their primary language yet a dialect that is considered varied from Mainstream American English (MAE) (Seymour et al. 2018, p. 1). The DELV-NR can be used to diagnose children with speech and language delays or disorders, and to

The DELV-NR can be used to diagnose children with speech and language delays or disorders, and to differentiate delays and disorders from language differences that are seen in dialects other than MAE. Test materials for the administration of the DELV-NR include a stimulus book with colored images as well as a response form. Each domain of language is assessed using multiple subtests and administration of the entire test takes approximately 45 min. Scores can be used to determine a percentile

of the entire test takes approximately 45 min. Scores can be used to determine a percentile rank in each domain as well as to diagnose a language or speech disorder. To limit the impact of cultural bias on the test results of culturally diverse children, the DELV-NR clearly distinguishes features of English that are found in every dialect from features that differ between English dialects and focuses only on the universal features of English dialects. By doing this, it creates a dialect neutral

only on the universal features of English dialects. By doing this, it creates a dialect neutral assessment that limits the ability for speaking a dialect other than MAE to impact test results. Therefore, results on the DELV-NR clearly distinguish between a language difference and a disorder. This assessment filled a gap in the available resources for the assessment of children who are culturally and dialectically diverse, and it addressed a significant weakness that is present in many other

and dialectically diverse, and it addressed a significant weakness that is present in many other assessment materials. Many assessments lack test materials that use only the aspects of language that are universal across all dialects of English. This can lead to struggles in distinguishing language differences from language disorders as many children who speak English dialects other than MAE receive low scores on these assessments. While children may provide responses that are grammatically

low scores on these assessments. While children may provide responses that are grammatically correct in their dialect, it could result in lower scores if it does not match the desired response in MAE. This often leads to the overdiagnosis of dialectically diverse children, which could lead to unnecessary speech and language services being provided (Losen and Orfield 2002; Robinson and Norton 2012). One study found that the DELV-NR was able to provide a detailed summary of children’s language

One study found that the DELV-NR was able to provide a detailed summary of children’s language skills that were highly consistent with their spontaneous speech language samples. They also concluded that the DELV-NR can help improve the quality of assessment and diagnostic accuracy of language impairments in dialectically diverse children (Pearson et al. 2014). Additionally, because the DELV-NR was normed on 900 children who were representative of the demographic diversity of the general

was normed on 900 children who were representative of the demographic diversity of the general population of the United States based on the 2002 U.S. Census, its diagnostic criteria is relevant for speakers of diverse English dialects as well as speakers of MAE (Seymour et al. 2018, p. 109). By establishing a test that focuses on using the aspects of language that are universal across all dialects of English, the DELV-NR is able to distinguish language differences from disorders with greater

of English, the DELV-NR is able to distinguish language differences from disorders with greater accuracy and minimize the overdiagnosis of language disorders in children (Pearson et al. 2014).

CELF-P2 The Clinical Evaluation of Language Fundamentals Preschool-2 assesses morphology, phonology, syntax, semantics, and pragmatics in children ages 3–6 years, 11 months. In this assessment, children respond to picture stimuli in an easel style book, by either verbally responding or pointing. Identifying a language disorder or delay that has a negative impact on a child’s success in the classroom is a goal of this assessment. The normative sample of 1500 preschool aged children was

classroom is a goal of this assessment. The normative sample of 1500 preschool aged children was representative of the United States population at the time of its creation in 2002. 62.1% of the normative sample was white while 37.9% was non-white. It is important to note although the normative sample would have changed since 2002, it is representative of the population at that time (Wiig et al. 2004). The CELF-P2 UK is a version of this assessment used in the United Kingdom and it is one of the

The CELF-P2 UK is a version of this assessment used in the United Kingdom and it is one of the most widely used standardized assessments in that nation. Similar to the USA, it is maintained that children in the UK who come from disadvantaged backgrounds are more likely to have language delays than those from privileged communities (Ryan et al. 2016). Additionally, a Spanish version of the CELF-P2 has been developed. The norms for this battery were created based on a range of children from

has been developed. The norms for this battery were created based on a range of children from culturally, racially, and ethnically different backgrounds. Although not included in the CELF-P2, it is notable that in the fourth revision (CELF-4), there is a section in the manual discussing the influences of African American and Spanish cultures (Paslawski 2005). Current research suggests the CELF-P2 as mostly culturally responsive. For example, children adopted from Eastern Europe between the ages

as mostly culturally responsive. For example, children adopted from Eastern Europe between the ages of 1 and 4 years, 11 months were assessed on the CELF-P2 with Russian, Hungarian, or Romanian as their first language. The scores of these children were within average range for both expressive and receptive language, displaying cultural relativity with minor language differences not effecting scores. Therefore, this assessment can be appropriate to use on children from different cultures,

scores. Therefore, this assessment can be appropriate to use on children from different cultures, assuming that they can understand English (Glennen 2015). In another study examining Aboriginal Australian children, the children who used Aboriginal English performed well on the CELF-P2. The use or lack of use of Aboriginal English did not predict children’s performance on the CELF-P2 language sample portion. An explanation for this could be either the assessment tool is not sensitive enough to

portion. An explanation for this could be either the assessment tool is not sensitive enough to the differences between Aboriginal English and Standard Australian English, or that the children are code-switching. Overall, it is determined that this is an appropriate assessment to use for children in the early language development stages (Miller et al. 2014).

TTFC-2 The Token Test for Children-Second Edition (TTFC-2) assesses receptive language difficulties in children ages 3–12 years, 11 months. Scores from this assessment reflect the child’s ability to complete multiple-step oral directions, understand expressive language, and use their short-term auditory memory. The linguistic components assessed include syntactic structures, knowledge of prepositional and relational concepts, and semantic development. The TTFC-2 includes contextualized stimuli

and relational concepts, and semantic development. The TTFC-2 includes contextualized stimuli of 46 verbally transmitted commands divided into four parts based on their complexity level, allowing measurements to concretely reflect the child’s receptive language and not rely on verbal expression (DiSimoni et al. 2007). The original TTFC efficacy for evaluating children has not been promising due to its lack of age norms, socioeconomic group comparison and lack of clarity in data collection

due to its lack of age norms, socioeconomic group comparison and lack of clarity in data collection (DiSimoni 1978). This led to the creation of the TTFC-2 in 2007 by DiSimoni, Ehrlet, and McGhee, which showed improvement from the first edition in validity, reliability, and normative data by having it be a diverse representative of the demographics of the current United States population. The standardization of the TTFC-2 was based on of geographically diverse communities which included

The standardization of the TTFC-2 was based on of geographically diverse communities which included minorities such as those who identify as African American, Hispanic, Asian, and Native American. However, the sample for standardization failed to provide socioeconomic status. The format of the TTFC-2 assessment holds clinical value for diverse cultural linguistic communities. Several versions have been developed such as Dutch, German, Khmer, Kannada, Polish, Portuguese, and several

versions have been developed such as Dutch, German, Khmer, Kannada, Polish, Portuguese, and several Spanish-speaking populations (Gallardo et al. 2011). Although many versions lack standardization and psychometric evidence, resulting in poor efficacy, there are two versions that do hold validity and reliability. The A-TTFC was created for native speakers of Arabic (Alkhamra and Al-Jazi 2016) and presents as a valid and reliable assessment. The test was changed into an appropriate Arabic format

presents as a valid and reliable assessment. The test was changed into an appropriate Arabic format without adjusting any content and measures of the TTFC and presents with similar clinical strengths for Arabic-speaking children as the TTFC-2 does for English-speaking children. The Revised Token Test (RTT) has shown to be a reliable and valuable tool for assessment for Spanish-speaking children due to its psychometric sensitivity. Spanish speaking children are the most frequent ethnic group

due to its psychometric sensitivity. Spanish speaking children are the most frequent ethnic group receiving services from speech-language pathologists, so it is important to have a reliable assessment for this population in order to avoid under referrals or over referrals (Roseberry-Mckibbin and Eicholtz 1994). Although this revised assessment has shown to result in valid results, additional research is needed with the normative data for these revisions before relying on these versions of

research is needed with the normative data for these revisions before relying on these versions of assessments throughout practice.

PLS-5 The Preschool Language Scales, Fifth Edition (PLS-5) is used to evaluate the domains of Auditory Comprehension (AC) and Expressive Communication (EC) in children from birth to the developmental age of 7 years, 11 months. This test assesses several domains including: “attention, gesture, play, vocal development, social communication, vocabulary, concepts, language structure, integrative language, and emergent literacy” (Zimmerman et al. 2011). The results of this test can be used to

language, and emergent literacy” (Zimmerman et al. 2011). The results of this test can be used to determine areas of difficulty and strength, and to track the child’s progress over time. The results of this test can identify if the child has a language delay or language disorder, and if it is expressive, receptive, or both. The PLS-5 provides norm-referenced scores for both the AC and EC sections. Additionally, it provides the information necessary to calculate a Total Language score. Based on

Additionally, it provides the information necessary to calculate a Total Language score. Based on the standard score that the child receives, the clinician can determine the distance from mean, percentile rank, and age equivalent for that child. These scores can help determine where the child’s communication skills fall compared to other children of the same age (Zimmerman et al. 2011). The PLS-5 accounts for dialectical differences by providing correct responses for the dialects of

The PLS-5 accounts for dialectical differences by providing correct responses for the dialects of African-American English, Appalachian English, English influenced by Chinese languages, English influenced by Spanish, and Southern English. This decreases the likelihood that children will be penalized for speaking with a dialect other than Standard American English provided the clinician is aware of the dialectical difference and references the applicable correct responses. While there are several

the dialectical difference and references the applicable correct responses. While there are several benefits of using this test battery, there are also cultural and environmental limitations that have been indicated. For example, when using this assessment on Mandarin-speaking children, most of the 4-year-olds were unable to express what they would do with a coat, towel, or cup, and nearly half of the 3-year-olds were unable to answer the questions about what they would do if they were sick (Ren

the 3-year-olds were unable to answer the questions about what they would do if they were sick (Ren et al. 2016). In this culture, it is rare for children to be encouraged to participate in self-care tasks, which could negatively affect their performance on sections of this test battery and lead to the over-referral of children from this culture. Additionally, factors such as socioeconomic status or prior exposure to stimuli could affect performance on this assessment. There is evidence that

or prior exposure to stimuli could affect performance on this assessment. There is evidence that children from low socioeconomic status may perform more poorly on vocabulary tasks than children from higher socioeconomic status homes due to lack of exposure, even though the ability to learn new vocabulary is not impaired (Horton-Ikard and Weismer 2007). These limitations could lead to the overdiagnosis of culturally diverse children with language disorders in expressive language and auditory

of culturally diverse children with language disorders in expressive language and auditory comprehension of language and lead to providing treatment services to individuals who do not need these services, unnecessarily taking up the time of both the student and the clinician.

Future Directions Many assessment batteries that are commonly used in the United States for the assessment of language skills and the diagnosis of language delays and disorders in children have cultural limitations that could potentially lead to the overdiagnosis of culturally diverse children (Horton-Ikard and Weismer 2007; Losen and Orfield 2002; Pearson et al. 2014; Robinson and Norton 2012; Roseberry-Mckibbin and Eicholtz 1994). This initial review of literature has examined the cultural

Roseberry-Mckibbin and Eicholtz 1994). This initial review of literature has examined the cultural limitations in the commonly used test batteries and reveals the necessity to continue to explore standardized measures for their degree of cultural sensitivity and responsiveness. While some assessment tools, such as the DELV-NR (Seymour et al. 2018), were designed to be dialectically neutral to improve the diagnostic accuracy of language disorders in this population, other commonly used

to improve the diagnostic accuracy of language disorders in this population, other commonly used assessments were found to have weaknesses that could lead to the overdiagnosis of children who are culturally diverse. As the world is becoming more culturally responsive, our language assessments must follow suit. Looking ahead, clinicians must be vigilant in responding to the differences presented by children and acknowledge cultural differences prior to the administration of an assessment. Miller

children and acknowledge cultural differences prior to the administration of an assessment. Miller et al. (2014) suggest using language assessments with other language analysis methods that are culturally appropriate. Further, they suggest that speech-language pathologists should be sensitive to the varied cultures and languages that children are exposed to and not make any assumptions regarding their culture and the impact on their language comprehension and expression (Miller 2014). Lack of

their culture and the impact on their language comprehension and expression (Miller 2014). Lack of awareness of these weaknesses is clinically relevant and could lead to providing services to individuals who do not require intervention or result in a child being delayed in receiving services. A culturally responsive clinician should be aware of the degree of cultural bias in the test batteries they are using to evaluate their clients in order to accurately assess the language skills of

they are using to evaluate their clients in order to accurately assess the language skills of culturally diverse children and provide services only if they are necessary (Paul et al. 2018).

Raymond Won Shing Chan1 and Cecilia Nga Wing Leung2 1ASD Services, New Life Psychiatric Rehabilitation Association, Kowloon, Hong Kong
2The Jockey Club iREACH Social Competence Development and Employment Support Center, New Life Psychiatric Rehabilitation Association, Kowloon, Hong Kong

Definition The CBT-context-based social competence training for ASD (CBT-CSCA) was a social competence training specifically developed for Hong Kong Chinese adolescents with ASD. The CBT-CSCAwas grounded on cognitive-behavioral therapy and incorporated cultural-sensitive elements. It demonstrated the effectiveness in improving social competence among adolescents with ASD in Hong Kong, and the gains were sustained 3 months after the training.

Historical Background Impaired social functioning is a hallmark feature of autism spectrum disorder (ASD). It becomes a defining feature in the current diagnostic approaches (American Psychiatric Association; APA 2013). Despite improvements shown in other features of ASD upon interventions, social difficulties persist as individuals enter adolescence and young adulthood (Schall and McDonough 2010). This persistence is possibly due to a rapid change in the social landscape and the increase in the

This persistence is possibly due to a rapid change in the social landscape and the increase in the complexity of social interaction during adolescence. In the lack of the necessary social skills to handle complex social situations, adolescents with ASD tend to suffer from a number of negative consequences, including restricted social circle, peer rejection, and bullying (Rieffe et al. 2010). Without pleasant social experiences, adolescents with ASD also suffer from a high prevalence of

Without pleasant social experiences, adolescents with ASD also suffer from a high prevalence of psychiatric disorders (Simonoff et al. 2008). Presumably, equipping adolescents with ASD with appropriate social skills improves their social deficits as well as their comorbid psychiatric symptoms. Addressing the critical socialization needs of adolescents with ASD, there has been a rapid increase in research on social competence interventions for adolescents with ASD since the previous decade

in research on social competence interventions for adolescents with ASD since the previous decade (Reichow et al. 2013). Group-based intervention has demonstrated initial success (Miller et al. 2014), such as the Program for the Education and Enrichment of Relational Skills (PEERS) (Laugeson et al. 2012), the Multimodal Anxiety and Social Skills Intervention (MASSI) program (White et al. 2013), and Skillstreaming (Lopata et al. 2008). However, most studies published are designed and validated

and Skillstreaming (Lopata et al. 2008). However, most studies published are designed and validated in the Western culture, such as the USA, Germany, and Scotland, limiting their generalizability. Studies in the East included only the validation studies of the PEERS in Korea (Yoo et al. 2014) and Hong Kong (Shum et al. 2019).

Current Knowledge In light of the distinctiveness of Chinese culture as compared to the West, the CBT-context-based social competence training for ASD (CBT-CSCA) was developed locally to cater the unique cultural and service needs for Chinese adolescents with ASD. The CBT-CSCA followed the definition of social competence suggested by Bierman and Welsh (2000) “an organisational construct that reflects the child/adolescent’s capacity to integrate behavioural, cognitive and affective skills to

reflects the child/adolescent’s capacity to integrate behavioural, cognitive and affective skills to adapt flexibly to diverse social contexts and demands”. The training content of CBT-CSCA followed the model proposed by Yager and Iarocci (2013). The seven domains of social competence were organized into four modules of training, specifically social context (social motivation and social knowledge), behavior (verbal conversational and nonverbal sending skills), emotion (emotion regulation skills

behavior (verbal conversational and nonverbal sending skills), emotion (emotion regulation skills and demonstrating empathic concern), and cognition (social inferencing). In each module, specific and concretized behavioral and cognitive skills are listed as targets of training. The training consisted of 15 weekly sessions (see Table 1). Each session lasted for 120 min and followed a standardized format modeling a CBT session. Typically, homework was reviewed at the beginning of each meeting,

format modeling a CBT session. Typically, homework was reviewed at the beginning of each meeting, with compliance and quality recorded. It was followed by didactic teaching and role-played demonstrations on the targeted skills of each session. Newly learned skills were rehearsed by adolescents, during which they received performance feedback. The teaching was followed by a naturalistic game and snack times, during which the use of learned skills from the trainees was systematically reinforced.

times, during which the use of learned skills from the trainees was systematically reinforced. Before the session ended, a test on teaching materials was distributed to consolidate learning. Homework for the coming week was assigned to encourage skills generalization to natural settings.

| Session | Module | Contents | Homework | |:--------|:-------|:---------|:---------| | 1       | Social context: motivation | Introduce the purpose, structure, and rules of the training program <br> Enhance motivation in group participation | Adolescents record social encounters and the benefits of these encounters |

| 2       | Social context: knowledge | Understand hidden social rules in social contexts <br> Learn how to detect hidden social rules in social contexts common to adolescents <br> Introduce perspective-taking questions | Adolescents detect hidden social rules in contexts common to them and evaluate their performance in following them |

| 3       | Social context: knowledge | Understand general social rules across different social contexts <br> Learn how to detect general social rules | Adolescents apply skills in detecting general social rules in different settings |
| 4       | Behavior: active listening | Learn active listening skills <br> Detect signals of exiting conversations and practice their application | Adolescents apply active listening skills and signals of exiting conversations |

| 5       | Behavior: conversation | Learn how to end and maintain conversations <br> Understand four conversation blockers | Adolescents practice skills in ending and maintaining conversations |
| 6       | Behavior: conversation | Learn how to initiate and maintain conversations <br> Practice skills in initiate, maintain, and end conversations in different social contexts | Adolescents practice integrated skills in initiating, maintaining, and ending conversations |

| 7       | Behavior: electronic communication | Learn how to join a group conversation <br> Learn skills in electronic communication | Adolescents practice skills in joining a group conversation and electronic communication |

| 8       | Emotion: facial recognition and expression | Understand how to recognize emotions through facial expressions <br> Practice expressing emotions through facial expressions | Adolescents practice recognizing and expressing emotions using facial expressions with family members |

| 9       | Emotion: Gestural and tonal recognition and expression | Understand how to skills emotions through tonal and gestural expressions <br> Practice expressing emotions through tonal and gestural expressions | Adolescents record an emotional incident and retell it with application of facial, tonal, and gestural expressions |

| 10      | Emotion: regulation | Learn skills to handle criticisms and related negative emotions | Adolescents record incidents of criticisms and how they apply the skills in handling criticisms |
| 11      | Emotion: empathy | Understand what empathy is <br> Learn how to deliver empathic responses | Adolescents record incidents that they apply the skills taught in delivering empathic responses |

| 12      | Cognition: social inference | Learn how to make inference on others’ thoughts | Adolescents record incidents that they apply skills in making inference on others’ thoughts |
| 13      | Integration: friendship building | Understand interpersonal circle <br> Learn how to join group activities and detect unwelcome signals | Adolescents build a friendship with one of the members of the group by phone conversations or electronic communication |

| 14      | Integration: planning group activities | Learn how to invite others to join group activities and plan for group activities | Adolescents prepare their speech to be shared at the graduation party |
| 15      | Graduation | Share learning in the program <br> Celebrate for graduation | N/A |

Regarding cultural-sensitive elements, familiar social contexts unique to local youth were first identified and subsequently included as a basis for training. These social contexts included dining out with family relatives, visiting extended family members, group project discussion in school, and visiting arcade with peers. Besides, training activities and games were designed concerning the local popular culture. For instance, a popular local game that the winner of rock-paper-scissors would

popular culture. For instance, a popular local game that the winner of rock-paper-scissors would become an “emperor” was modified to require players to demonstrate active listening skills in becoming the emperor. Common local board games were also prepared during the naturalistic game time in each session. The training program was conducted by trained workers, who were registered clinical psychologists, counselors, or social workers, all with a graduate or postgraduate qualifications and

psychologists, counselors, or social workers, all with a graduate or postgraduate qualifications and substantial experience in conducting social competence training with adolescents with ASD. Workers were fully trained in the CBT-CSCA with confirmed competence. The implementation fidelity of the training was ensured through regular on-site checking regarding the established manual and bi-weekly supervision by the first author (RC). The CBT-CSCA was validated with local assessment tools on social

by the first author (RC). The CBT-CSCA was validated with local assessment tools on social competence, autistic symptoms, general psychopathology, and parental stress. In a group of 25 adolescents (aged 12 to 17 years, with an FSIQ above 80), significant improvements in social competence, autistic symptoms, and general psychopathology at post-training and 3-month follow-up were reported by the parents. The findings provided evidence support to the integrative multi-module approach of CBT-CSCA and

The findings provided evidence support to the integrative multi-module approach of CBT-CSCA and its crucial training components. The positive results on autistic symptoms and general psychopathology in the present study support the spillover effect of social competence training on improving the related symptoms of ASD. The inclusion of emotion and cognition components in CBT-CSCA is considered to be contributive to the observed significant positive changes. The findings also support the

to be contributive to the observed significant positive changes. The findings also support the proposition that ASD is primarily a social development disorder and addressing social deficits is a centrality approach for ASD (Chan et al. 2014). The CBT-CSCA was guided by established theoretical propositions, appropriate cultural adaption, empirically supported training strategies, and relevant contextual contents. It also gives preliminary evidence to the validity of using such an approach in

contents. It also gives preliminary evidence to the validity of using such an approach in constructing culturally sensitive and effective social interventions for persons challenged by ASD. Apart from the cultural components, CBT-CSCA also adopts an integrative multi-module approach and underlines the importance of context, behavior, emotion, and cognition in social competence learning. Unlike the common practice of translating and adopting foreign-developed training program, the CBT-CSCA was

common practice of translating and adopting foreign-developed training program, the CBT-CSCA was locally developed, with the incorporation of culturally sensitive training contents and activities. The program was not only theoretically valid and empirically supported, but it also accommodated the unique cultural needs of Hong Kong adolescents. The CBT-CSCA also served as an exemplar of developing local treatment programs via cultural adaptation in the mental health setting.

Future Directions Despite availability and provision of intervention at the younger age, intervention gains do not seem to translate into adulthood. Prognosis in adulthood was often unsatisfactory (Levy and Perry 2011). Social incompetence often remained to be one of the most disabling impairments among adults with ASD, potentially contributed by the rise in complexity and salience of social relationships (Tantam 2003). To address the continuity of social impairments, adults with ASD would

relationships (Tantam 2003). To address the continuity of social impairments, adults with ASD would need psychosocial interventions addressing their unique social challenges. Although there is social skills intervention for adults with high-functioning ASD (see Spain and Blainey 2015 for a review), studies were mostly in lack of cultural diversity, in which all were conducted in the Western countries. There was a need for effective intervention to serve the ASD population in the East. Given the

There was a need for effective intervention to serve the ASD population in the East. Given the demonstrated effectiveness of CBT-CSCA in adolescents, the extension in the application of CBT-CSCA on adults with ASD shall be investigated.

Roy Grinker1, Tamara C. Daley2 and David S. Mandell3,4 1Anthropology, The George Washington University, Washington, DC, USA 2Westat, Durham, NC, USA 3Center for Autism Research, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA

4University of Pennsylvania, Philadelphia, PA, USA Definition The understanding of autism can only be gained by further examination of autism both across and within cultures. Careful attention to observed similarities and differences will allow a better understanding of the disorder as well as better design and development of interventions that are applicable to families of all backgrounds. This entry describes research to date on how culture influences the epidemiology, diagnosis, and treatment

describes research to date on how culture influences the epidemiology, diagnosis, and treatment of autism throughout the world, with a special focus on family functioning, and disparities in diagnosis and care.

Historical Background While knowledge about autism is increasing rapidly throughout the world, there are to date few scientific studies of the characteristics, prevalence, and phenotypes of autism spectrum disorder (ASD) outside of North America and Western Europe and how culture, race, and ethnicity influence the understanding and management of ASD. Researchers have long agreed that autism occurs in families across races and socioeconomic backgrounds and, based on the presence of autism parent

in families across races and socioeconomic backgrounds and, based on the presence of autism parent organizations in more than 100 countries, there is clear evidence that a constellation of behaviors has been recognized as “autism” on every continent. Researchers are just beginning to study, however, the extent to which ASD varies both across and within cultures. While there appear to be similarities in the onset and core symptoms of ASD around the world, this remains an untested assumption. ASD

in the onset and core symptoms of ASD around the world, this remains an untested assumption. ASD experts to date are gradually learning more about how cultural differences may influence its prevalence, diagnosis, treatment, presentation, course, and family function.

Current Knowledge Prevalence The received view is that the prevalence of autism is consistent across races and cultures (Fombonne 2003). However, for many years, epidemiological studies were carried out primarily in North America and Western Europe. Work from outside these areas was limited, with the notable exception of Japan (e.g., Honda et al. 2005; Matsuishi et al. 1987; Sugiyama and Abe 1989). In recent years, reports of prevalence have come from Singapore (Bernard-Optiz et al. 2001),

1989). In recent years, reports of prevalence have come from Singapore (Bernard-Optiz et al. 2001), Iran (Samadi et al. 2011), China (Wong and Hui 2008), Oman (Al-Farsi et al. 2011), Venezuela (Montiel-Nava and Pena 2008), Sri Lanka (Perera et al. 2009), and Korea (Kim et al. 2011), among others. Most studies provide prevalence estimates similar to those for the USA, although Kim et al. found more than twice the prevalence of US studies in South Korea. Prevalence studies have used a wide range

than twice the prevalence of US studies in South Korea. Prevalence studies have used a wide range of methods and are therefore difficult to compare to one another. Moreover, autism epidemiologists face the difficult task of reliably defining cases based on information from teacher and parent reports, both of which can be heavily influenced by cultural attitudes about discipline and what kinds of behaviors are age appropriate. Estimates of autism may appear higher in a country with great awareness

are age appropriate. Estimates of autism may appear higher in a country with great awareness among parents, educators, and clinicians and access to services or in which the national government mandates the use of autism as a diagnostic term. In contrast, estimates may be lower in a country with little awareness, few services, and lack of systematic surveillance through research or administrative means. In the USA, for example, school records of autism grew tremendously following the 1991–1992

means. In the USA, for example, school records of autism grew tremendously following the 1991–1992 school year when the U.S. Department of Education first introduced these terms to the American public school system (Newschaffer et al. 2005). Research on the prevalence of ASD among children of immigrants dates back more than 20 years. These studies have hypothesized a range of possible explanations for what appears to be higher rates in these children, including vulnerability to intrauterine

for what appears to be higher rates in these children, including vulnerability to intrauterine infections and vitamin deficiencies, among others (Dealberto 2011; Gillberg et al. 1987, 1991, 1995; Narayan et al. 1992). Conclusions from this work are limited by small sample sizes. While some researchers believe they do not support an association, others note that maternal birth abroad represents at least a marginal increase in risk of having a child with ASD (Gardener et al. 2009). Recent work

at least a marginal increase in risk of having a child with ASD (Gardener et al. 2009). Recent work from the UK found a significant association of risk for immigrant mothers, particularly from the Caribbean (Keen et al. 2010). Similarly, data from the 3–4-year-olds in the Somali community in the US city of Minneapolis found the prevalence of ASD to be as much as seven times higher for Somali children than for non-Somali children, although this ratio was observed to decrease dramatically over

than for non-Somali children, although this ratio was observed to decrease dramatically over time (Minnesota Department of Public Health 2009).

Diagnostic Processes Although researchers may use standardized assessments and criteria – at the very least, The Diagnostic Statistical Manual of Mental Disorders (DSM) and The International Classification of Diseases (ICD) – to determine whether an individual constitutes a “case” of autism, most physicians and psychologists are not integrated into a research community and are likely to rely on past training and personal clinical experience. Even with standardized criteria, considerable

on past training and personal clinical experience. Even with standardized criteria, considerable subjectivity and differences in clinical assessments exist because the diagnosis depends on patient or caretaker narrative combined with behavioral observation rather than biological tests. Research in India (Daley and Sigman 2002), Pakistan (Rahbar et al. 2011), and Nigeria (Bakare et al. 2009) shows that professionals can hold different beliefs about the criteria that are important for diagnosis

that professionals can hold different beliefs about the criteria that are important for diagnosis of autism, and many have never even heard of the disorder. In South Korea, children that American clinicians might diagnose with autism are often diagnosed with reactive attachment disorder (RAD), pejoratively referred to as “lack of love” (aejǒng kyǒlpip), a term that parallels the older American concept of the “refrigerator mother.”

Cross-cultural variations in diagnostic practices for autism have been found, even among communities whose scientific traditions are often assumed to be similar, such as the USA and western European countries. For example, in the USA, the American Psychiatric Association removed autism from the category of “psychosis” in 1980, but the French child psychiatric establishment, which uses its own indigenous manual of mental disorders, the Classification Française des Troubles Mentaux de l'Enfant et

manual of mental disorders, the Classification Française des Troubles Mentaux de l'Enfant et de l'Adolescent (CFTMEA), classified autism as a psychosis until 2004. French health professionals also conceptualize the etiology of autism differently from other European countries and consider the American classification of pervasive developmental disorders (PDDs) to be a product of Anglo-American culture. Since French health professionals generally view autism as a problem that lies within family

Since French health professionals generally view autism as a problem that lies within family social relationships and with the mother-child relationship in particular, there are only a few psychiatric or medical centers with expertise on autism as a genetic or brain disorder.

Clinicians may not make or record a particular diagnosis, and parents will not seek it, unless the diagnostic term is meaningful and in current use. For example, one report of the Navajo Indians of the American Southwest notes that autism is char- acterized as “perpetual childhood” (Connors and Donnellan 1995), and through the mid-1990s in India, it was not uncommon for clinicians to refer to children with autism as paagol, the Hindi word for madness (Daley 2004). In rural South Korea, the

children with autism as paagol, the Hindi word for madness (Daley 2004). In rural South Korea, the catch-all “brain disorder” can be used for children with disorders including traumatic brain injury, autism, epilepsy, speech and language disorders, Down syndrome, and other clearly genetic disorders. In addition, many parents in South Korea prefer a RAD diagnosis to autism because (1) it is believed to be a temporary condition treatable by giving love and affection; (2) by blaming the mother,

to be a temporary condition treatable by giving love and affection; (2) by blaming the mother, blame is deflected away from the larger family, including the lineage and lineage ancestors; and (3) the diagnosis makes sense in South Korea’s changing social context, which includes the recent integration of mothers into the work force, thereby altering family life and child care and justifying concern about mothers’ attachment to their young children (Grinker 2007).

It is not clear whether diagnostic tools are sensitive to cultural differences, and while many autism screening and diagnostic tools may demonstrate satisfactory properties, they should not be assumed to have applicability in a given culture without some level of validation. Items may need to be tailored to language impairment as it is defined in particular languages and cultures. For example, the Modified Checklist for Autism in Toddlers (M-CHAT) has been translated into more than 40 languages

Modified Checklist for Autism in Toddlers (M-CHAT) has been translated into more than 40 languages and tested in a number of countries, including China, India, Sri Lanka, Egypt, Kuwait, Jordan, Oman, Qatar, Saudi Arabia, Syria, Tunisia, and Lebanon. While used in many countries, careful validation is not always completed. In at least one location – Sri Lanka – the tool demonstrated unacceptably low specificity (Perera et al. 2009). The authors site both a lack of cultural relevance of some items,

specificity (Perera et al. 2009). The authors site both a lack of cultural relevance of some items, as well as a consistent pattern in which social and communication impairments were not viewed as an abnormality by the mothers. A “symptom” such as poor eye gaze in a 2-year-old may be seen as an impairment in one society but politeness in another. Language is another example of the need to consider cultural practices and norms. For example, while a commonly reported impairment associated with

cultural practices and norms. For example, while a commonly reported impairment associated with autism among English speakers is pronominal reversal, it occurs rarely in languages, such as Korean and Javanese, in which pronouns are seldom used. Many East Asian languages use honorifics to denote the status of the speakers in particular conversations and settings, so the inappropriate use of honorifics is an indicator of deficiencies in an individual’s ability to understand the pragmatics of

honorifics is an indicator of deficiencies in an individual’s ability to understand the pragmatics of shifting referents and social context.

Within the USA, race, ethnicity, and socioeconomic status all play a role in which children are identified as having autism. Mandell et al. (2002) found that African-American children subsequently diagnosed with autism are at least 2.5 times less likely to receive a diagnosis at their first specialty visit than a white child with autism. Work by Jarquin et al. (2011) found that non-Hispanic Black children receive only the most severe diagnosis of ASD, in contrast to non-Hispanic White children

children receive only the most severe diagnosis of ASD, in contrast to non-Hispanic White children who receive diagnosis at all levels of severity. Using data collected from states on the number of children eligible for special education services under the category of autism, Morrier et al. (2010) found significant underrepresentation for Hispanic children in 95% of US states. Travers et al. (2011) were able to document that this particular finding has persisted between 1998 and 2006, while the

were able to document that this particular finding has persisted between 1998 and 2006, while the likelihood of eligibility based on ASD varied across time for other minority groups. Educational eligibility is clearly not equivalent to diagnosis, although these findings are consistent with the recommendation by Mandell and Novak (2005) to conduct research on “the complex relationship between culture and treatment, focusing on cultural differences in the behavioral phenotype of ASD, recognition of

and treatment, focusing on cultural differences in the behavioral phenotype of ASD, recognition of symptoms, interpretation of symptoms, families’ decisions regarding medical and educational interventions, and interactions between families and the healthcare system” (2005, p. 114).

It must be emphasized that cultural variables, such as local conceptions of the normal and abnormal, stigma, and attitudes about disclosure, cannot be easily measured, in large part because there are so many cross-cultural differences in the norms of child rearing. The use of qualitative ethnographic methods, such as cultural consensus analyses, provides systematic data on attitudes toward health and illness that can be quantified and converted into schematic models of shared beliefs (Romney et

and illness that can be quantified and converted into schematic models of shared beliefs (Romney et al. 1986). Researchers can then quantify levels of agreement among informants and identify both shared cultural categories as well as intercultural differences. Every geographic location and community may demand different methods and types of description. An ethnographic study of help-seeking for ASD in the USA would likely focus primarily on the relationship between parents and health care

for ASD in the USA would likely focus primarily on the relationship between parents and health care providers, while the same study in Kenya would likely focus on an extended-family disease management group and how the family negotiates a plurality of coexisting medical and religious systems. In other words, although autism appears to be universal, the contexts in which it occurs are distinctive.

Treatment The availability of providers and clinical services that are specific to ASD remains one of largest challenges in most countries in the world. Intervention programs for children with ASD have largely developed under conditions that are both culturally inconsistent and economically unten- able for most low- and middle-income countries. Indeed, researchers must also be aware of the cultural fit of many interventions, especially for minority groups within the USA. One intervention

cultural fit of many interventions, especially for minority groups within the USA. One intervention approach that is well known for its adaptability in a number of different countries is treatment and education of autistic and communication-related handicapped children or TEACCH (Schopler and Mesibov 2000), a training, services, and research program that has been implemented in a wide range of countries, including Australia, Brazil, Cambodia, Denmark, Iceland, Italy, Germany, Greece, India,

countries, including Australia, Brazil, Cambodia, Denmark, Iceland, Italy, Germany, Greece, India, Israel, Japan, Kuwait, Mexico, New Zealand, the Netherlands, Republic of Ireland, South Africa, Spain, Sweden, UK, Venezuela, and Vietnam. The flexibility to create new materials and the ability to apply the general principles of the program have likely contributed to its successful adaptation. School- or classroom-based interventions are only effective, however, if children with ASD attend school.

or classroom-based interventions are only effective, however, if children with ASD attend school. Many children with ASD and other disabilities simply do not attend school at all. Estimates by the United Nations Children’s Fund (UNICEF) and the United Nations Educational Scientific and Cultural Organization (UNESCO) place the percentage of children with disabilities living in developing countries who receive a basic primary education to be between 1% and 5%. In these countries, school-based

who receive a basic primary education to be between 1% and 5%. In these countries, school-based opportunities are limited primarily to the urban areas, and even in these situations, children with autism are typically in settings where professionals have little knowledge about effective practices specifically for children with ASD. In Ghana, for example, classrooms were described as “crowded, loud, and unpredictable” and “transitions between activities generally occurred without warning, after

and unpredictable” and “transitions between activities generally occurred without warning, after inconsistent durations and at varying times of the day” (Anthony 2009, p. 9), conditions which are both typical in most low- and middle-income countries and also challenging for many children with ASD. In the absence of laws and regulations that provide services, parents of children with ASD may engage in a high level of help-seeking and may use a combination of local healers, indigenous systems of

in a high level of help-seeking and may use a combination of local healers, indigenous systems of medicine, medication, and Western treatments for ASD. In China, for example (Clark and Zhou 2005), there is wide use of sensory integration therapies in addition to applied behavioral analysis (ABA). In India, families have long relied on both special education and traditional healing systems, such as the use of Ayurvedic and homeopathic medicine (Daley 2002). They now also seek treatments for

as the use of Ayurvedic and homeopathic medicine (Daley 2002). They now also seek treatments for their children that include hyperbaric oxygen chambers, stem-cell replacement, Defeat Autism Now (DAN) diets, auditory integrated therapy, and many others. Of course, such options are not available to most families and in most countries, regardless of whether they are effective. As is true for families throughout the world, parents in Taiwan reported a willingness to try anything that might work,

throughout the world, parents in Taiwan reported a willingness to try anything that might work, from fortune tellers to vitamin supplements (Shyu et al. 2010).

Family Functioning Just as the impact of a child with autism on the family varies widely within cultures, it also varies considerably across cultures. In many countries,

having a child with a disability of any type is made even more challenging as a result of the stigma associated with such a difference. Stigma is gen- erally defined as a form of branding of an individ- ual in which a community devalues his or her social identity. In Korea, for example, despite dramatic changes in autism awareness in all seg- ments of society, autism (chap’ae) continues to be a highly undesirable disability, and the diagnosis is believed to be applicable primarily to children

highly undesirable disability, and the diagnosis is believed to be applicable primarily to children and adults with profound intellectual impair- ments. Other cultures provide pathways that min- imize stigma. In India, the recent positive portrayal of people with ASD on television and in films, even if inaccurate, has opened dialogue about disability and has provided a point of cul- tural reference, and in some cases, pride (Singhal 2010). In the USA, many people who have both ASD and

reference, and in some cases, pride (Singhal 2010). In the USA, many people who have both ASD and above-average intelligence, while fac- ing social challenges, still find gainful employ- ment in the fields of engineering, computers, or mathematics. Within North America and Europe, the par- enting experience of minority groups can involve additional challenges as a result of cul- tural differences. Kediye et al. (2009) described challenges faced by Somali parents, such as the language barrier in

Kediye et al. (2009) described challenges faced by Somali parents, such as the language barrier in communicating with key pro- fessionals; a perception of racism and being judged; misguided advice from the general pub- lic who assume poor parenting; and a sense of estrangement in the absence of extended family. However, it is important to recognize the wide variability in experiences across minority groups. For example, Magaña and Smith (2006) found that Latina mothers of children with ASD had

groups. For example, Magaña and Smith (2006) found that Latina mothers of children with ASD had significantly better overall well-being than their non-Latina counterparts and reported strik- ing differences in the degree to which Latina mothers held more positive beliefs about their children.  Future Directions The understanding of autism can only gain by further examination of autism both across and within cultures. Careful attention to observed sim- ilarities and differences will help

across and within cultures. Careful attention to observed sim- ilarities and differences will help researchers and clinicians better understand the disorder as well as better design and develop interventions that are applicable to families of all backgrounds. Some specific potential areas for future work include the following areas: *   As immigration patterns continue to shift with political changes in every corner of the globe, researchers are presented with continually changing options for

in every corner of the globe, researchers are presented with continually changing options for investigation of immigra- tion and prevalence of ASD. *   Pediatricians and primary health care workers are in need of simple, reliable methods of iden- tifying ASD that do not require extensive train- ing. More research on the validity of diagnostic tools cross-culturally is needed to equip these professionals with the instruments they need to accurately diagnose ASD. *   The dramatic gap in

professionals with the instruments they need to accurately diagnose ASD. *   The dramatic gap in appropriate intervention options for the majority of children in the world with ASD suggests the need for researchers to work closely with professionals on the ground to develop intervention approaches that are cost-effective, feasible, and culturally relevant. *   Relatively little research has examined whether there are differences in symptom expression across cultures. Genetic studies are

examined whether there are differences in symptom expression across cultures. Genetic studies are underway in many non-Western countries, which will allow much greater understanding of how genetic heterogeneity and culture interact to influence the presentation of ASD.  See Also *   Epidemiology *   M-CHAT *   Prevalence *   TEACCH Transition Assessment Profile (TTAP)  Curriculum Louise Spear-Swerling Southern Connecticut State University, New Haven, CT, USA  Definition Broadly defined, a

Southern Connecticut State University, New Haven, CT, USA  Definition Broadly defined, a curriculum is the set of courses, including the specific course content and sequence of topics, taught in schools. The term core curriculum refers to the set of courses and content typically required of all students in a school. In K-12 education, core curriculum would usually include reading, writing, mathe- matics, science, and social studies, as well as the arts and physical education. Additionally, the

matics, science, and social studies, as well as the arts and physical education. Additionally, the term curriculum sometimes is applied within a partic- ular domain (e.g., the reading curriculum or the math curriculum). Curricula within a particular domain include specific subtopics or component areas, with some sequencing of subtopics and skills. For instance, a reading curriculum in the primary grades (K-3) should address component areas such as phonemic awareness, phonics, fluency, vocabulary,

(K-3) should address component areas such as phonemic awareness, phonics, fluency, vocabulary, and comprehension; within a component area, the curriculum would address easier skills before more difficult ones. In the area of phonics, for example, children would be taught to read simple, one-syllable words before two-syllable words, and two-syllable words before complex multisyllabic words. The term curriculum is not synonymous with instructional program. A curriculum could be implemented through

curriculum is not synonymous with instructional program. A curriculum could be implemented through the use of one particular instructional program or set of programs, but it could also be implemented through instructional activities developed by teachers or schools.  Historical Background Some countries, such as the United Kingdom, have a national curriculum which standardizes specific course content by grade. Although the United States has no national curriculum, virtually all states have their

by grade. Although the United States has no national curriculum, virtually all states have their own standards for important academic domains such as mathematics or read- ing. These state standards provide some guidance to local school districts about what state education officials view as important content for each grade level, K-12. Professional organizations and schol- arly panels (e.g., the National Early Literacy Panel, the National Math Advisory Panel) also provide guidance to educators

National Early Literacy Panel, the National Math Advisory Panel) also provide guidance to educators regarding impor- tant curriculum content. Nevertheless, K-12 cur- ricula can vary substantially from one state to the next or even within a state, across districts, mean- ing that curricular expectations for children at a particular grade level also can vary substantially.  Future Directions The Common Core State Standards Initiative (www.corestandards.org), a state-led effort coor- dinated by

Common Core State Standards Initiative (www.corestandards.org), a state-led effort coor- dinated by the National Governors Association Center for Best Practices (NGA Center) and the Council of Chief State School Officers (CCSSO), has outlined evidence-based standards by grade level for K-12 English/language arts and mathe- matics. States choosing to adopt these standards would be addressing similar skills and content in their core curricula, which might lead to more consistency across and within

skills and content in their core curricula, which might lead to more consistency across and within states in expecta- tions for students in each grade.  See Also *   Reading *   Written Language  Custodial Grandparents of Children with Autism Spectrum Disorder Jennifer Hillman1 and Connie Anderson2 1Applied Psychology Program, The Pennsylvania State University, Berks College, Reading, PA, USA 2Post-Baccalaureate Certificate Program in Autism Studies, College of Health Professions, Towson

USA 2Post-Baccalaureate Certificate Program in Autism Studies, College of Health Professions, Towson University, Towson, MD, USA  Definition Custodial grandparents of children with autism spectrum disorder (ASD) serve as head of their household; assume primary responsibility for at least one biological, adoptive, or step-grandchild diagnosed with ASD; and may or may not have their caregiving responsibilities recognized via legal adoption, guardianship, or formal custody arrangements. Families

recognized via legal adoption, guardianship, or formal custody arrangements. Families comprised of custodial grandparents and their grandchildren are called grandfamilies, kin care, custodial, and skip- generation families.  Historical Background Research on custodial grandparents of children with ASD was predicated by general studies of US grandparents who lived in the same household as their grandchildren. Although the Census Bureau began to gather data on grandparents who lived in the same

Although the Census Bureau began to gather data on grandparents who lived in the same household as their grandchildren in the 1970s, a lack of data regarding the individual characteristics of those grandchildren, coupled with multiple changes in autism’s diagnostic nomencla- ture, has made it difficult, if not impossible, to discern the number of custodial grandparents tak- ing care of a child with ASD. In 1970, the US Census Bureau reported that 2.2 million grandparents lived in the same house-

ASD. In 1970, the US Census Bureau reported that 2.2 million grandparents lived in the same house- hold with a grandchild, but it was not possible to determine if those grandparents served as primary caregiver for their grandchild or if they co-resided with additional members of the child’s family including the child’s parent or parents. Over the next few decades, increasing numbers of grandpar- ents “lived under the same roof” as their grandchildren; by 1997 more than 3.9 million grandparents

ents “lived under the same roof” as their grandchildren; by 1997 more than 3.9 million grandparents lived with a grandchild (see Hayslip and Kaminski 2005). Meanwhile, while the 1994 Diagnostic and Statistical Manual of Mental Disor- ders (DSM), 4th edition, identified childhood autism as a developmental disorder that included individual diagnoses of Asperger’s disorder, PDD- NOS, autism, childhood disintegrative disorder, and Rett syndrome, the Census Bureau did not collect enough data to

disintegrative disorder, and Rett syndrome, the Census Bureau did not collect enough data to determine how many of those 3.9 million grandparents served as custodial, versus co-resident, grandparents, much less custodial grandparents of a child with autism (i.e., ASD). By the turn of the century, the Census Bureau (1999) collected data that allowed for the identification of custodial, as well as co-resident, grandparents and reported that of the 4.6 million US grandparents who co-resided with a

grandparents and reported that of the 4.6 million US grandparents who co-resided with a grand- child, 1.3 million of them served as custodial grandparents. These custodial, compared to co-resident, grandparents were also more likely to be grandmothers, to live in poverty, and to not have health insurance for their grandchild (1999). When the DSM-5 (APA) introduced ASD as an umbrella diagnosis for autism in 2013, it was still not possible to obtain a population count of cus- todial grandparents

autism in 2013, it was still not possible to obtain a population count of cus- todial grandparents of children with ASD via the Census Bureau, and no formal research studies of custodial grandparents of children with ASD existed in the literature. However, recognized experts in grandparenting like Hayslip began to examine the custodial grandparents of children, in general. A review of this early literature on custo- dial grandparents, in general, revealed five pri- mary themes including the

literature on custo- dial grandparents, in general, revealed five pri- mary themes including the heterogeneity of this population, the personal costs and benefits asso- ciated with assuming this role, the use of various parenting styles, a desire for social support and connection, and a need for essential social and health services (Hayslip and Kaminski 2005).  Current Knowledge It remains impossible to obtain an accurate count of the number of custodial grandparents of chil- dren with ASD in the

to obtain an accurate count of the number of custodial grandparents of chil- dren with ASD in the USA; no governmental or private organizations gather the appropriate data to make that official determination. One can, how- ever, estimate how many grandparents currently serve as custodial grandparents for children with ASD in the USA. The Census Bureau indicates that 2.7 million custodial grandparents in the USA currently provide care for 2.5 million grandchildren (Cancino 2016). When combined

in the USA currently provide care for 2.5 million grandchildren (Cancino 2016). When combined with current prevalence rates of ASD, in which 1 out of 58 US children receive a diagnosis of ASD (Autism and Developmental Disabilities Monitoring Network 2018), 43,103 of those 2.5 million children cared for by custodial grandpar- ents could be estimated to carry an ASD diagno- sis. Because additional census data indicate that custodial grandparents care for grandchildren at a ratio of 1.08

census data indicate that custodial grandparents care for grandchildren at a ratio of 1.08 grandparents to 1 grandchild (Cancino 2016), those 43,103 children diagnosed with ASD would be expected to be cared for by a total of more than 46,500 US custodial grandparents. Our knowledge of the estimated, more than 46,500, custodial grandparents in the USA cur- rently caring for children with ASD remains lim- ited. Important reference groups for the custodial grandparents of children with ASD include

lim- ited. Important reference groups for the custodial grandparents of children with ASD include the parents of children with ASD; the parents of chil- dren with other disabilities and chronic illnesses; the custodial grandparents of children, in general; and the traditional grandparents of children with ASD. A review of these reference groups will provide useful background information and points of comparison for it currently knows about custo- dial grandparents of children with ASD.  The

of comparison for it currently knows about custo- dial grandparents of children with ASD.  The parents of children with ASD serve as an essential reference group for custodial grandpar- ents of children with ASD; the custodial grand- parents of children with ASD, who assume the role of surrogate parent, can be expected to share similar experiences, challenges, and demands (Hillman and Anderson 2019). It also is essential to note that the parents of children with ASD, compared to the parents of

It also is essential to note that the parents of children with ASD, compared to the parents of children with other kinds of chronic illness and disabilities (e.g., hear- ing and vision loss, Down syndrome, cerebral palsy, intellectual disability, and diabetes), expe- rience a variety of unique, additional stressors (see Hillman and Anderson 2019). These stressors include the challenging behavioral and communi- cation problems typically exhibited by children with ASD like elopement, tantrums,

and communi- cation problems typically exhibited by children with ASD like elopement, tantrums, meltdowns, insomnia, sensory sensitivity, stimming (e.g., hand flapping, headbanging), an insistence upon sameness, physical aggression, restricted and unusual interests, restricted food choices, and dif- ficulty with verbal and non-verbal communica- tion. Additional, unique challenges for parents of children with ASD, compared to parents of chil- dren with other chronic disorders and illnesses,

of children with ASD, compared to parents of chil- dren with other chronic disorders and illnesses, include difficulties in obtaining appropriate ASD- related services, transporting their child to a vari- ety of appointments, and obtaining daycare and respite care, social isolation, and the need to spend more time interacting with insurance companies, school personnel, and various agencies to acquire appropriate services (Cidav et al. 2012). Among parents of children with ASD, one parent

to acquire appropriate services (Cidav et al. 2012). Among parents of children with ASD, one parent (typically the mother) often takes on the role of the personal case manager, advocates for the child with ASD, and assumes primary respon- sibility for transportation to ASD-related appoint- ments, management of ASD-related problem behaviors, and before-and-after-school, evening, weekend, holiday, and summer childcare. Because many of these primary caregivers often lose the ability to work a

and summer childcare. Because many of these primary caregivers often lose the ability to work a typical workweek out- side of the home, mothers of children with ASD earn 56% less than mothers of children in general and 35% less than mothers of children diagnosed with other chronic illnesses and disorders (Zuleyha et al. 2012). This decrease in household income only adds to the increased financial bur- den of parents of children with ASD who typically need to cover the cost of ASD-related

bur- den of parents of children with ASD who typically need to cover the cost of ASD-related therapies, medical care, specialized school instruction, sum- mer programs, and day and respite care (Cidav et al. 2012). Parents of children with ASD face additional stressors in their relationships with spouses and partners and often express fear regarding their child’s future, particularly after their own deaths. These parents have expressed, “Who will love and care for my child with ASD after I pass

deaths. These parents have expressed, “Who will love and care for my child with ASD after I pass away? Will my child be able to live independently, or will they be placed in a group home or institution? Who will make sure that they are cared for and not emotionally, physically or financially abused?” This combination of demands in care- giving, challenges with ASD-related problem behaviors and lost wages can lead parents of chil- dren with ASD to experience social isolation, anxiety, and

and lost wages can lead parents of chil- dren with ASD to experience social isolation, anxiety, and depression (Dyches et al. 2016). It can be expected that the custodial grandparents of children with ASD would have a similar experience.  Another essential reference group for custodial grandparents of children with ASD is that of cus- todial grandparents of children, in general. In terms of providing long-term social benefits, cus- todial grandparents of all children prevent those children from

long-term social benefits, cus- todial grandparents of all children prevent those children from entering an already typically underfunded, overworked, and insufficient foster care system (Hayslip et al. 2019). Despite provid- ing this essential social service, however, research suggests that custodial grandparents of children, overall, represent a disproportionate number of minority group members and are subject to a variety of challenges and stressors. For example, custodial grandparents often

and are subject to a variety of challenges and stressors. For example, custodial grandparents often assume their role in response to a crisis related to a parent’s divorce, death, incarceration, mental or physical illness, military deployment, substance abuse (e.g., increasingly frequent opioid use), or participation in child abuse and neglect (Hayslip et al. 2019). Custodial grandparents of children, overall, are also more likely to be African American, Latino, and grandmothers (Hayslip et al.

overall, are also more likely to be African American, Latino, and grandmothers (Hayslip et al. 2019) living on a fixed income with a chronic illness (or mental or physical disability) and with less formal education (Muthiah et al. 2018) when compared to both partnered and single parents of children, in general. Custodial grandparents of children, in general, also report feeling guilt, shame, insecurity, sad- ness, and frustration (Muthiah et al. 2018) within the context of their role, as well as

sad- ness, and frustration (Muthiah et al. 2018) within the context of their role, as well as anxiety and depression (Hayslip et al. 2019). This negative effect may arise from stressors including the crisis that led up to their caregiving, ambiguity about their role as grandparent versus parent, uncer- tainly about their parenting skills, a loss of inde- pendence and privacy, increased conflict with their partner or spouse, and increased spending for their grandchild’s food, clothing, and other

their partner or spouse, and increased spending for their grandchild’s food, clothing, and other basic needs, challenges in finding same-age cus- todial peers, and a grandchild’s problem behavior. However, custodial grandparents of children, in general (Hayslip et al. 2019), also appear to dem- onstrate resilience, and they have responded well to small group intervention.  Understanding the experience of traditional, versus custodial, grandparents of children with ASD offers another point of

of traditional, versus custodial, grandparents of children with ASD offers another point of comparison. Based upon the largest national survey of traditional grandparents of children with ASD to date, more than 1800 grandparents of children with ASD who responded provided both emotional and instrumental support to the parents of their grandchildren with ASD (Hillman et al. 2016). Specifically, traditional grandparents of children with ASD reported that they often provide childcare so that a

traditional grandparents of children with ASD reported that they often provide childcare so that a parent can work outside the home, respite care, transportation to and from ASD-related appointments, advocacy and assis- tance in dealing with school personnel and insur- ance agencies, and significant financial support well beyond paying for essentials like food and clothing. To provide this financial support, many of these grandparents made significant personal sacrifices and put off their

financial support, many of these grandparents made significant personal sacrifices and put off their retirement, went back to work after they had been retired or partially retired, raided their retirement and other savings accounts, and even moved in with, or closer to, their grandchild with ASD. Findings also indi- cated that traditional grandmothers of children with ASD were more likely to provide emotional and instrumental support, while traditional grand- fathers of children with ASD were more

emotional and instrumental support, while traditional grand- fathers of children with ASD were more likely to provide financial support. Additional, qualitative analyses of the responses of more than 1800 traditional grandpar- ents of a child with ASD regarding their first- person experience (Hillman et al. 2017) revealed that these grandparents experienced joys as well as challenges in their relationship with their grandchild with ASD. Specifically, these tradi- tional grandparents enjoyed having

with their grandchild with ASD. Specifically, these tradi- tional grandparents enjoyed having a special rela- tionship with their grandchild, which often transcended their grandchild’s inability to com- municate via spoken language. However, this spe- cial relationship was often tempered by ASD- related behavior problems like tantrums, melt- downs, elopement, aggressive behavior, and the desire to communicate verbally with a non-verbal grandchild. A central finding was that despite these

to communicate verbally with a non-verbal grandchild. A central finding was that despite these challenges, these traditional grandparents of children with ASD typically reported that they found solace and joy in celebrating every bit of progress that their grandchild made, no matter how small (Hillman et al. 2017). Additional themes identified by these traditional grandpar- ents of children with ASD included a newly dis- covered ability to love their grandchild unconditionally and the value they

included a newly dis- covered ability to love their grandchild unconditionally and the value they typically found by engaging in ASD-related advocacy. Additional qualitative findings (Prendeville and Kinsella 2019) indicate that although traditional grandparents of children with ASD also experi- ence regret losing some of their personal freedom when they commit to helping with their grand- child’s daily care, they knew they provided an invaluable service. Unlike the parents of children with ASD,

daily care, they knew they provided an invaluable service. Unlike the parents of children with ASD, however, the traditional grandparents of children with ASD (Hillman et al. 2017; Pre- ndeville and Kinsella 2019) appear to experience a “double dose” of worry and fear in which they express significant fear and anxiety about both the future of their grandchild with ASD and their grandchild’s parents, which increased when they thought about becoming too sick or frail to help or passing away.

which increased when they thought about becoming too sick or frail to help or passing away.  Although limited, the research available regarding custodial grandparents of children with ASD is drawn primarily from qualitative studies (e.g., Hillman and Anderson 2019). Find- ings suggest that, like traditional grandparents of children with ASD, the custodial grandparents of a child with ASD experience both challenges and joys in their dual, and often conflicting, role as grandparent and surrogate

both challenges and joys in their dual, and often conflicting, role as grandparent and surrogate parent. Specifically, custodial grandparents of children with ASD reported that problematic issues with their grandchildren’s parents (i.e., their adult child and/or their adult child’s partner) serve as one of their greatest challenges. Challenges include deal- ing with the original crisis that led to them assum- ing their role as primary caregiver, obtaining legal custody of their grandchild with

them assum- ing their role as primary caregiver, obtaining legal custody of their grandchild with ASD, and con- flicts that often arose during visitation with the child’s parent or parents. The custodial grandpar- ents of children with ASD also reported that care- giver burden, including 24/7 demands, challenging ASD-related problem behaviors like tantrums and eloping, insufficient ASD-related services, increasing financial demands, social iso- lation, and related fears for their grandchild’s

services, increasing financial demands, social iso- lation, and related fears for their grandchild’s future, represented another significant challenge. However, custodial grandparents of children with ASD also report that they experience joy and positivity in their role (e.g., Hillman and Anderson 2019). Sources of joy include learning to love unconditionally; to celebrate each time their grandchild with ASD made progress, no matter how small or incremental; to focus on the positive; and to draw

with ASD made progress, no matter how small or incremental; to focus on the positive; and to draw upon their religious and moral beliefs (e.g., my grandchild is a gift from God, and taking care of him is the right thing to do) during difficult times. Custodial grandparents of children with ASD also report developing wisdom as a function of their role, including the acknowledgment that it really does “take a vil- lage” including friends, teachers, and various pro- fessionals to raise a child with

“take a vil- lage” including friends, teachers, and various pro- fessionals to raise a child with ASD and the importance of advocacy and education about ASD for their both own grandchild and for society as a whole.  In sum, research suggests that custodial grand- parents of children with ASD face significant stressors and burden, above and beyond those of parents of children with ASD, caregivers of chil- dren with other chronic illnesses and disabilities, custodial grandparents of children

of chil- dren with other chronic illnesses and disabilities, custodial grandparents of children overall, and traditional grandparents of children with ASD. The custodial grandparents of children with ASD often face additional struggles with living on a fixed or limited income, feeling conflicted about their dual role as parent and grandparent, having few peers, having their own health prob- lems, experiencing a “double dose” of worry for both their grandchild with ASD and their grand- child’s

experiencing a “double dose” of worry for both their grandchild with ASD and their grand- child’s parents, and not having their own grand- parents to help them with finances or respite care.  Custodial Grandparents of Children with Autism Spectrum Disorder, Table 1 Websites for custodial grandparents of children with ASD

| Website Name | URL | |:-----------------------------------------------------|:-------------------------------------------------------------------------------------------------------------------------------------------------------------|
| AARP, Raising Grandchildren: Finances | https://www.aarp.org/relationships/friends-family/info-08-2011/grandfamilies-guide-finances.html |
| Asperger/Autism Network, How to Handle Meltdowns | https://www.aane.org/how-to-handle-meltdowns/ |

| Autism Speaks, A Grandparent’s Guide to Autism | https://www.autismspeaks.org/tool-kit/grandparents-guide-autism |
| CAR Autism Roadmap, The Children’s Hospital of Philadelphia Research Institute | https://www.carautismroadmap.org/resources/ |
| Generations United, Grandfamilies | https://www.gu.org/explore-our-topics/grandfamilies/ |

| Generations United, Grandfamilies | https://www.gu.org/explore-our-topics/grandfamilies/ |
| Grandparent Autism Network | https://ganinfo.org/ | | Grandparents Raising Grandchildren | https://www.helpguide.org/articles/parenting-family/grandparents-raising-grandchildren.htm |
| National Resources for Grandfamilies, Grandfamilies | http://www.grandfamilies.org/ |

| National Resources for Grandfamilies, Grandfamilies | http://www.grandfamilies.org/ |
| Protections and Advocacy Systems, Inc. | https://www.wypanda.com/ | | Understood, When Grandparents Are Caregivers or Guardians of Kids With Learning and Attention Issues | https://www.understood.org/en/family/managing-everyday-challenges/issues-with-caregivers-babysitters/when-grandparents-are-caregivers-or-guardians-of-kids-with-learning-and-attention-issues |

Future Directions Significant gaps in the literature regarding custo- dial grandparents of children with ASD will be identified here in the hope that they could be addressed with future research, practice, and pol- icy changes. For example, it would be helpful to obtain an accurate count of the custodial grand- parents of children with ASD in the USA and around the world, including their demographic characteristics. Because most research regarding the custodial grandparents of children with ASD

characteristics. Because most research regarding the custodial grandparents of children with ASD available has been conducted with convenience samples, snowball sampling, and primarily US, White, well-educated custodial grandparents, research derived from nationally representative samples would be ideal. Consistent with calls to acknowledge the heterogeneity of custodial grandparents of children, in general (Hayslip et al. 2019), it also remains essential to acknowl- edge the heterogeneity of

in general (Hayslip et al. 2019), it also remains essential to acknowl- edge the heterogeneity of custodial grandparents of children with ASD. Additional research can focus upon the experience and needs of custodial grandparents of children with ASD from various understudied and likely underserved groups including immigrants, LGBT adults, and African American, Alaskan Native, American Indian, Asian, Latino, Middle Eastern, and Pacific Islander adults.  Longitudinal studies of custodial

Asian, Latino, Middle Eastern, and Pacific Islander adults.  Longitudinal studies of custodial grandparents of children with ASD are needed, and both quan- titative and qualitative approaches to research should be valued. Consistent with current research on custodial grandparents (Hayslip et al. 2019) of children with ASD (Hillman and Anderson 2019), future investigations should continue to examine and highlight custodial grandparents’ resilience, wisdom, and other personal strengths, as well as

and highlight custodial grandparents’ resilience, wisdom, and other personal strengths, as well as their significant challenges. Future research should also investigate the extent to which custo- dial grandparents of children with ASD might use alcohol and other substances for coping, be phys- ically abused or injured by their grandchild with ASD, and engage in child abuse, themselves. Because societal attitudes toward grandparents who serve as primary caregiver for their grandchildren have

societal attitudes toward grandparents who serve as primary caregiver for their grandchildren have traditionally been negative (see Hayslip et al. 2019), it would be helpful to examine the attitudes maintained among case managers, teachers and other school personnel, judges and attorneys, daycare providers, and other individuals who might work with custodial grandparents of children with ASD. It also would be helpful to examine the extent to which custo- dial grandparents, versus parents, of a

also would be helpful to examine the extent to which custo- dial grandparents, versus parents, of a child with ASD approach that child’s transition to adulthood including their pursuit of job skills, higher educa- tion, and options for group and independent living outside the family home. In terms of policy and practice, a variety of recommendations can be offered to help address the needs of custodial grandparents of children with ASD (e.g., Hillman et al. 2019). Because these grandparents

custodial grandparents of children with ASD (e.g., Hillman et al. 2019). Because these grandparents have identified problems with establishing legal custody of their grandchild with ASD, as well as managing parental contact and behavior during visitation, legal advocates and care providers can offer edu- cation and assistance in relation to legal custody, guardianship, visitation rights, permissive visi- tation, and supervised visitation, which can vary significantly by state. Individual states

visi- tation, and supervised visitation, which can vary significantly by state. Individual states can spon- sor and promote kinship navigators, profes- sionals trained specifically to connect custodial grandparents with state and local ASD- and custody-related resources including legal advo- cates in family and tax law. For example, many custodial grandparents of children with ASD may not know that they qualify for kinship guardianship payments, foster care payments, or state-supported child

that they qualify for kinship guardianship payments, foster care payments, or state-supported child health insurance, much less how to apply for those benefits.  Because custodial grandparents have expressed signifi- cant fears about who will take care of their grandchild after their death (Hillman et al. 2019), these grandparents can be directed to local, state, and national resources that assist in long-term care planning; the creation of a special needs trust and various custodial accounts can

long-term care planning; the creation of a special needs trust and various custodial accounts can help ensure the quality of a child’s life with ASD long after a custodial grandparent passes away. Intergenerational programming for custodial grandparents and their grandchild with ASD could also be offered by local Area Agencies on Aging (e.g., senior centers) and Title VI Native American aging programs, perhaps in conjunction with professionals and student trainees from local colleges and

programs, perhaps in conjunction with professionals and student trainees from local colleges and universities. Such intergenerational programming could introduce these custodial grandparents to everything from case manage- ment services, legal advocacy for custody and estate planning, the National Family Caregivers Support Program, management of ASD-related problem behaviors, nutrition and feeding services, financial support (e.g., potential kinship care grants, Supplemental Security Income),

services, financial support (e.g., potential kinship care grants, Supplemental Security Income), and in-person and online peer support groups, to state supported respite care and transportation services when available. Ideally, such intergenerational programs would feature simul- taneous programming for the grandparents’ chil- dren with ASD including childcare, social skills training, music and art therapy, and other activities and services.  Addressing the challenges faced by custodial

and art therapy, and other activities and services.  Addressing the challenges faced by custodial grandparents of children with ASD, while supporting their resilience and benefitting from their wisdom, appears essential.  See Also *   Advocacy *   Applied Behavior Analysis (ABA) *   Asperger Syndrome *   Autism Speaks *   Behavior *   Challenging Behavior *   Child Abuse in Autism *   Court Decision (ASD Related) *   Developmental Disabilities *   Disability *   Estate Planning *   Family Burden

(ASD Related) *   Developmental Disabilities *   Disability *   Estate Planning *   Family Burden *   Family Therapy *   Guardianship *   Health Disparities *   Maladaptive Behavior *   Pervasive Developmental Disorder Not Other- wise Specified *   Qualitative Versus Quantitative Approaches *   Related Services *   Respite Care *   Self-Care *   Support Trust *   Team Approach  Daily Living Skills Aaron Stabel The M.I.N.D. Institute, University of California Davis Medical Center, Sacramento, CA,

Aaron Stabel The M.I.N.D. Institute, University of California Davis Medical Center, Sacramento, CA, USA  Synonyms Activities of daily living; Daily self-care activi- ties; Home living skills; Self-care; Self-help  Definition The term “daily living skills” refers to a wide range of personal self-care activities across home, school, work, and community settings. Most daily living skills, like food preparation and personal hygiene, need to be performed on a regular basis to maintain a reasonable

preparation and personal hygiene, need to be performed on a regular basis to maintain a reasonable level of health and safety. Adaptive functioning, or an individual’s ability to care for self and function independently, is a primary consideration when supporting individuals with autism and other disabilities. Daily living skill activities include: *   Personal hy_giene and grooming *   Dressing and undressing *   Meal preparation and feeding *   Mobility and transfer *   Toileting *

and undressing *   Meal preparation and feeding *   Mobility and transfer *   Toileting *   Housekeeping *   Laundry *   Home safety *   Health and medication management *   Leisure time and recreation Children’s abilities to care for themselves have been found to correlate with intellectual function- ing and may be a strong predictor of future inde- pendence (Carter et al. 1996). Individuals who cannot independently carry out these necessary self-help routines are at greater risk for long-

who cannot independently carry out these necessary self-help routines are at greater risk for long- term institutionalization, require more intensive living supports, and are less likely to be employed (Wehman and Targett, 2004). Assessing adaptive functioning is required when measuring intelli- gence, diagnosing intellectual disability, and determining appropriate treatment goals (Goodlin-Jones and Solomon 2003). The most widely used instrument to assess adaptive behav- ior functioning is the

and Solomon 2003). The most widely used instrument to assess adaptive behav- ior functioning is the Vineland Adaptive Behavior Scales (Sparrowet al. 1984). Selecting skills to teach should focus on the priority tasks required for independent domestic and community living (Wehman and Targett 2004; National Research Council 2001). Daily living skills are usually taught using strategies from applied behavior analysis, specifically task analysis, shaping, chaining, and positive reinforcement.

behavior analysis, specifically task analysis, shaping, chaining, and positive reinforcement. Teaching individuals with autism to generalize learned tasks across settings, people, and materials remains an important aspect of intervention plan- ning when teaching daily living skills.  See Also *   Adaptive Behavior *   Adaptive Behavior Scales *   Chaining *   Functional Assessment and Curriculum for Teaching Everyday Routines *   Functional Life Skills *   Independent Living *   Positive

for Teaching Everyday Routines *   Functional Life Skills *   Independent Living *   Positive Reinforcement *   Task Analysis *   Vineland Adaptive Behavior Scales (VABS)  Daily Routines Kimberly Kroeger-Geoppinger Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA  Synonyms Activity schedules; Daily activities; Routine events; Schedules; Visual schedule  Definition Daily routine is a schedule, custom, or habit that is known to occur similarly on a daily frequency. Daily

is a schedule, custom, or habit that is known to occur similarly on a daily frequency. Daily routines are often preferred by children and adults diagnosed with autism in order to structure their day and provide predictability. Daily routines can be inherently known by the individual without support or review by an outside person, or are scheduled out by another and presented verbally or visually. Visual schedules are often used to act as an aid in convey- ing the day’s event and are often

Visual schedules are often used to act as an aid in convey- ing the day’s event and are often presented pictori- ally (as with picture icons) or in written form (as in a checklist). Consistent use of daily routines often helps reduce problematic behavior due to issues with transition from activity to activity. Daily rou- tines can be expanded to teach and/or guide most events that occur daily on a large scale (i.e., activities to occur from morning to night) or for specific events (e.g., hand

a large scale (i.e., activities to occur from morning to night) or for specific events (e.g., hand washing, putting away laundry).  See Also *   Adaptive Behavior *   Daily Living Skills *   Functional Assessment and Curriculum for Teaching Everyday Routines *   Functional Life Skills *   Prompt Hierarchy *   Prompting *   Visual Schedule *   Visual Supports  D-Amphetamine Karthikeyan Ardhanareeswaran Autism Program, Child Study Center, Yale School of Medicine, New Haven, CT, USA Program in

Autism Program, Child Study Center, Yale School of Medicine, New Haven, CT, USA Program in Neurodevelopment and Regeneration, Yale School of Medicine, New Haven, CT, USA Department of Molecular, Cellular, and Developmental Biology, Yale University, New Haven, CT, USA  Synonyms Adderall; Dexamfetamine  Definition D-amphetamine, or dextroamphetamine, is a psychostimulant primarily used for the treatment of ADHD and narcolepsy in children and adults. The drugs work by increasing the release of

of ADHD and narcolepsy in children and adults. The drugs work by increasing the release of nor- epinephrine, serotonin, and dopamine from their storage sites within presynaptic nerve terminals while simultaneously also competing for reuptake by their respective transporters, thus preventing the neurotransmitters from being reuptaken effec- tively. This neurotransmitter release is facilitated by the activation of a membrane transport system that brings in extracellular amphetamine in exchange

the activation of a membrane transport system that brings in extracellular amphetamine in exchange for pumping out the above neurotrans- mitters. D-amphetamine may also be a serotonin receptor direct agonist. While there is little to no substantial evidence for the effectiveness of D-amphetamine in treating ASD, use of the drug in ASD patients is high due to the high comorbid- ity of the disorder with ADHD. Side effects of this drug may include irregular heartbeat, headache, dizziness, weight

with ADHD. Side effects of this drug may include irregular heartbeat, headache, dizziness, weight loss, dry mouth, and others.  See Also *   ADHD *   Amphetamine  D-Cycloserine: Definition Karthikeyan Ardhanareeswaran Autism Program, Child Study Center, Yale School of Medicine, New Haven, CT, USA Program in Neurodevelopment and Regeneration, Yale School of Medicine, New Haven, CT, USA Department of Molecular, Cellular, and Developmental Biology, Yale University, New Haven, CT, USA  Synonyms

of Molecular, Cellular, and Developmental Biology, Yale University, New Haven, CT, USA  Synonyms Seromycin  Definition D-cycloserine is a partial glycineB site agonist that binds to the strychnine-insensitive glycine binding site on the NMDA receptor, agonizing the NMDA receptor, a glutamate receptor subtype. The NMDA receptor functions in synaptic plasticity. Alterations in synaptic plasticity are believed to be at the crux of ASD pathogenesis. D-cycloserine has been shown to partially reverse

believed to be at the crux of ASD pathogenesis. D-cycloserine has been shown to partially reverse social deficits in mouse models of autism. Similar benefits have been shown in human subjects as well, but further validation is still required. Because of its actions on the NMDA recep- tor, D-cycloserine is heavily studied in processes of fear conditioning and extinction as well as schizo- phrenia. In many of these studies, it is used in con- junction with behavioral therapy to allow greater

In many of these studies, it is used in con- junction with behavioral therapy to allow greater control over any ensuing alterations in synaptic plas- ticity. Currently, D-cycloserine is only approved for the treatment of tuberculosis. Side effects include headache, drowsiness, dizziness, or shaking.  Deaf-Blind Jennifer McCullagh and Deborah Weiss Department of Communication Disorders, Southern Connecticut State University, New Haven, CT, USA  Synonyms Sensory impairment  Short Description or

Connecticut State University, New Haven, CT, USA  Synonyms Sensory impairment  Short Description or Definition Deaf-blind individuals have varying degrees of a combination of both hearing and visual impair- ments. In the United States, the legal definition of blindness is 20/200 in the better eye. An individ- ual with a threshold exceeding 90 dB HL is con- sidered to be deaf. Individuals who are deaf-blind have communication as well as mobility deficits. This dual sensory impairment results in

deaf-blind have communication as well as mobility deficits. This dual sensory impairment results in the inabil- ity to use one sensory modality to compensate for the other. Services required for individuals who are deaf-blind are different than those required for individuals who are either deaf or blind. Commu- nication and language development are the pri- mary deficits in individuals with deaf-blindness; however, development of social-affective, cogni- tive, and motor skills is also affected.

however, development of social-affective, cogni- tive, and motor skills is also affected. Individuals with deaf-blindness also exhibit stereotyped behaviors, similar to those seen in children with autism spectrum disorders.  Categorization Deaf-blindness may be congenital or acquired resulting in a heterogeneous population. It is important to differentiate between these two groups; those with congenital deaf-blindness have additional handicaps and typically require a substantially greater

congenital deaf-blindness have additional handicaps and typically require a substantially greater amount of rehabilitation, including programs that are individually tailored (Rönnberg and Borg 2000).  Epidemiology It is estimated that approximately 10,000 children (ages birth to 22 years) in the United States are classified as deaf-blind (Rönnberg and Borg 2000; The National Consortium on Deaf-Blindness [NCDB] 2008). The adult deaf-blind population numbers are estimated at 35–40,000 individuals

[NCDB] 2008). The adult deaf-blind population numbers are estimated at 35–40,000 individuals (Watson and Taff-Watson 1993). Congenital deaf-blindness may be caused by hereditary or chromosomal syndromes and disor- ders, prenatal or congenital complications, com- plications of prematurity, and undiagnosed causes. Some common hereditary or chromo- somal causes are CHARGE syndrome, Usher syn- drome, and Down syndrome. Cytomegalovirus (CMV) and microcephaly are some prenatal or congenital

drome, and Down syndrome. Cytomegalovirus (CMV) and microcephaly are some prenatal or congenital complications that may lead to deaf- blindness. In the past, maternal rubella was the leading cause of deaf-blindness. The majority of cases of deaf-blindness are acquired; a variety of causes are responsible such as meningitis, inflicted brain damage, and aging of the sensory organs (Rönnberg and Borg 2000). There have been very few reports on the com- bined disorders of autism and deaf-blindness.

2000). There have been very few reports on the com- bined disorders of autism and deaf-blindness. The prevalence of deaf-blind individuals with autism is unknown, although it is estimated to be small. Further, because etiological factors and symptoms such as impaired social interaction and communi- cation impairment are associated with both disor- ders, it is challenging to differentially diagnose between the two.  Natural History, Prognostic Factors, and Outcomes The history of service for the

between the two.  Natural History, Prognostic Factors, and Outcomes The history of service for the population of indi- viduals with deaf-blindness is sharply divided between the pre- and post-rubella epidemic of 1964–1965. The first citations of education with this population appeared in the mid-1800s with Laura Bridgman described as the first deaf-blind individual to learn language at the Perkins School for the Blind. Helen Keller was an even more recognized and influential figure in the success

School for the Blind. Helen Keller was an even more recognized and influential figure in the success of educating deaf-blind individuals. However, even through the 1960s, limited education was available for this population, and individuals were often placed in residential schools or asy- lums. Congressional legislation, approved in the 1970s and beyond, which mandated education for children with disabilities, had a significant effect in advancing the education of this population (NCDB 2012).

disabilities, had a significant effect in advancing the education of this population (NCDB 2012).  Clinical Expression and Pathophysiology This severe sensory deficit results in communica- tion disorders and subsequent handicaps in edu- cation, social and cultural development, and the acquisition of information. The tactile sense is commonly utilized by these individuals for com- munication as well as for feelings of security and control. Other methods of compensation include use of the cutaneous

as for feelings of security and control. Other methods of compensation include use of the cutaneous senses and vibration for sound localization. Few studies have explored the psychosocial aspects of being deaf-blind and those that do typically focus on adaptation. Depression in adolescents and psychosis has been reported (Rönnberg et al. 2002).  Evaluation and Differential Diagnosis The evaluation process for deaf-blindness is focused on determining the extent to which the auditory and visual

process for deaf-blindness is focused on determining the extent to which the auditory and visual systems are impaired. Since the characteristics of deaf-blindness are similar to those of autism spectrum disorders, determining if comorbid autism spectrum disorders exist can be challenging. These individuals are also typically difficult to test; therefore, identification is further complicated and standardized tests are nonexistent (Vernon 2010). There tends to be an overdiagnosis of autism in

standardized tests are nonexistent (Vernon 2010). There tends to be an overdiagnosis of autism in individuals with deaf- blindness leading to unsuitable intervention (Hoevenaars-van den Boom et al. 2009). These authors studied 10 individuals with deaf- blindness and intellectual disability in order to determine if they could differentiate which of these individuals also had autism (which had been previously diagnosed). They utilized an instrument that they had developed specifically for this

previously diagnosed). They utilized an instrument that they had developed specifically for this purpose. Results indicated the presence of a significantly greater number of impaired behaviors among the individuals with autism in reciprocity of social interaction, quality of initia- tives to contact, and use of adequate communica- tive signals and functions. The authors concluded that their instrument has promise in terms of its utilization in identifying individuals with autism within the

has promise in terms of its utilization in identifying individuals with autism within the deaf-blind population. Operant condi- tioning techniques have also been used success- fully in the assessment of this population (Rönnberg and Borg 2000).  Treatment Treatment for deaf-blindness is typically focused on improving the communication, self-help skills, and mobility of the individual. Since great vari- ability exists from individual to individual, it is imperative to establish the degree to

vari- ability exists from individual to individual, it is imperative to establish the degree to which either the auditory system, visual system, or both can be utilized to enhance communication. The predom- inant therapeutic model is behavior modification (Rönnberg and Borg 2000). It is recommended that the curriculum addresses five main areas: (1) communication skills, (2) cognitive develop- ment, (3) social and emotional development, (4) motor and self-care skills, and (5) sensory development

(3) social and emotional development, (4) motor and self-care skills, and (5) sensory development (Murdoch 1986). Research conducted on communicative and linguistic treatment primarily focuses on the “Tadoma” method in which the Tadoma user places his/her hand on the speaker’s face in a proscribed position. Through the use of percep- tual cues, skilled Tadoma users are able to achieve a relatively high level of comprehension of spoken speech. Intelligibility of their speech production is

high level of comprehension of spoken speech. Intelligibility of their speech production is 60–70%; however, the rate of speech is slower by about 50%. Other methods of communication include the T-code, sign lan- guage, and textured symbols (Rönnberg and Borg 2000).  See Also *   Blindness *   CHARGE Syndrome *   Deafness *   Sensory Processing *   Sensory Stimuli  Deafness Jennifer McCullagh Department of Communication Disorders, Southern Connecticut State University, New Haven, CT, USA

Department of Communication Disorders, Southern Connecticut State University, New Haven, CT, USA  Synonyms Profound hearing impairment  Short Description or Definition “Deafness” is a term that has varying definitions but is characterized by severe-to-profound deficits in the ability to hear. Deaf with a capital “d” is a term used to describe individuals with severe-to- profound hearing loss resulting in little to no usable hearing, even with the use of amplification devices (i.e., hearing aids,

in little to no usable hearing, even with the use of amplification devices (i.e., hearing aids, assistive listening devices, etc.). Furthermore, individuals who are Deaf belong to the Deaf culture which uses American Sign Lan- guage (ASL) as their primary mode of communica- tion. Deaf with a lowercase “d” refers to individuals with severe-to-profound hearing loss who use amplification devices and use oral communication as their primary mode of communication.  Categorization Degrees of Hearing

use oral communication as their primary mode of communication.  Categorization Degrees of Hearing Impairment in dB HL | | | |:----------------|:---| | Normal | 10 to +15 | | Minimal | 16–25 | | Mild | 26–40 | | Moderate | 41–55 | | Moderately severe | 56–70 | | Severe | 71–90 | | Profound | 91+ |  Epidemiology According to the National Institute of Deafness and Other Communication Disorders (NIDCD 2010), approximately 2–3 in every 1,000 children born in the United States are born with deafness

2010), approximately 2–3 in every 1,000 children born in the United States are born with deafness or some degree of hearing impairment. Hearing loss occurs in approximately 18% of 45- to 64-year- olds, 30% of 65- to 74-year-olds, and 47% of 75-year-olds and older. More systematic research needs to be done regarding the incidence and prevalence of deafness in the population with autism.  Natural History, Prognostic Factors, and Outcomes Individuals with severe-to-profound hearing loss are not

History, Prognostic Factors, and Outcomes Individuals with severe-to-profound hearing loss are not able to hear speech sounds and most envi- ronmental sounds without amplification. If indi- viduals with this degree of hearing loss are not treated in the first year of life, severe speech and language delays may occur. Furthermore, learning and attention disorders may often arise. Individ- uals with severe-to-profound hearing impairment likely need hearing aids or cochlear implants, speech and

severe-to-profound hearing impairment likely need hearing aids or cochlear implants, speech and auditory training/therapy, and special education services. Prior to the onset of the Early Detection and Intervention (EDHI) program in the late 1980s/ early 1990s, children with hearing impairment were not typically diagnosed until age 2 or 3 years when speech and language delays were apparent. Since the beginning of the EDHI program, children with hearing impair- ment are being identified and

Since the beginning of the EDHI program, children with hearing impair- ment are being identified and treated earlier which is important for speech and language development (either spoken language or Amer- ican Sign Language (ASL)). Early detection and intervention are critical because a sensitive period exists for speech and language development. The first few years of life is when the foundation for speech and language is established, and if this period is missed due to an unidentified

for speech and language is established, and if this period is missed due to an unidentified severe-to-profound hearing loss, the child will not acquire speech and/or language. The development of oral speech and language is possible with appropriate amplifi- cation or cochlear implantation in conjunction with speech and language therapy. In postlingually deafened adults, appropriate amplification is critical to their ability to commu- nicate with spoken language. In order to perceive what is being

critical to their ability to commu- nicate with spoken language. In order to perceive what is being said, as well as monitor what their own speech, these individuals need to be fit with hearing aids, and/or assistive listening devices, or with cochlear implants.  Clinical Expression and Pathophysiology Deafness occurs as a result of a sensorineural or mixed (conductive and sensorineural) hearing loss. Conductive hearing losses are those that occur due to pathology in the outer or middle ear.

loss. Conductive hearing losses are those that occur due to pathology in the outer or middle ear. Conductive hearing losses alone only result in at most; moderate hearing losses, however, in conjunction with sensorineural hearing losses can result in severe-to-profound hearing loss. Sensorineural hearing losses occur as a result of pathology (typically hair cell loss) in the cochlea or auditory nerve fibers. Deafness can be either congenital or acquired. Congenital deafness can be the result of

fibers. Deafness can be either congenital or acquired. Congenital deafness can be the result of genetic factors, maternal illness, and/or infec- tion. Some examples of syndromes associated with hearing impairment are CHARGE syn- drome, Usher syndrome, and Waardenburg’s syndrome. Examples of maternal illness and/or infection include rubella, cytomegalovirus (CMV), diabetes, hypoxia, syphilis, and toxe- mia. Acquired deafness may be the result of ototoxic medications, infection, meningitis, and

toxe- mia. Acquired deafness may be the result of ototoxic medications, infection, meningitis, and encephalitis, or the cause may be unknown. Depending on the cause of the hearing loss, the impairment may, or may not, be progressive in nature. Once hearing impairment is established, annual hearing evaluations are generally recommended.  Evaluation and Differential Diagnosis The goal of hearing evaluations is to assess the outer, middle, and inner ears. The audiologist will first perform otoscopy

is to assess the outer, middle, and inner ears. The audiologist will first perform otoscopy to determine if the outer ear (pinna and external auditory meatus) and tym- panic membrane have normal appearances. Then tympanometry is completed to determine the sta- tus of the middle ear. Finally, behavioral and/or electrophysiologic testing is completed to deter- mine hearing sensitivity at the frequencies impor- tant for speech. In behavioral testing, the goal is to complete a pure-tone audiogram

impor- tant for speech. In behavioral testing, the goal is to complete a pure-tone audiogram which is a graph- ical depiction of the hearing thresholds of the octave frequencies from 250 to 8,000 Hz. Speech reception threshold and word recognition testing are also done to determine threshold to speech stimuli as well as how accurately words are perceived. The type of hearing evaluation one undergoes depends on a number of factors, including age and ability to respond to the tonal and speech

depends on a number of factors, including age and ability to respond to the tonal and speech stimuli. Evaluation methods can be either behavioral or electrophysiologic. Behavioral tests require the listener to respond in some way to the tonal or speech stimuli (i.e., raise hand, turn head, repeat back words, etc.). Some examples of behavioral test procedures are behavioral observation audi- ometry (BOA), visual reinforcement audiometry (VRA), conditioned play audiometry, and stan- dard

ometry (BOA), visual reinforcement audiometry (VRA), conditioned play audiometry, and stan- dard audiometry. Behavioral observation audiom- etry occurs when the audiologist plays tonal and speech stimuli through the sound field or head- phones and then watches for a response from the individual. This response might be the cessation of crying or cooing, eyes widening, or turning the head. Visual reinforcement audiometry occurs when lighted puppets positioned in boxes directly above the left and

audiometry occurs when lighted puppets positioned in boxes directly above the left and right speakers in the booth are illuminated when the stimulus is presented. This is done repeatedly until the individual is trained to look in the direction of the stimulus. During the actual testing, the stimuli are presented and the light is turned on only after the individual turns and looks toward the light. In conditioned play audiometry, hearing thresholds are obtained by using toys such as blocks. For

In conditioned play audiometry, hearing thresholds are obtained by using toys such as blocks. For example, the indi- vidual is trained to drop a block in a bucket every time they perceive the beeping sound. Finally, hearing thresholds using standard audiologic pro- cedures are obtained by having the individual raise their hand or push a button every time they perceive the tonal stimuli. Physiologic tests, like the otoacoustic emis- sions (OAEs) and auditory brainstem response (ABR), do not

tests, like the otoacoustic emis- sions (OAEs) and auditory brainstem response (ABR), do not require a behavioral response from the listener and are thus commonly used in newborn hearing screenings, infant hearing tests, as well as hearing tests on individuals who are unwilling, or unable, to respond to behavioral tests. Otoacoustic emissions are generated by the hair cells in the cochlea, so if the hair cells are absent or not functioning properly, the otoacoustic emissions will be absent or

the hair cells are absent or not functioning properly, the otoacoustic emissions will be absent or reduced.  Treatment In Deaf populations, no “treatment” is sought since deafness is not considered a problem. Indi- viduals who are Deaf are taught American Sign Language (ASL) and become immersed in Deaf culture. These individuals use manual communi- cation to interact in society. Individuals who are deaf will often use hearing aids and/or assistive listening devices. With the advancement in

are deaf will often use hearing aids and/or assistive listening devices. With the advancement in technology, individuals who do have a severe-to-profound hearing loss and who do not receive benefit from amplification may get cochlear implants. Children as young as 12 months can receive cochlear implant surgery. Either method (hearing aids or cochlear implanta- tion) must be combined with speech and language therapy in order to train the system to listen as well as produce intelligible speech.

and language therapy in order to train the system to listen as well as produce intelligible speech. Prognosis, evaluation methods, and treatment of individuals with autism and deafness are con- tingent upon a number of factors. Some of these factors include the severity of autism, etiology of the hearing loss, comorbid disorders, mode of communication, and candidacy for hearing aids and/or cochlear implants. Ultimately, a collabora- tive approach should be taken when treating indi- viduals with

implants. Ultimately, a collabora- tive approach should be taken when treating indi- viduals with autism and deafness.  See Also *   American Sign Language (ASL) *   Auditory Brainstem Response (ABR) *   Auditory System *   Cochlea *   Hearing  Deborah Fein Diana L. Robins AJ Autism Drexel Institute, Drexel University, Philadelphia, PA, USA  Name and Degrees Deborah Fein, Ph.D. University of Connecticut Department of Psychology, U-20 Storrs, CT, USA  Major Appointments (Institution, Location,

Department of Psychology, U-20 Storrs, CT, USA  Major Appointments (Institution, Location, Dates) University of Connecticut, Storrs, CT, 1988 – current Boston University School of Medicine, Boston, MA, 1979–2000  Major Honors and Awards University of Connecticut Board of Trustees Dis- tinguished Professor, 2003– Distinguished Contribution to the Science of Psy- chology award, Connecticut Psychological Association, 2012 Edith Kaplan Award for Outstanding Contribu- tions to Neuropsychology, 2012

Association, 2012 Edith Kaplan Award for Outstanding Contribu- tions to Neuropsychology, 2012  Landmark Clinical, Scientific, and Professional Contributions Deborah Fein has published more than 150 articles and chapters on autism spectrum disorder (ASD) since the late 1970s. Her major contributions span a number of areas, including characterizing chil- dren who show optimal outcomes after diagnosis and treatment for autism, screening to promote early detection of autism, developing theoretical

and treatment for autism, screening to promote early detection of autism, developing theoretical models of autism, and writing seminal papers on topics such as the role of oxytocin in autism. Dr. Fein’s elucidation of the primacy of social deficits in autism, described in a 1986 paper in the Journal of the American Academy of Child Psychiatry, as well as her theories on the neuro- psychological underpinnings of autism, seen in her 1996 paper in Psychological Review, and her edited volume, The

underpinnings of autism, seen in her 1996 paper in Psychological Review, and her edited volume, The Neuropsychology of Autism, as well as her recent honor as the Birch Memorial Lecture speaker at the 2015 annual meeting of the International Neuropsychological Society, have disseminated her work to a broad audience. Her contributions to early screening, as a co-author of the Modified Checklist for Autism in Toddlers (M-CHAT), and the M-CHAT, Revised, with Follow-Up (M-CHAT-R/F) signifi- cantly

Autism in Toddlers (M-CHAT), and the M-CHAT, Revised, with Follow-Up (M-CHAT-R/F) signifi- cantly impacted the early detection of autism. Her subsequent work examining the minority of chil- dren with a clearly documented history of autism, but no current symptoms, was ground breaking in its characterization of children who achieve this “optimal outcome” and no longer demonstrating deficits associated with their history of autism. Additionally, her work reaches beyond the professional and academic

with their history of autism. Additionally, her work reaches beyond the professional and academic audiences that access scientific journals, in her publication of a book for educators on adapting classroom strategies for children with autism, and her newest book offer- ing parents activities to do at home with very young children at risk or diagnosed with autism. She is currently developing a website that will be available for free to parents, to teach them princi- ples of behavioral teaching

that will be available for free to parents, to teach them princi- ples of behavioral teaching and stimulating attachment.  Short Biography Dr. Deborah Fein, born on March 21, 1947, is a neuropsychologist who has focused much of her career studying autism. Her theoretical and empir- ical work in autism was heavily influenced by her training at the Boston Veteran’s Affairs Hospital, under the mentorship of Dr. Edith Kaplan (with whom she published several versions of the Wechsler tests as a

mentorship of Dr. Edith Kaplan (with whom she published several versions of the Wechsler tests as a process instrument), and by a postdoctoral fellowship at BU School of Medicine with Dr. Al Mirsky. In addition to her scientific contributions, Dr. Fein has trained and mentored more than 50 trainees in autism and neuropsychol- ogy, many of whom now hold faculty positions in academic or medical institutions, facilitating her tremendous influence on the field. Dr. Fein lives in Western Massachusetts

facilitating her tremendous influence on the field. Dr. Fein lives in Western Massachusetts with her husband, and they have two daughters.  See Also *   Modified Checklist for Autism in Toddlers (M-CHAT) *   Optimal Outcome *   Recovery in Autism  Declarative Memory Naomi Schneider College of Education and Human Ecology, The Ohio State University, Columbus, OH, USA  Synonyms Explicit memory  Definition Declarative memory is a type of long-term memory and is memory for facts, data, words, etc.

Declarative memory is a type of long-term memory and is memory for facts, data, words, etc. Declarative memory can be divided into three categories: episodic, semantic, and lexical. Episodic memory includes memory for personal events or experiences. Episodic memory is primarily learned consciously and is linked to a certain time and place. Examples include specific events such as walking to the store or cooking dinner. Semantic memory refers to general knowledge or facts, inde- pendent of

the store or cooking dinner. Semantic memory refers to general knowledge or facts, inde- pendent of experience. Examples include facts about historical events or types of cars. Lexical memory is the knowledge for words. It has been observed that some individuals with autism have enhanced semantic and lexical memory abilities.  See Also *   Episodic Memory *   Explicit Memory *   Memory *   Semantic Memory  Decoding Skills Diana B. Newman Communication Disorders Department, Southern Connecticut

Memory  Decoding Skills Diana B. Newman Communication Disorders Department, Southern Connecticut State University, New Haven, CT, USA  Synonyms Word recognition  Definition Decoding refers to the word recognition processes in which written words or print are transformed into spoken words. This process is commonly referred to as “sounding out words.” Proficient decoding requires rapid letter recognition, knowl- edge of sound-letter correspondences, phonemic awareness, and word attack skills

knowl- edge of sound-letter correspondences, phonemic awareness, and word attack skills (i.e., analysis/ segmenting and synthesis/blending of the letter- sound correspondences). Accurate and fluent decoding allows for comprehension of words both in isolation and in context. Many individuals with autism spectrum dis- orders (ASD) are able to mentally represent at least some single word meanings; that is, read words in isolation and understand their mean- ings. Some individuals with ASD

that is, read words in isolation and understand their mean- ings. Some individuals with ASD spontaneously read words with excellent proficiency at an unex- pectedly early age (referred to as hyperlexia); however, it is the ability to read beyond decoding individual words (i.e., reading in context) that presents greater difficulty for individuals with ASD.  Deep Pressure Proprioception Touch Technique Winifred Schultz-Krohn Department of Occupational Therapy, San José State University, San José,

Winifred Schultz-Krohn Department of Occupational Therapy, San José State University, San José, CA, USA  Synonyms Wilbarger Protocol  Deep pressure proprioceptive touch technique (DPPT): Previously known as the Wilbarger Pro- tocol, DPPT was developed by two occupational therapists, Patricia and Julia Wilbarger, to address sensory defensiveness. This technique requires specific training and includes three parts where first a client’s arms, back, and legs are brushed firmly with a soft-bristled

three parts where first a client’s arms, back, and legs are brushed firmly with a soft-bristled brush sim- ilar to a surgical brush. Then joint compressions are applied at specified joints throughout the body, and finally a sensory diet is prescribed to address sensory defensiveness. This technique has been effectively used to reduce sensory defensiveness and has been linked to bringing salivary cortisol levels closer to normal values in children with sensory processing deficits. The cortisol levels

levels closer to normal values in children with sensory processing deficits. The cortisol levels have been used as a measure of stress in children, and with the use of the DPPT, the levels of cortisol approached a normal level. The recommended frequency for this technique is every 2 h during waking hours for 2 weeks to see diminished sensory defensive behaviors. A pilot investigation using the DPPT was suc- cessful in reducing self-injurious behaviors in women with depression and a history of

was suc- cessful in reducing self-injurious behaviors in women with depression and a history of self- injurious behaviors. A follow-up 9 months after providing DPPT found women reported a decrease in self-harming behaviors.  Deficits in Attention, Motor Control, and Perception Fred R. Volkmar Child Study Center, Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology, Yale Child Study Center, School of Medicine, Yale University, New Haven, CT, USA  Synonyms DAMP; DAMP syndrome

Study Center, School of Medicine, Yale University, New Haven, CT, USA  Synonyms DAMP; DAMP syndrome  Definition DAMP syndrome is a diagnostic concept devel- oped by Gillberg and colleagues in Sweden and used more frequently in Scandinavia. The term refers to a disorder in which aspects of attention- deficit disorder and motor coordination difficul- ties are present. A close link to PDD-NOS/autism spectrum disorder has been suggested (Gillberg et al. 1993; Kadesjoe and Gillberg 1999). One

spectrum disorder has been suggested (Gillberg et al. 1993; Kadesjoe and Gillberg 1999). One complexity in this regard is the potential for atten- tional difficulties to lead to problems with peers and social interaction; this is particularly the case if some degree of language difficulty is involved (Towbin 2005). Issues of diagnosis can also be complex in children with significant intellectual disability, attentional, and motor problems, although it has been suggested that the DAMP concept be

attentional, and motor problems, although it has been suggested that the DAMP concept be restricted to cases where the individual has an IQ no lower than the mild-moderate range of disability. Although the topic has not been the focus of widespread research, the issue of associ- ations between autism spectrum disorder and and attentional problems is one of the great interests for both research and clinical purposes (Davis and Kollins 2012).  See Also *   Attention Deficit/Hyperactivity Disorder

clinical purposes (Davis and Kollins 2012).  See Also *   Attention Deficit/Hyperactivity Disorder *   Developmental Coordination Disorder *   Pervasive Developmental Disorder Not Other- wise Specified  Definition: Metaphor Laura Foran Lewis College of Nursing and Health Sciences, University of Vermont, Burlington, VT, USA  Synonyms Figurative language  Definition A type of figurative language in which objects or actions are compared in a way that is implied but not literal, such as “She has a

which objects or actions are compared in a way that is implied but not literal, such as “She has a heart of gold,” or where one thing is considered as representa- tive of the other as in symbolism (Glucksberg 2001). Typically developing children usually begin to understand and produce simple meta- phors as early as 2 years of age and progress to more advanced comparisons with age, showing significant improvements around age 4–5 years and continuing to develop these skills into adulthood (Stites

improvements around age 4–5 years and continuing to develop these skills into adulthood (Stites and Ozcaliskan 2012). Chil- dren on the autism spectrum with autism dem- onstrate poorer comprehension of figurative language than their typically developing peers (Kalandadze et al. 2019). Two theories are proposed to explain diffi- culties in interpreting figurative language in individuals with autism. The first theory sug- gests that this is due to a cognitive deficit in “theory of mind,” or the

The first theory sug- gests that this is due to a cognitive deficit in “theory of mind,” or the ability to attribute men- tal states to self and to others, which leads to impairments in imagination, socialization, and communication (Happe 1995). Since metaphor requires the listener to be able to understand the speaker’s intention, an individual with autism might interpret the language literally and be unable to infer the intended meaning of the metaphor. The second theory proposes that poor

and be unable to infer the intended meaning of the metaphor. The second theory proposes that poor figurative language comprehension is related to deficits in structural language skills, including vocabulary and syntax (Whyte et al. 2014). Figurative language is ubiquitous in social communication, and, therefore, challenges interpreting figurative language can affect social relationships, social participation, and educational achievement (Kalandadze et al. 2016).  See Also *   Cognitive Flexibility

and educational achievement (Kalandadze et al. 2016).  See Also *   Cognitive Flexibility *   Figurative Language *   Metaphoric Language  DeGangi-Berk Test of Sensory Integration Tara J. Glennon Occupational Therapy, Quinnipiac University, Hamden, CT, USA Centre of Pediatric Therapy, Fairfield and Wallingford, Wallingford, CT, USA  Synonyms DeGangi-Berk; TSI  Description This assessment tool offers an objective method to examine the sensory functioning of children aged 3–5 years. This 36-item

an objective method to examine the sensory functioning of children aged 3–5 years. This 36-item assessment published in 1983 intended to provide an objective method to determine whether, and to what extent, a pre- school child had sensory processing deficits so that the practitioner did not need to rely on clinical judgment alone. At that time, there were only measurements of motor functioning with no other instrument sufficiently sensitive to deter- mine if these motor issues were cause by an

no other instrument sufficiently sensitive to deter- mine if these motor issues were cause by an underlying sensory integrative difficulty. Once the items are scored, they are calculated to establish an overall score of sensory integrative functioning (total test score), as well as a score within each of the following subdomains of sen- sory integration: 1.  Postural control 2.  Bilateral motor integration 3.  Reflex integration The above subdomains were identified for inclusion “because of their

3.  Reflex integration The above subdomains were identified for inclusion “because of their clinical significance in the development of sensory integrative func- tions in the preschool child” (DeGangi and Berk 1983, p. 1). Table 1 outlines the components of each subdomain. This tool was designed to be implemented by occupational or physical therapy practitioners given their training and educational background in the interpretation of sensory integrative infor- mation and test results. Therefore,

background in the interpretation of sensory integrative infor- mation and test results. Therefore, it is suggested that a practitioner outside of these fields (i.e., special educators or motor development special- ists) seek the assistance of an occupational or physical therapist for the interpretation of the test scores. With a baseline understanding of sensory pro- cessing, implementers should allow 2 h to learn the items prior to implementation. The assessment manual is easy to follow, and

allow 2 h to learn the items prior to implementation. The assessment manual is easy to follow, and the specific instruc- tions for item implementation are outlined with pictures to assist. A score of 0 through 1, 2, 3, or 4 is received depending on the child’s response to each item and the quality of the performance indicating that the skill has been developed. The higher the score indicates a more integrated, orga- nized, or normal response. Lower scores qualify the child’s responses, for

a more integrated, orga- nized, or normal response. Lower scores qualify the child’s responses, for example, unable to hold, loses grasp, does not cross [midline], no resis- tance, slight to moderate flexion of the elbow, etc. The score tallies in each subdomain then result in a “normal,” “at risk,” or “deficient” score pro- file for a total test score, postural control score, bilateral motor integration score, and a reflex inte- gration score (which is only counted toward the total test score).

score, and a reflex inte- gration score (which is only counted toward the total test score). Score ranges for the varying age ranges are provided on the score sheet which makes scoring very clear. This criterion- referenced assessment tool offers clinicians work- ing with this population of children a structured and organized method to assess sensory integra- tive functions in children with delays in sensory, motor, and perceptual skills, or children suspected of having learning problems.

in sensory, motor, and perceptual skills, or children suspected of having learning problems.  Historical Background Georgia DeGangi, PhD, OTR (occupational ther- apist who now practices in clinical psychology) and Ronald Berk, PhD (professor of educational research at Johns Hopkins University at the time and authored the 1980 book titled: Criterion Referenced Measurements: State of the Art) devel- oped this objective tool to observe and measure the sensory integrative processes in preschool

oped this objective tool to observe and measure the sensory integrative processes in preschool children, specifically the vestibularly based func- tions of postural control, bilateral integration, and reflex integration. It was thought that difficulties in sensory integrative processing in preschool children could result in fine or gross motor delays, poor balance, poor hand use, distractibility, and/or visual-spatial organization later in the school years. Rather than wait for these secondary

and/or visual-spatial organization later in the school years. Rather than wait for these secondary issues to arise, it was thought that intervention could addressed/remediated the sensory concerns before secondary issues arose. This thought, based on sensory integration theory (Ayres 1964, 1972, 1979), continues today.  Psychometric Data DeGangi began developing test items in 1978, completed psychometric studies, revised the test and the items, completed several rounds of reli- ability and

psychometric studies, revised the test and the items, completed several rounds of reli- ability and validity testing, and ultimately identi- fied 73 items. After additional item analysis, which discarded items that did not well discrimi- nate typical from delayed children or were not sufficiently sensitive to typical developmental in these age ranges, only 36 items remained. The test manual specifically outlines each step of the sampling and statistical procedures. How- ever, it should be noted

outlines each step of the sampling and statistical procedures. How- ever, it should be noted that there were some sampling difficulties resulting in a disproportion- ate number of 3–4-year-old children and a low sample population (n). The authors therefore sug- gest that further research with a more representa- tive sample would improve the utility of the tool and the generalizability of the findings. Table 2 outlines the components of the assess- ment process including the psychometric proce-

Table 2 outlines the components of the assess- ment process including the psychometric proce- dures associated with the development of this criterion-referenced assessment tool. In summary, the total test score can be used reliably and validly for screening decisions, and the postural control score and bilateral motor integration score can be used reliably and validly for diagnostic decisions based on the following information: 1.  Domain validity: The total test had a high degree of domain

based on the following information: 1.  Domain validity: The total test had a high degree of domain validity *   Consensus among therapists that the items measure the behaviors they were designed to measure, and that the collection of items composing each subtest was representative of the behaviors defined by the subdomains. (DeGangi and Berk 1983, p. 40) 2.  Construct validity: *   Total test score can be used for screening decisions with better that 80% accuracy and a 9% false normal error

score can be used for screening decisions with better that 80% accuracy and a 9% false normal error rate. *   Postural control and bilateral motor integra- tion subtests were extremely accurate. *   Reflex integration was the least effective subtest. 3.  Interobserver reliability: *   Very reliable for postural control, bilateral integration, and total sensory integration behaviors. *   Considerable subjectivity for reflex integra- tion behaviors. 4.  There were high levels of classification

subjectivity for reflex integra- tion behaviors. 4.  There were high levels of classification consis- tency in the identification of the classification designated for each item. 5.  Test-retest reliability: *   The results provided substantial evidence of the stability of sensory integrative functions for a 1-week re-test interval using a homo- geneous preschool sample. (DeGangi and Berk 1983, p. 41).  Testing procedures Obtaining information: Thirty-six items should be administered individually

Testing procedures Obtaining information: Thirty-six items should be administered individually and in one sitting; items should be administered exactly as described in the order presented in the manual.

Time to administer: 30 min Time to score: 10 min Materials included in the test kit? X yes no Additional materials needed: 10   15 ft. space, table and chair, masking tape, pencil without eraser, switch-back stopwatch, 3-ft-long wooden dowel, rolling pin, carpeted scooter board, plastic hula hoop, and floor mat

Is the tool easy to learn and administer? X yes no How much training or practice is required? 2 h Who can administer the test? Designed for implementation by occupational therapists and physical therapists; can be implemented by special educators or motor development specialists but seeking an occupational or physical therapist to interpret whether the score is recommended as they have training and education in sensory processing.

Is the manual easy to follow/understand? X yes no Are the forms easy to follow/understand? X yes no The forms are very clear, easy to follow while administering, and can be quickly scored in a very objective manner.

Domains: Postural control, bilateral integration, and reflex integration  Clinical Uses Any assessment tool should be used in combina- tion with other tools in order to gain the most comprehensive picture of a child’s functioning. The DeGangi-Berk TSI was intended to provide information related to the three subdomains noted above as these categories of sensory integrative functioning were thought to have a strong impact on the development of sensory integrative func- tions in the preschool

to have a strong impact on the development of sensory integrative func- tions in the preschool child. The intent was to administer this assessment to children with delays in sensory, motor, and perceptual skills, or to children suspected of having learning problems. This tool continues to be utilized today in clinical practice as it is a structured and organized method to investigate the sensory processing abil- ities in this age group.  See Also *   Ayres, A. Jean *   Evaluation of Sensory

processing abil- ities in this age group.  See Also *   Ayres, A. Jean *   Evaluation of Sensory Processing *   Occupational Therapy (OT) *   Sensory Diet *   Sensory Integration (SI) Therapy *   Sensory Integration and Praxis Test *   Sensory Processing *   Sensory Processing Assessment *   Sensory Processing Measure *   Sensory Processing Measure: Preschool (SPM-P) *   Test of Sensory Functioning in Infants  Deictic Terms Sarita Austin Unlocking Language, London, UK  Synonyms Deixis

in Infants  Deictic Terms Sarita Austin Unlocking Language, London, UK  Synonyms Deixis  Definition Deictic terms are words whose meaning shifts depending on the point of view of the speaker. Examples of deictic terms include “this/that,” “here/there,” “I/you,” and “my/your.” While some personal pronoun contrasts (“I/you,” “my/ your”) are expected to develop before 3 years of age, many typically developing children continue to have difficulty with spatial contrast deictic terms (“this/that,”

developing children continue to have difficulty with spatial contrast deictic terms (“this/that,” “here/there”) into the early school age years. This difficulty is thought to be related to the shifting quality of the referents for these terms. That is, “I” does not refer to any particular person but to the person who happens to be talking at a given time. When that person stops talking, the referent for “I” shifts to the next speaker. “Here” refers not to a specific location but rather to a place

for “I” shifts to the next speaker. “Here” refers not to a specific location but rather to a place near the speaker. What is “here” for the speaker may be “there” for the listener. This shifting reference is thought to cause special difficulty for speakers with ASD, possibly due to their difficulties with perspective taking, communicative engagement, flexibility, and change. It is important to note that young children with typical development can also have difficulty with deictic terms.  See Also *

young children with typical development can also have difficulty with deictic terms.  See Also *   Pronoun Errors *   Pronoun Reversal *   Pronoun Use  Delaware Autism Program Vincent Winterling Delaware Autism Program, Newark, DE, USA Retired (former Statewide Director of Autism).  Major Areas or Mission Statement The Delaware Autism Program (DAP) is one of the largest public school programs in the United States specializing in educating children and ado- lescents with an Autism Spectrum

in the United States specializing in educating children and ado- lescents with an Autism Spectrum Disorder (ASD). In 2019, it served in excess of 1500 stu- dents between 2 and 21 years of age, in the full range of settings (residential programs, separate schools and settings, and integrated school and community sites) in six affiliated school districts. DAP sites employ more than 500 staff, including teachers, assistants, specialists (psychologists, behavior analysts, speech language

including teachers, assistants, specialists (psychologists, behavior analysts, speech language pathologists, occupational therapists, nurses, etc.), and admin- istrative and support staff.  Landmark Contributions Elements of DAP have been described in various book chapters (Battaglini and Bondy 2006; Bondy 1996; Bondy and Frost 1994, 1995; Doehring and Winterling 2011). The Picture Exchange Communication System (PECS) (Frost and Bondy 2000) was first developed by Andy Bondy and Lori Frost during

System (PECS) (Frost and Bondy 2000) was first developed by Andy Bondy and Lori Frost during their tenure at DAP, together with the involvement of other DAP staff. Statewide directors have included Dr. Andy Bondy (1981–1997), Dr. Peter Doehring (1999–2008), Dr. Vincent Winterling (2009– 2019), Dr. Mary Whitfield (2019–present).  Major Activities DAP is public school program that presently con- sists of affiliated programs in 6 of the 19 school districts (Local Education Agencies, or LEA) across

of affiliated programs in 6 of the 19 school districts (Local Education Agencies, or LEA) across the 3 counties in the State of Delaware, plus other specialized services and supports (e.g., full year programming, respite, and tempo- rary residential), provided through the Office of the Statewide Director of Autism. As a public school program, DAP’s services are fully funded by the LEA and the State Education Agency (SEA), at no cost to parents. The six affiliated programs share many key elements,

Education Agency (SEA), at no cost to parents. The six affiliated programs share many key elements, including: (a) programs for children 2 up until 21 years of age, across the autism spectrum; (b) settings rang- ing from full inclusion to separate classroom for children with ASD, including extended school year services; (c) reliance on teaching methods based on principles of Applied Behavior Analysis (ABA), including PECS; (d) a high staff to student ratio to support more individualized teaching

(ABA), including PECS; (d) a high staff to student ratio to support more individualized teaching and community integration; (e) opportunities for par- ents to create local Parent Advisory Committees (PAC) to provide input to the LEA, SEA, and Office of the Statewide Director of Autism; (f) expectations that staff complete a core training program, which for teachers includes a 15-credit graduate teaching certificate in autism and (g) oversight of the program provided by external experts in

teaching certificate in autism and (g) oversight of the program provided by external experts in collaboration with program administra- tion. Many of the programs also coordinate with other organizations (i.e., daycares, vocational set- tings, institutes of higher education) to provide community-based services. Three of the six pro- grams operate larger county centers which pro- vide education services to students with more challenging educational and behavioral needs. Through an agreement with

to students with more challenging educational and behavioral needs. Through an agreement with the SEA, the Office of the Statewide Director of Autism provides ser- vices across the state, including: (a) management of extended educational services (temporary resi- dential programming in community-based set- tings) and extended support services (in-home respite provided to parents for a nominal co-pay); (b) leadership of various statewide com- mittees that provide consultation to LEAs regard- ing

(b) leadership of various statewide com- mittees that provide consultation to LEAs regard- ing educational programming, to coordinate parent input from the PACs and provide indepen- dent peer review of the assessment and interven- tion for students with very challenging behaviors; (c) coordination of staff training specific to ASD, and; (d) consultation to all school districts in the state on challenging students. DAP was established in 1976 after parents helped to pass laws defining many of the

students. DAP was established in 1976 after parents helped to pass laws defining many of the core elements of the program (specialized positions like the Statewide Director, specialized services like extended edu- cational and support services, additional staffing, extended school year, statewide committees, etc.).  See Also *   Applied Behavior Analysis (ABA) *   Educational Interventions *   Free Appropriate Public Education *   Individual Education Plan *   Local Educational Authority *

Free Appropriate Public Education *   Individual Education Plan *   Local Educational Authority *   Picture Exchange Communication System *   Regional Centers *   Statewide Service Programs  Delay, Deviance Versus Elizabeth Spencer College of Education and Human Ecology, The Ohio State University, Columbus, OH, USA  Definition Delay versus deviance refers to a debate about the nature of development in autism and other disor- ders. In general, a child who exhibits a develop- mental delay follows

in autism and other disor- ders. In general, a child who exhibits a develop- mental delay follows a progression of development found in the general population, but progress in development at a slower rate. In contrast, a child who exhibits deviance follows a progression of development that is different both in rate and sequence of progression. There is evidence to suggest that children with autism may follow a developmental progression that includes elements of both delay and deviance. In many

may follow a developmental progression that includes elements of both delay and deviance. In many children with autism, language develop- ment is often delayed but occurs in a progression similar to children with typical development. In other children, language development may also include deviant characteristics (e.g., echolalia). Many children with autism demonstrate deviance in the development of social and pragmatic skills. For example, some children with autism demon- strate deviance in

of social and pragmatic skills. For example, some children with autism demon- strate deviance in the development of social behaviors such as joint attention.  See Also *   Speech Delay  Demographics and the Age of Autism Diagnosis Judah Koller Seymour Fox School of Education, Clinical Child Psychology, The Hebrew University of Jerusalem, Jerusalem, Israel  Definition The role of social and demographic factors on the age at which children are diagnosed with ASD.  Historical Background A growing

factors on the age at which children are diagnosed with ASD.  Historical Background A growing body of literature has shed light on the nature of the rapidly rising prevalence of ASD. Several variables have been suggested in attempts to explain this trend, with the primary question focusing on whether there is an actual rise in incidence or if an increase in awareness has led to higher rates of diagnosis. Variables such as parental age and environmental pollut- ants have been suggested as

of diagnosis. Variables such as parental age and environmental pollut- ants have been suggested as influencers of diag- nostic trends (Durkin et al. 2008; Raz et al. 2015a). From the social perspective, contribut- ing factors appear to include increased awareness of ASD, changes in the tools used in screening and diagnosis, lower levels of stigma in societies, and shifts in the diagnostic criteria (Leonard et al. 2010). Taken together, the general consensus appears to be that, while the former

(Leonard et al. 2010). Taken together, the general consensus appears to be that, while the former factors may play a modest role, the rise in incidence is not a true increase in the rates of ASD but rather a social shift expressed in higher numbers of indi- viduals being accurately identified and diag- nosed (Isaksen et al. 2013). Given the above, it follows that these social factors affecting the rates of diagnosis of ASD play out in variable fashion across social and demographic contexts. In

rates of diagnosis of ASD play out in variable fashion across social and demographic contexts. In the ongoing work by the Centers for Disease Control and Prevention’s (CDC) Early Autism and Developmental Disabil- ities Monitoring (ADDM) Network, national prevalence estimates are based on the average across the states monitored. Within that data exists tremendous variability, strengthening the claim that social factors are central in determining rates of diagnosis (Christensen et al. 2019). In a

that social factors are central in determining rates of diagnosis (Christensen et al. 2019). In a recent publication evaluating data from 2014, the state with the lowest prevalence was Missouri, at approximately 1 in 104 children. The highest prevalence was found in New Jersey, at 1 in 35. Given the lack of any environmental or biological explanations for this stark discrepancy, it is most logically by the fact that New Jersey has more capacity in the form of trained experts with the ability to

by the fact that New Jersey has more capacity in the form of trained experts with the ability to diagnose young children as well as an early childhood education system capable of screening for and identify the children. Notably, even with increased awareness, more

accurate diagnostic measures, and reduced stigma, families and children that are not seen by trained professionals with specific expertise in the diagnosis of ASD will not be identified.  Current Knowledge Concurrent to the aforementioned increase in rates of diagnosis of ASD, the professional community’s ability to identify and diagnose ASD in early child- hood has improved dramatically. Much research now shows that an evidence-based diagnosis of ASD can be provided to most young children with a

now shows that an evidence-based diagnosis of ASD can be provided to most young children with a high degree of confidence between the ages 18 and 24 months and that such diagnoses are typically stable, meaning they remain accurate when the same child is reevaluated at older ages (Guthrie et al. 2013; Ozonoff et al. 2015). Despite these significant advances in our understanding of the early presentation of ASD and our ability to make accurate early diagnoses, the median age at which a child in the

of ASD and our ability to make accurate early diagnoses, the median age at which a child in the United States receives a diag- nosis of ASD is 52 months (Baio et al. 2018). A number of factors appear to contribute to this significant and costly delay in the age at which children are diagnosed. Children with less pro- nounced autism symptomatology are often diag- nosed later compared to children with higher levels of symptom severity, as are children with average verbal abilities, in contrast to

higher levels of symptom severity, as are children with average verbal abilities, in contrast to those who are minimally verbal (Salomone et al. 2016). The same is true for children from families with low socioeconomic status (SES) and those whose par- ents do not express concern regarding the presen- tation of primary symptoms. On a systemic level, children who do not have access to education and health services are often diagnosed later than peers who have such access (Daniels and Mandell

and health services are often diagnosed later than peers who have such access (Daniels and Mandell 2014; Mazurek et al. 2014; Shattuck et al. 2009). Children with comorbid health problems or behavioral difficulties are also likely to receive a diagnosis later, since parents or professionals could potentially attribute symptoms of ASD to these co-occurring conditions (Mandell et al. 2005). Such a situation often leads to an incorrect primary diag- nosis of another disorder or a missed diagnosis

situation often leads to an incorrect primary diag- nosis of another disorder or a missed diagnosis alto- gether due to diagnostic overshadowing (Fombonne 2005; Goldstein and Schwebach 2004). For similar reasons, children with autism who have experienced adverse childhood experiences, defined as stressful or traumatic experiences, are likely to receive a diagnosis of ASD later than peers who do not have these experiences (Berg et al. 2018).  Specifically related to SES, studies have consis-

do not have these experiences (Berg et al. 2018).  Specifically related to SES, studies have consis- tently found a link between high SES, represented by income, parents’ profession, and/or years of parental education, and increased rates of ASD (Durkin et al. 2017; Ng et al. 2017). The primary explanation proposed is that with higher parental education and financial means comes increased access to services, including ASD diagnostic ser- vices (Durkin et al. 2010, 2017; Thomas et al. 2012). Work

services, including ASD diagnostic ser- vices (Durkin et al. 2010, 2017; Thomas et al. 2012). Work in the United States has found chil- dren with ASD from families that speak English as a second language receiving school-based services later than children who come from English- speaking families. When they do eventually receive the services, they receive fewer hours each week than their peers (Nguyen et al. 2016). In contrast, some studies from outside the United States found no particular

(Nguyen et al. 2016). In contrast, some studies from outside the United States found no particular association between SES and age of diagnosis, and some even found an inverse relationship between family income or parental education and ASD incidence (Khaiman et al. 2015; Larsson et al. 2005). Interestingly, in countries with universal healthcare, such as Canada, Norway, Sweden, and France, where dis- parities in access to health services between socio- economic classes are low, higher ASD

dis- parities in access to health services between socio- economic classes are low, higher ASD prevalence was found in lower SES groups, or no link was found between SES and prevalence of ASD (Burstyn et al. 2010; Delobel-Ayoub et al. 2015; Rai et al. 2012). An extensive review conducted by Daniels and Mandell (2014) examined the association between SES, ethnic or race affiliation, and age of diagnosis. Of the 11 studies that inspected the relationship between SES and age of diagnosis, 5 found

Of the 11 studies that inspected the relationship between SES and age of diagnosis, 5 found an association between high SES and earlier diagnosis, while the remaining studies found no such association. Twelve studies exam- ined the association between ethnic or racial affil- iation and the age of diagnosis and revealed contradictory findings. Five of the 12 found that children belonging to ethnic or racial minorities were likely to receive a later diagnosis compared to children of nonminority

or racial minorities were likely to receive a later diagnosis compared to children of nonminority children, while 5 other studies did not find a correlation between these factors. The remaining two studies found mixed results, showing that children of the main ethnic group were likely to receive a later diagnosis compared to children of ethnic or race minorities. The researchers posit that these dyssynchronous findings can be attributed to variables that differ between the reviewed studies, such

findings can be attributed to variables that differ between the reviewed studies, such as study dura- tion, sampling method, and the geographic loca- tion of the study. The variable findings in this body of literature demand a more nuanced assess- ment of each individual study, which must each be interpreted within its particular respective context. For instance, a Norwegian study found that eth- nicity did not influence the age of diagnosis (Larsen 2015). However, it is imperative to con-

eth- nicity did not influence the age of diagnosis (Larsen 2015). However, it is imperative to con- textualize this finding within the political reality of Norway, where every child has access to health and developmental care at community healthcare centers, regardless of any ethnic difference.  As indicated above, societal shifts in aware- ness and understanding of ASD are clinically significant and relevant in societal contexts where children and families are able to access proper care. A

and relevant in societal contexts where children and families are able to access proper care. A consistent source of medical or developmental care is essential in order for children to be diagnosed in timely fashion (Emerson et al. 2016). Families with lower SES are also less likely to have such a consis- tent source of care, thereby minimizing the chance that developmental delays of any kind will be identified and targeted close within the optimal timeframe. It is noteworthy that the

kind will be identified and targeted close within the optimal timeframe. It is noteworthy that the association between consistent care and age of diagnosis was found to differ based on race (Emerson et al. 2016), with African American children’s age of diagnosis not decreasing in correlation with consistent care. This could potentially be explained by way of differences in parent and/or professional behavior. Professionals seeing young children of low SES African Americans may be slower to refer

behavior. Professionals seeing young children of low SES African Americans may be slower to refer the child for a full diagnostic evaluation. Alterna- tively, or simultaneously, the parents of these chil- dren maybe slower to push for such a referral or to question a “wait-and-see” approach.  Future Directions Further research and taking a more nuanced and subjective perspective on the process of screening and diagnosis are critical. The conflicting findings that exist in this body of literature

screening and diagnosis are critical. The conflicting findings that exist in this body of literature point to fact that we do not have a clear understanding of these issues. While some studies find strong associations between vari- ables such as SES and age of diagnosis, others do not. Without considering the context for these studies, we are unable to decipher the meaning of the body of work as a whole. For instance, while studies have examined differences between ethnic and racial groups within

For instance, while studies have examined differences between ethnic and racial groups within the United States, few have done so inter- nationally. A recent study from Israel (Koller et al. 2019) found that the Arab children diag- nosed in Jerusalem prior to the age of 6 were nearly all minimally verbal and displayed severe autism symptomatology. While small, this study highlights the fact that while large-scale, population-based studies are necessary to under- stand broader trends, more

that while large-scale, population-based studies are necessary to under- stand broader trends, more nuanced examina- tions of specific populations and regions are necessary in order to gain actionable data that can lead to the support of specific sectors. Significantly, the work done in this area has clear and direct relevance for public policy and community mental health. Efforts to raise aware- ness of ASD and improve capacity for identifica- tion of ASD by community professionals can assist in

of ASD and improve capacity for identifica- tion of ASD by community professionals can assist in the early diagnosis of children. The het- erogeneity of results seen across studies indicates that region-specific differences in screening, eval- uation, and diagnostic practice affect the age of diagnosis. The findings of studies conducted in specific geographical regions or municipalities should be conveyed to policymakers and stake- holders in order to utilize the findings as stepping- stones to

conveyed to policymakers and stake- holders in order to utilize the findings as stepping- stones to improved systems of public awareness, screening, and diagnosis. Continued improve- ments in these both research and research-driven practice may assist the provision of earlier ASD diagnoses and support, which could lead to improved developmental outcomes.  See Also *   Epidemiology *   Prevalence  Dendrite Claudia Califano Yale-New Haven Hospital, New Haven, CT, USA  Synonyms DNA  Definition A

Dendrite Claudia Califano Yale-New Haven Hospital, New Haven, CT, USA  Synonyms DNA  Definition A dendrite is one of the four main parts of neurons, which also include the cell body, the axon, and the axon terminals. The dendrite is the part of the neuron that receives incoming signals from other neurons. The signals come in the form of neurotransmitters that cross the area of the synapse between one neuron and another neuron’s dendrites. Neurotrans- mitters bind to receptors on the dendrites,

one neuron and another neuron’s dendrites. Neurotrans- mitters bind to receptors on the dendrites, and then the signal passes though the neuron to the cell body. Dendrites may have extensive branching, and each neuron often has multiple dendrites. The number of dendrites and thus the number of synapses vary with the functions of a neuron. The dendrites of one neuron may receive signals from thousands of other neurons. That one neuron then integrates many signals received and responds

from thousands of other neurons. That one neuron then integrates many signals received and responds accordingly. The instructions for the development and func- tioning of a living organism are contained in a molecule called deoxyribonucleic acid (DNA) which is a nucleic acid. The instructions are spelled out in a sequence or code of four chemical units called nucleobases (or bases for short). These are adenine, cytosine, guanine, and thy- mine, abbreviated as A, C, G and T, respectively. DNA is

are adenine, cytosine, guanine, and thy- mine, abbreviated as A, C, G and T, respectively. DNA is contained within nearly every cell of the human organism. Certain segments of the DNA molecule called genes contain the code for creat- ing the components of cells, most importantly, molecules called proteins (Alberts et al. 2002). James Watson and Francis Crick described the molecular structure of DNA in 1953 (Watson and Crick 1953). DNA is passed from one generation to the next. In humans, the

DNA in 1953 (Watson and Crick 1953). DNA is passed from one generation to the next. In humans, the DNA molecule is divided up into a set of smaller pieces corresponding to chromo- somes. Humans inherit 23 chromosomes from each parent, 22 of them are referred to as auto- somes and are numbered 1–22 and one is called a sex chromosome and is either a chromosome X or a chromosome Y. Thus, normal human cells con- tain 44 autosomes and 2 sex chromosomes. The chromosomes are paired in each cell. For

cells con- tain 44 autosomes and 2 sex chromosomes. The chromosomes are paired in each cell. For exam- ple, each cell will contain two copies of chromo- some 1, one from the mother (the maternal chromosome) and one from the father (the pater- nal chromosome). Each of a pair of autosomes will generally contain the same genes. However, the sequence of DNA at each of the genes will often vary slightly between individuals, and it is also now clear that the structure of the chromo- some, so-called

between individuals, and it is also now clear that the structure of the chromo- some, so-called copy number variations (CNVs), is also part of the normal complement of human genetic variation. A change in the sequence or structure of DNA which results in a deviation from the agreed upon reference genome may be referred to in various ways, including an allele, a variant, a variation, a polymorphism, or a mutation. Typically, the word polymorphism is used when one is referring to a change that is

or a mutation. Typically, the word polymorphism is used when one is referring to a change that is present in a percentage of the pop- ulation and mutation is taken to mean that the variation is rare and relates to a disease or phenotype.  See Also *   Chromosomal Abnormalities *   Copy Number Variation *   Dizygotic (DZ) Twins *   Karyotype *   Monozygotic (MZ) Twins  Dendritic Cells and Their Expression of Costimulatory Molecules in Children with Autism Spectrum Disorders Khaled Saad1, Mohamd

of Costimulatory Molecules in Children with Autism Spectrum Disorders Khaled Saad1, Mohamd A. Alblihed2, Abdulrahman A. Al-Atram3, Ahmed A. Abdel-Rahman4, Asmaa M. Zahran5 and Amira Elhoufey6,7 1Faculty of Medicine, Assiut University, Assiut, Egypt 2Department of Medical Biochemistry, School of Medicine, Taif University, Taif, Kingdom of Saudi Arabia 3Department of Psychiatry, College of Medicine, Majmaah University, Majmaah, Kingdom of Saudi Arabia 4Department of Neuropsychiatry, Faculty of

Majmaah University, Majmaah, Kingdom of Saudi Arabia 4Department of Neuropsychiatry, Faculty of Medicine, Assiut University, Assiut, Egypt 5Clinical Pathology Department, South Egypt Cancer Institute, Assiut University, Assiut, Egypt 6Department of Community Health Nursing, Faculty of Nursing, Assiut University, Assiut, Egypt 7Department of Community Health Nursing, Sabia University College, Jazan University, Jazan, Kingdom of Saudi Arabia  Background Autism spectrum disorder (ASD) encompasses

University, Jazan, Kingdom of Saudi Arabia  Background Autism spectrum disorder (ASD) encompasses early-onset neurodevelopmental mishaps afflicting about 1 in every 160 children world- wide. It develops through a complex set of etiol- ogies that involve immunological, environmental, and genetic factors (Jia et al. 2018a, Bjørklund et al. 2019). Individuals diagnosed with ASD may display a range of problem behaviors such as hyperactivity, poor attention, impulsivity, aggres- sion, self-injury,

of problem behaviors such as hyperactivity, poor attention, impulsivity, aggres- sion, self-injury, and tantrums. The lack of suc- cessful therapy, genetic heterogeneity, and the increasing incidence make it one of the most challenging disorders. At present, only some comorbid problems of ASD could be treated, but not the core manifestations (El-Rashidy et al. 2017; Cheng et al. 2017; Shaaban et al. 2018). The etiopathogenesis of ASD is complicated and debatable. Immunological abnormalities

et al. 2018). The etiopathogenesis of ASD is complicated and debatable. Immunological abnormalities have been recently linked with the pathology of ASD. The chemosensory immune system has a vital role in the process of neurodevelopment by regulation of the neuronal proliferation, plasticity, and synapse development. Besides, it removed the apoptotic neurons and contributed to numerous neurological activities (Wang et al. 2014; Bjorklund et al. 2016). Numerous revisions over the last 20 years

activities (Wang et al. 2014; Bjorklund et al. 2016). Numerous revisions over the last 20 years have recognized immune disor- ders, including both decreased immune functions and higher autoimmunity among children diag- nosed with ASD (see for details Bjorklund et al. 2016). Immune system abnormalities may have a role in autism development; however, there is no consensus regarding whether these disorders ini- tiate the onset of core manifestations or regulate the symptomatology and pathogenesis

ini- tiate the onset of core manifestations or regulate the symptomatology and pathogenesis of autism (Wang et al. 2014). Individuals with ASD are more susceptible to various types of infec- tions, asthma, allergies, and seizures. Also, autis- tic patients usually have peculiar reactions to vaccines and autoimmune diseases (Hsiao 2013; Wang et al. 2014; Bjorklund et al. 2016).  Dendritic Cells Dendritic cells (DCs) currently are known as a distinct hematopoietic lineage of myeloid cells,

Dendritic cells (DCs) currently are known as a distinct hematopoietic lineage of myeloid cells, together with monocytes, granulocytes, and mac- rophages. They originate from the bone marrow (BM) through specific ancestor subclasses and actively contributed to both adaptive and innate immunity and managing the equilibrium between tolerance and immunity. DCs are powerful phago- cytic cells and considered one of the most effec- tive specialized antigen-presenting cells (APCs) that are required for

one of the most effec- tive specialized antigen-presenting cells (APCs) that are required for initiation and spreading the immune responses (Rhodes et al. 2019). DCs are responsible for uptaking, processing antigens, and then presenting them to T-lymphocytes (Patente et al. 2019). DCs recognize antigens via Toll-like receptors, which are specific for certain molecules present in bacteria, fungi, viruses, and parasites (Patente et al. 2019). In the peripheral blood, DCs are immature that upon

viruses, and parasites (Patente et al. 2019). In the peripheral blood, DCs are immature that upon stimulation give rise to two active forms. Based on the functional and phenotypic features, DCs are classified into two lineages. The first type is myeloid dendritic cells (mDCs) CD11c+CD123 , also called conven- tional DCs, which present mainly in the peripheral blood and lymphoid tissues. mDCs represent the antigen-presenting dendritic cells that summit the adaptive immunity (Patente et al. 2019;

the antigen-presenting dendritic cells that summit the adaptive immunity (Patente et al. 2019; Rhodes et al. 2019). mDCs are highly specialized cells similar to monocytes and are secondly divided into mDC-1 cells which are the main stimulator of CD8+ cells, which is very important in antiviral and antitumor activity (Brewitz et al. 2017), and the less common mDC-2 cells which have several immunoregulatory functions. They are potent inducers for Th1, Th2, and Th17 immune responses. Also, mDC-2

functions. They are potent inducers for Th1, Th2, and Th17 immune responses. Also, mDC-2 activate T-regulatory cells in the gastrointestinal tract. In addition, mDC2 stimulate CD4+-naïve T-lymphocytes to express gut-homing molecules (Segura et al. 2012; Leal Rojas et al. 2017). The second type is plasmacytoid dendritic cells (pDCs) CD11c CD123+, which are found in small numbers in the peripheral blood. pDCs have a potential role as APCs, as they express co-stimulatory molecules and MHC II.

blood. pDCs have a potential role as APCs, as they express co-stimulatory molecules and MHC II. Also, they have an antiviral role through the production of interferon I and III and priming CD8+ T-lymphocytes and natural killer cells (Schlitzer et al. 2018; Rhodes et al. 2019).  Costimulatory Molecules B7 (CD80/ CD86) CD80 and CD86 are a group of cell surface gly- coproteins of the B7 family, structurally related to immunoglobulins. These molecules play an important role in the regulation of

related to immunoglobulins. These molecules play an important role in the regulation of innate and adaptive immune system (Rhodes et al. 2019). Previous studies have reported that B7-1 (CD80) and B7-2 (CD86) are the most characterized costimulatory molecules for activation of T-lymphocytes (Fujii et al. 2004; Schlitzer et al. 2018). CD80 is expressed in low levels on the surface of DCs, APCs and monocytes; however, CD86 is highly expressed in these cells. CD80 and CD86 can either stimulate

and monocytes; however, CD86 is highly expressed in these cells. CD80 and CD86 can either stimulate T-lymphocytes through binding to CD28 receptor or deactivate T-cells through binding to CTLA-4 (cytotoxic T- lymphocyte-associated antigen) receptor. CD80 and CD86 are exclusively essential in DCs’ acti- vation. When the MHC class II peptide on DCs interacts with T-helper cells, CD80 and CD86 are upregulated, allowing the activation of DCs and contact them to CD8+. This supports T-lymphocyte

upregulated, allowing the activation of DCs and contact them to CD8+. This supports T-lymphocyte differentiation into cytotoxic T-cell (Fujii et al. 2004; Zheng et al. 2004). As stated before, these costimulatory molecules have a pivotal role in DCs activation. This activation occurs through CD28 interactions with increase the mobility of DCs for migration and release of cytokines specifically IL-6, with activation of cellular proliferation, and inhibit apoptosis (Zheng et al. 2004; Schlitzer et

with activation of cellular proliferation, and inhibit apoptosis (Zheng et al. 2004; Schlitzer et al. 2018). On the other hand, these molecules have inhibitory effects on DCs through interaction with CTLA-4. This suppressive effect helps reg- ulatory T-lymphocytes to avert any immunologi- cal response to self-antigens (Fujii et al. 2004; Zheng et al. 2004).  Dendritic Cells and Costimulatory Molecules in Autism Spectrum Disorders In our previous work (Saad et al. 2017), we assessed the levels

in Autism Spectrum Disorders In our previous work (Saad et al. 2017), we assessed the levels of DCs and CD86 and CD80 costimulatory molecules in children with ASD and compared to normal children:  Myeloid Dendritic Cells (mDCs) Our study showed significantly augmented levels of mDCs in children with ASD when com- pared to typically healthy children (2.44   0.20 vs. 1.54   0.09; p = 0.006). Furthermore, we noticed positive correlations between the frequency of mDCs and autism severity (p < 0.01),

we noticed positive correlations between the frequency of mDCs and autism severity (p < 0.01), stereotypy (p < 0.05), social under- standing (p < 0.001), emotional response (p < 0.01), and hyperactivity (p < 0.05), as mea- sured on CARS and ABC scales (Saad et al. 2017). In line with our findings, Breece et al. (2013) reported significantly increased mDCs frequencies in autistic children as compared to normal controls (4.6%   0.41 vs. 3.70%   0.38; p = 0.03). They found the percentages of mDCs

to normal controls (4.6%   0.41 vs. 3.70%   0.38; p = 0.03). They found the percentages of mDCs were higher by 25% to 40% in autistic patients when compared to normal children. Besides, they found significant positive correlations between the frequency of mDCs and stereotypic behavior (p = 0.02; effect size = 0.43) and the severity of GIT symptoms especially constipation (p = 0.002; effect size 1.85) (Breece et al. 2013). In addition, they reported significant positive associations between mDCs

(Breece et al. 2013). In addition, they reported significant positive associations between mDCs and the volume of the left amygdala (p = 0.004), and right amygdala (p = 0.02), in autistic children after adjustment of sex and age of the patients’ group.  Plasmacytoid Dendritic Cells (pDCs) In our study, pDCs’ frequencies were higher in autistic patients when compared to controls (1.98%   0.35 vs. 1.18%   0.05; p = 0.036). Furthermore, we found a positive association between mDCs and autism

vs. 1.18%   0.05; p = 0.036). Furthermore, we found a positive association between mDCs and autism severity (p = 0.05). However, we could not find any correlations with autism core manifestations and pDCs (Saad et al. 2017). Contrary to our results, Breece et al. (2013) reported comparable frequencies of pDCs in ASD patients and typically developing controls. They reported significant correlations between pDCs percentages and the right amygdala (p = 0.03) and left amygdala volumes (p = 0.02)

between pDCs percentages and the right amygdala (p = 0.03) and left amygdala volumes (p = 0.02) (Breece et al. 2013).  Costimulatory Molecules CD80 and CD86 Our data showed a significant upregulation in the expression of CD80 (49.67   4.67 vs. 23.16   1.39; p = 0.001) and CD86 (55.37   2.94 vs. 39.42   4.7; p = 0.001) costimulatory molecules on the entire DCs in autistic children when compared to control group. In addition, the mean fluorescent intensity of CD86+ (149.36   9.52 vs. 111.26   8.26;

group. In addition, the mean fluorescent intensity of CD86+ (149.36   9.52 vs. 111.26   8.26; p = 0.003) and CD80+ (76.07   3.18 vs. 52.05   3.59; p = 0.001) were significantly higher in ASD group than controls (Saad et al. 2017). For the first time, our results showed an inverse association between the frequencies of both types of DCs and vitamin D levels in autistic children. Recently, many pieces of research and reviews focused on the role of vitamin D in CNS and immunological disorders (Saad

of research and reviews focused on the role of vitamin D in CNS and immunological disorders (Saad et al. 2016; Bjørklund et al. 2016, 2019; Jia et al. 2018a). In addition to the well-known metabolic functions of vitamin D in bone and mineral metabolism, plenti- ful studies reported that vitamin D has several functions in the process of brain development by affecting the axonal connectivity and neuronal dif- ferentiation. In ASD, previous studies have shown significant associations between

and neuronal dif- ferentiation. In ASD, previous studies have shown significant associations between vitamin D deficiency and increased risk of autism (for details see Jia et al. 2018b). Additionally, vitamin D deficiency during pregnancy was associated with numerous adverse effects on the fetus, e.g., intra- uterine growth retardation (Bjorklund et al. 2016; Jia et al. 2018b). Vitamin D is a key modulator of the immune system, playing an important physio- logical role in the regulation of both

modulator of the immune system, playing an important physio- logical role in the regulation of both adaptive and innate immunity. Vitamin D is shared in the process of DC maturation and affected their functions through multiple mechanisms. In DCs, vitamin D can make a resistant phenotype with low HLA- DR, CD80, and CD86 expressions with a high ratio of interleukin10/interleukin12p70 (Ferreira et al. 2015). Furthermore, the differentiation of DCs in the presence of active form of vitamin D

et al. 2015). Furthermore, the differentiation of DCs in the presence of active form of vitamin D (1,25D3- DCs) leads to failure of DCs to stimulate auto- reactive T-lymphocytes, activating in its place antigen-specific T-regulatory cells resulting in induction of infectious tolerance and pre- servation of DC tolerogenic response (Ferreira et al. 2014, 2015).  Conclusion Taken together, the previous data suggest many systemic immune abnormalities in patients with ASD. Significant variations in

data suggest many systemic immune abnormalities in patients with ASD. Significant variations in the frequencies and functions of the myeloid lineage cells, specifically DCs, macrophages, and monocytes, have been extensively investigated in many types of research in children with ASD (see Bjorklund et al. 2016 for details). We suggested that DCs may play a role in the pathogenesis of ASD. However, the exact mechanism of the correlations of DCs and their costimulatory molecules in ASD remains to be

exact mechanism of the correlations of DCs and their costimulatory molecules in ASD remains to be elucidated.  Dental Care Ben Popple1 and Fred R. Volkmar2 1White Oak Pediatric Dentistry, Newnan, GA, USA 2Child Study Center, Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology, Yale Child Study Center, School of Medicine, Yale University, New Haven, CT, USA  Definition Dental care is just as important (if not more impor- tant) for children with autism. Unfortunately, var-

care is just as important (if not more impor- tant) for children with autism. Unfortunately, var- ious factors make attaining adequate dental care challenging for children with autism. While par- ents are understandably reluctant to stress their child – particularly a child with oral sensitivities – lack of dental care early in life can lead to major long-term health problems (Volkmar and Wiesner 2009).  Historical Background As noted elsewhere in this volume, a considerable body of work on the

2009).  Historical Background As noted elsewhere in this volume, a considerable body of work on the nature of autism and related conditions (Autism Spectrum Disorders, ASDs) exists. These conditions are characterized by major problems in social interaction, communica- tion, and behavior. These individuals range from intellectually deficient to above average IQ. Unfortunately, deficits described above can make providing quality dental health care difficult and unpredictable (Stein et al. 2014). In

can make providing quality dental health care difficult and unpredictable (Stein et al. 2014). In addition to difficulties completing dental treatment, parents also have difficulty accessing care (Kogan et al. 2008) or may avoid care because of stress related to appointment experience (Weil and Inglehart 2012). For these reasons, managing their oral health can be very challenging for health care providers.  Current Knowledge As with regular medical care, establishing a “den- tal home” is a major

Current Knowledge As with regular medical care, establishing a “den- tal home” is a major step forward in providing comprehensive ongoing dental care for children with autism (Nowak and Casamassimo 2002). Unfortunately, finding a dental home can be diffi- cult because very few general dentists are com- fortable treating these individuals because of behavior challenges. Some sources report fewer than one in ten general dentists will treat individ- uals with special health care needs (Casamassimo

one in ten general dentists will treat individ- uals with special health care needs (Casamassimo et al. 2004). As a result, individuals with autism are often forced to visit multiple offices before finding a dentist who is willing to treat them. Frustration associated with this process can be avoided when patients specifically seek out a pediatric dentist to treat their child’s dental needs. Pediatric dentists complete a 2-year resi- dency program in addition to dental school. In residency, they

dentists complete a 2-year resi- dency program in addition to dental school. In residency, they learn to provide dental care for infants and children through adolescence, includ- ing patients with special health care needs. Many pediatric dentists will continue to see patients with special health care needs such as autism well into adulthood. As patients get older, they may start to develop some oral health needs that pediatric den- tists are not comfortable addressing. Pediatric dentists can

oral health needs that pediatric den- tists are not comfortable addressing. Pediatric dentists can be a helpful resource for finding care- givers who treat more adult needs and are com- fortable treating patients with autism. When searching for a pediatric dentist, parents should be aware that locating a pediatric dentist currently accepting new patients might be difficult (Capozza 2012). The availability of pediatric den- tal practitioners varies widely by state. Addition- ally, lower

The availability of pediatric den- tal practitioners varies widely by state. Addition- ally, lower reimbursement by state insurance programs like Medicaid may pose further obsta- cles for care. The American Academy of Pediatric Dentistry has developed a provider search engine to help parents find pediatric dentists in their area (http://www.aapd.org/finddentist/).  Oral Health Concerns Individuals with ASD experience many oral health conditions requiring management by dental profes- sionals

with ASD experience many oral health conditions requiring management by dental profes- sionals similar to the general population. Like the general population, the most commonly reported oral health concern individuals with ASD experi- ence is dental decay (Stein et al. 2012). In addition to dental decay, other commonly reported oral health problems include periodontal disease, dental trauma related to coordination problems, and dental trauma related to self-injury (Volkmar and Wiesner 2009).

to coordination problems, and dental trauma related to self-injury (Volkmar and Wiesner 2009). Individuals with ASD also experience orthodontic problems like anterior open bite, crowding, and diastema (Delli et al. 2013). It is important to understand that dental decay is an enormous problem for all children in the United States regardless of health status. Dental decay is the most common chronic childhood disease today with an estimated 16 million chil- dren currently affected. Oral disease is

childhood disease today with an estimated 16 million chil- dren currently affected. Oral disease is responsible for children missing 51 million school hours and parents missing 25 million work hours annually. Children from low-income families have signifi- cantly more untreated decay than the rest of the population. Considering the high rate of decay experienced by the general population, one may expect indi- viduals with autism to also experience a high rate of dental decay. Current studies,

expect indi- viduals with autism to also experience a high rate of dental decay. Current studies, however, do not give clear confirmation that this is the case. Although it is generally agreed that there is a higher risk for dental caries in ASF although data addressing this is rather limited likely related to differences in samples studied (see Loo et al. 2008). Caries prevention in this population is an obvious priority.  Prevention While the patient, parents, and dentist play the primary role

is an obvious priority.  Prevention While the patient, parents, and dentist play the primary role in prevention of dental disease, all members of the health care team need to be aware of dental caries prevention strategies. Establish- ment of the dental home is the first step in this process preventing dental decay (Nowak and Casamassimo 2002). Ideally, the dental home should be established within 6 months of the eruption of the first tooth or no later than 1 year of age. Similarly, the medical

6 months of the eruption of the first tooth or no later than 1 year of age. Similarly, the medical home should also be established at this time. One goal of the dental home is to break the current cycle of problem- initiated care seeking. The dental home works to help establish good oral health practices through patient and parent education. The dental home also identifies dental disease early in the disease process when it can be most easily managed. The dental home is also responsible for

in the disease process when it can be most easily managed. The dental home is also responsible for referral to the appropriate specialist when the patient’s dental needs are beyond the scope of practice of the dental home. Caries risk assessment is a tool that uses caries risk indicators to identify habits that are likely to result in the development of dental decay. Identi- fying these high-risk habits allows preventive strategies to be customized for each patient, so dental decay can be

habits allows preventive strategies to be customized for each patient, so dental decay can be avoided and/or the decay process can be stopped when it is experienced (AAPD 2013). This is especially helpful for patients with ASD because of how little we know about this population’s caries experience and the many caries risk indicators with which these patients can present.  Beyond being broadly classified as high caries risk because of special needs status, individuals with autism also have risk

as high caries risk because of special needs status, individuals with autism also have risk factors specifically related to their disorder. Some risk factors include poor oral hygiene, detrimental oral behaviors, medication-induced xerostomia, concurrent med- ical diagnoses, low cognitive level, poor dietary habits, gastric reflux, a preference for soft/sweet foods, use of sweets for behavior modification, and requiring help with tooth brushing. Some risk factors occur more commonly than others in

and requiring help with tooth brushing. Some risk factors occur more commonly than others in this population, but no child will display exactly the same risk factors. The next strategy for preventing dental decay is increasing the patient and caregiver’s knowl- edge through education (Klein and Nowak 1998). Caregivers and patients should have a basic understanding of how dental decay occurs so they can be proactive in making good oral hygiene decisions. Everyone involved in the patient’s care

can be proactive in making good oral hygiene decisions. Everyone involved in the patient’s care should be aware of the four factors that must come together for a cavity to form, i.e., presence of teeth, the presence of bacteria, the presence of a nutrition source for the bacteria, and time for the decay to develop. While the presence of a tooth and time cannot be modified easily, the other two factors can be. The first modifiable variable is the level of cariogenic bacteria in the mouth. The

factors can be. The first modifiable variable is the level of cariogenic bacteria in the mouth. The second factor is the level of fermentable carbohy- drates present in the oral environment (Featherstone 2004). Bacteria levels can be reduced through good oral hygiene (brushing twice per day with fluoride toothpaste and flossing once per day). Ferment- able carbohydrates can be reduced through diet control (avoiding foods that are especially cario- genic). Caregivers have total control of diet in

control (avoiding foods that are especially cario- genic). Caregivers have total control of diet in this situation and can help prevent decay by drastically reducing fermentable carbohydrates in the diet. In the case of a higher cognitively functioning indi- vidual, the child may have more independence when it comes to food choices. With this scenario, effective oral hygiene skills can be taught, there- fore reducing bacteria level in the oral environment. While diet and oral hygiene can both

there- fore reducing bacteria level in the oral environment. While diet and oral hygiene can both be targeted to reduce caries risk, improving oral hygiene may be the best way to reduce caries risk in the autistic population. Difficulty with home care can be explained by many of the same reasons, and treatment in the dental clinic is also difficult. Tooth brushing can cause prob- lems with individuals who have oral sensitivity, poor motor control, poor understanding, and lack of interest.

who have oral sensitivity, poor motor control, poor understanding, and lack of interest. Fluoride is safe and effective at reduc- ing tooth decay when used as directed (Volkmar and Wiesner 2009). In fact, the Center for Disease Control and Prevention considers water fluorida- tion to be one of the ten greatest public health achievements of the twentieth century with more than 150 million Americans benefiting from fluo- ridated water. If there is concern that a patient may swallow toothpaste, extra

benefiting from fluo- ridated water. If there is concern that a patient may swallow toothpaste, extra care should be taken to make sure the proper amount of toothpaste is used during each brushing session. Children under the age of 2 should only have a smear of toothpaste applied to the toothbrush, while children over the age of 2 can use a pea-sized drop of toothpaste each time they brush (Guidelines on Fluoride Therapy 2014). Visual teaching can also be used to help improve daily oral hygiene

on Fluoride Therapy 2014). Visual teaching can also be used to help improve daily oral hygiene skills. Studies using a simple photo storybook to outline home care and in office procedures have helped improve proce- dural success (Volkmar and Wiesner 2009). Equally as important, in one study, parents saw the value in the intervention and continued using the storybook when the study ended (Backman and Pilebro 1999). For the uncooperative child, various strategies may be employed, e.g., three-sided

Pilebro 1999). For the uncooperative child, various strategies may be employed, e.g., three-sided toothbrush. The three-sided toothbrush allows the parent to clean the buccal, lingual/palatal, and occlusal sur- faces of the tooth all at once, reducing brushing time and increasing the chance of cleaning all tooth surfaces. Another helpful tool is the mouth prop. Mouth props are placed on the opposite side of the mouth from the side being brushed to pre- vent the child from biting down. Mouth

side of the mouth from the side being brushed to pre- vent the child from biting down. Mouth props can be as simple as a stack of tongue blades taped together or the handle end of a toothbrush. Mouth props can also be purchased online from special needs dental supply websites. Finally, floss sticks and interproximal brushes can be used instead of traditional dental floss. These products may be easier to use when flossing a difficult child, because they can be used with one hand.  Appointment

easier to use when flossing a difficult child, because they can be used with one hand.  Appointment Preparation and the Dental Visit Challenges for office visits for the child with ASD arise given the children often have difficulties with change, have limited communication skills, can be highly anxious, and variably related socially. These children may dislike being touched and may be alarmed by unusual sounds or bright lights. Accord- ingly, many behavior guidance techniques com- monly used by

sounds or bright lights. Accord- ingly, many behavior guidance techniques com- monly used by dental professionals may be of limited use (Marshall et al. 2007). Thus success in the dental chair is largely dependent on preparation for the visit. Caregivers, like parents and therapists, can also do many things to help prepare the patient for the visit using exercises to familiarize the patient with what to expect at the appointment by using visual aids and appointment practice (Pilebro and Backman

to expect at the appointment by using visual aids and appointment practice (Pilebro and Backman 2005; Volkmar and Wiesner 2009). Parents are often quite good predictors of the child’s behavior. Simply asking things like whether the child can sit for a haircut, if the child is toilet trained, and how successful tooth brushing is at home can serve as initial predictors of cooperativeness. It is important to understand parental concerns or ques- tions, e.g., relative to fluoride, diet, behavior

important to understand parental concerns or ques- tions, e.g., relative to fluoride, diet, behavior man- agement strategies, and so forth. Parents may have questions about mercury or use of nitrous oxide, radiation, and other materials (Rada 2010). Strate- gies that can help include predict in use of the dental chair, and visual strategies have been successfully used to manage a range of problems and enhance compliance with health care and make use of the typical strengths children with autism

and enhance compliance with health care and make use of the typical strengths children with autism have in the area of nonverbal, visual, static, and sequential information presentation (Hogdon 1995).  Story- books can demonstrate what the dental office, waiting room, and treatment rooms look like. The storybook can also show pictures of dental instru- ments and pictures of what the dental providers look like. These materials are readily prepared on today’s computers and can be used to

providers look like. These materials are readily prepared on today’s computers and can be used to facilitate cooperation. Realistic goals should be set for each appointment. Staff should notice patterns of success and gradually build upon these. Understanding and consistency on the part of care providers is important, e.g., sched- uling so as to avoid waiting time. For the dental visit, applied behavior analysis (ABA) strategies can help interpret and modify behavior. It is also important for

behavior analysis (ABA) strategies can help interpret and modify behavior. It is also important for providers to understand that poor behavior can be unintentionally negatively reinforced the same way positive behavior can be reinforced. Children with autism often demonstrate oral defensiveness, escape, and avoidance behaviors at their dental visit attempting to avoid treatment (Delli et al. 2013). Providers must understand they are only reinforcing this behavior by allowing patients to avoid

Providers must understand they are only reinforcing this behavior by allowing patients to avoid treatment, e.g., patient is experiencing a stimulus, reacting, and is rewarded when the undesired stimulus is removed. Introducing treat- ment in steps with desensitization visits can also help patients have a positive experience. The first time the patient comes to the office, the visit could simply consist of sitting in the waiting room. From there, the patient may walk back to a treat- ment room.

of sitting in the waiting room. From there, the patient may walk back to a treat- ment room. Patients continue to experience more each visit until the desired procedure is com- pleted. Although this strategy can be effective, it is also very time consuming and may be difficult to implement in the private dental office. How- ever, desensitization visits can be planned to min- imize the amount of time spent on visits that are not truly benefiting the patient. When the first two visits just require

spent on visits that are not truly benefiting the patient. When the first two visits just require visiting different parts of the office, appointments are quick and do not require significant time commitment for the dentist or office staff. Given problems in relating and communication, it is important to realize that the frequent patterns of becoming overly polite when a person is having problem may be less helpful that direct instruction, e.g., instead of saying, “Please come sit in the chair so we

less helpful that direct instruction, e.g., instead of saying, “Please come sit in the chair so we can look at your teeth,” the provider may have more success saying, “Sit here.” Another way pos- itive outcomes may be increased is by wearing a clear face shield instead of the traditional cloth facemask. Eye-tracking studies show that individ- uals with autism spend much more time focused on the mouth. Wearing a clear face shield allows indi- viduals with autism to continue to gather informa-

mouth. Wearing a clear face shield allows indi- viduals with autism to continue to gather informa- tion from the dentist’s lower face throughout the procedure. Staff should be aware of sensory over- stimulation, e.g., the movement of the dental chair may cause anxiety, and this could be avoided by allowing the patient to stand while the chair reclines. Use of unscented/unflavored products can be help- ful. minimize these obstacles. Applying dental prod- ucts to a few teeth and quickly wiping

help- ful. minimize these obstacles. Applying dental prod- ucts to a few teeth and quickly wiping away the excess as each tooth is cleaned can minimize sensa- tion. “Paste-less” prophylactic angles can be extremely helpful when treating patients who cannot tolerate the sensation or taste of prophylactic paste in their mouth. If use of suction is a problem, gauze can be used to soak up saliva and water. The sound of the high-speed hand piece can also be distressing. When patients are having

and water. The sound of the high-speed hand piece can also be distressing. When patients are having trouble tolerating bright light, dental mirrors with lights on the handle can be invaluable treatment tools.  Completing dental radiographs is a very impor- tant portion of the dental visit and is an essential part of the dental exam and diagnosis. Dental radiographs provide information about the oral cavity that cannot be discerned any other way. Radiographs can be the deciding factor in deter-

cavity that cannot be discerned any other way. Radiographs can be the deciding factor in deter- mining whether or not a patient needs treatment in the operating room and how much operating room time will be needed. If radiographs cannot be completed, the dental provider must schedule extended operating room time for the patient in case the patient has extensive interproximal dental decay that cannot be visualized clinically. Many of the same strategies previously mentioned can be used in taking

be visualized clinically. Many of the same strategies previously mentioned can be used in taking radiographs. It traditional bite- wing radiographs are impossible to complete, pro- viders should consider attempting panoramic bitewings. Some papers report that the protective stabi- lizer (papoose) is used in as high as 44% of the time with children who have ASD. If providers are considering placing the child in a papoose, it should be discussed with parents at length before starting treatment.

the child in a papoose, it should be discussed with parents at length before starting treatment. Every effort should be made to ensure the parent understands the purpose of the protective stabilizer and why it is used (9Eatonk 2005).  Pharmacological Treatment Aids If other strategies are not successful, pharmaco- logical management of behavior should be con- sidered. There are many sedation protocols available for in-office treatment ranging from minimal to deep sedation. Services offered

protocols available for in-office treatment ranging from minimal to deep sedation. Services offered differ based on the provider’s training, experience, and patient factors such as previous sedation experi- ences, health history, and current health status. In office, sedation is traditionally reserved for healthy patients with no medical complications. Outcomes of sedation procedures can be unpredictable even with the most experienced providers, and unpredictable and paradoxical reaction to some

even with the most experienced providers, and unpredictable and paradoxical reaction to some sedative agents have been noted (Volkmar and Wiesner 2009). If all other efforts fail, one option is generally anesthesia; treatment must be completed in the operating room under general anesthesia, and parents are often comfort- able with this approach (Cuvo 2010). In such cases, consultation with the primary health care provider is important. The decision to treat a patient under general anesthesia

primary health care provider is important. The decision to treat a patient under general anesthesia should not be an excuse to abandon intervention strategies that have been discussed to improve behavior at the dental visit. Behavior is less likely to improve over time in children with ASD than the general population, but improved behavior is possible with hard work. Dental providers and caregivers should continue to work towards successful com- pletion of the dental visit in the office

caregivers should continue to work towards successful com- pletion of the dental visit in the office environment.  Future Directions Regardless of caries rate experienced by the autis- tic population, all children are at risk for develop- ing dental decay. For that reason, every child requires routine preventative dental care. When treating individuals with autism, it is important to remember that every patient will present with unique challenges and will respond differently to various

that every patient will present with unique challenges and will respond differently to various intervention strategies (Delli et al. 2013). Providers must realize that an intervention strat- egy may be very effective for one patient and totally ineffective for another. Given the wide range in syndrome expression, clearly there is no single “cook book” to success when treating indi- viduals with ASD.  See Also *   Applied Behavior Analysis (ABA) *   Dental Care *   Medical Home and ASD  Denver

ASD.  See Also *   Applied Behavior Analysis (ABA) *   Dental Care *   Medical Home and ASD  Denver Development Screening Test (DDST) Robin Hansen Pediatrics, Center for Excellence in Developmental Disabilities, UC Davis M.I.N.D. Institute, Sacramento, CA, USA  Synonyms DDST; Denver II  Description The Denver Developmental Screening Test, first published in 1967 (Frankenburg and Dodds 1967), was one of the first screening tools devel- oped to identify young children at risk for devel- opmental

one of the first screening tools devel- oped to identify young children at risk for devel- opmental delay and disability. It’s format was similar to the construction of pediatric growth charts, with 105 developmental items for children from birth to 6 years of age aligned chronologi- cally along horizontal age lines, divided into four discrete developmental domains: personal-social, fine motor-adaptive, language, and gross motor. Bar graphs for each developmental item reflect the ages at which

language, and gross motor. Bar graphs for each developmental item reflect the ages at which 25%, 50%, 75%, and 90% of typi- cally developing children in the standardization sample completed the task. Because of criticisms related to low sensitivity in identifying children with speech and language delays, it was revised to add more language items, restandardized, and remarketed as the Denver II in 1992 (Frankenburg et al. 1992), retaining a similar for- mat to the DDST. Both are administered by

1992 (Frankenburg et al. 1992), retaining a similar for- mat to the DDST. Both are administered by indi- viduals who have trained to proficiency using training tapes/DVD or the administration manual, with standardized toys such as blocks, rattles, and pictures included in the toolkit. It is estimated to take 10–20 min to administer and score. Several options regarding item administration were devel- oped and evaluated. The most commonly used approach in primary care settings included admin-

devel- oped and evaluated. The most commonly used approach in primary care settings included admin- istering at least three items in each domain whose bar graphs are closest to but completely to the left of the age line, indicating items that over 90% of typically developing children should be able to do by that age. Any of these items not successfully completed are considered a delay; items where the age line passes through the 75–90% section of the bar graph which the child cannot accomplish

the age line passes through the 75–90% section of the bar graph which the child cannot accomplish are scored “cautions,” and an algorithm for determin- ing normal, abnormal (two or more delays), and questionable (two cautions or one delay) results is provided in the manual.  Historical Background The DDST is most important for its historical background rather than as a currently recommended screening tool. It was the first developmental screening tool for young children that was widely marketed

tool. It was the first developmental screening tool for young children that was widely marketed to the primary care medical community as well as child care pro- viders and other child health professionals. It played a significant role in widespread recogni- tion of the importance of early identification and intervention from a public health and primary care perspective. The role of parents as accurate observers of their children’s behaviors was also recognized by the developers of the DDST and

observers of their children’s behaviors was also recognized by the developers of the DDST and subsequent screening materials such as the Den- ver Prescreening Developmental Questionnaire and the Denver II. The DDST and Denver II became widely used in the United States and internationally, being translated and restandardized in many countries.  Psychometric Data The DDST was originally standardized on 1,036 children from Denver, age 1–72 months, with reported co-positivity scores of .92 and

on 1,036 children from Denver, age 1–72 months, with reported co-positivity scores of .92 and co-negativity scores of .99, using the Bayley Men- tal and Psychomotor Scales and Stanford-Binet Intelligence Scales as criterion tests. Subsequent studies of concurrent and predictive validity, reviewed by Meisels (1989), found that while the specificity remained high (.87–1.0), the sensi- tivity was unacceptably low (.13–.46), particularly when children were reevaluated 14 months to 6 years later

unacceptably low (.13–.46), particularly when children were reevaluated 14 months to 6 years later (.18). The Denver II was standardized on 2,096 children 0–6.5 years of age, half from Denver and half from rural Colo- rado. Inter-rater reliability and test-retest validity were reported to be .90 or greater (Frankenburg et al. 1992). Subsequent studies showed that, with these revisions, the Denver II had acceptable sen- sitivity of .83 reported by Glascoe et al. (1992), but specificity dropped to

II had acceptable sen- sitivity of .83 reported by Glascoe et al. (1992), but specificity dropped to .43, shifting concerns about the DDST failing to identify children with significant delays to concerns about overreferral of typically developing children using the Denver II.  Clinical Uses The Denver II is still marketed by Denver Devel- opmental Materials Inc. However, it is not included in the most recent American Academy of Pediatrics guidelines for general developmental surveillance and

most recent American Academy of Pediatrics guidelines for general developmental surveillance and screening as a recommended tool (2006) nor in the AAP guidelines for ASD screen- ing (2007), as it has never been evaluated as a screening tool for ASD. Its format, however, con- tinues to be useful for pediatric educators as a way of visually illustrating the importance of assessing different developmental domains simultaneously in individual children, of tracking development over time, and of

domains simultaneously in individual children, of tracking development over time, and of showing the variability in ages at which different developmental items “typi- cally” occur.  Deoxyribonucleic Acid Paul El-Fishawy State Laboratory, Child Study Center, Yale University, New Haven, CT, USA  Synonyms DNA  Definition The instructions for the development and func- tioning of a living organism are contained in a molecule called deoxyribonucleic acid (DNA) which is a nucleic acid. The

are contained in a molecule called deoxyribonucleic acid (DNA) which is a nucleic acid. The instructions are spelled out in a sequence or code of four chemical units called nucleobases (or bases for short). These are adenine, cytosine, guanine, and thy- mine, abbreviated as A, C, G and T, respectively. DNA is contained within nearly every cell of the human organism. Certain segments of the DNA molecule called genes contain the code for creat- ing the components of cells, most importantly,

molecule called genes contain the code for creat- ing the components of cells, most importantly, molecules called proteins (Alberts et al. 2002). James Watson and Francis Crick described the molecular structure of DNA in 1953 (Watson and Crick 1953). DNA is passed from one generation to the next. In humans, the DNA molecule is divided up into a set of smaller pieces corresponding to chromo- somes. Humans inherit 23 chromosomes from each parent, 22 of them are referred to as auto- somes and are

Humans inherit 23 chromosomes from each parent, 22 of them are referred to as auto- somes and are numbered 1–22 and one is called a sex chromosome and is either a chromosome X or a chromosome Y. Thus, normal human cells con- tain 44 autosomes and 2 sex chromosomes. The chromosomes are paired in each cell. For exam- ple, each cell will contain two copies of chromo- some 1, one from the mother (the maternal chromosome) and one from the father (the pater- nal chromosome). Each of a pair of

(the maternal chromosome) and one from the father (the pater- nal chromosome). Each of a pair of autosomes will generally contain the same genes. However, the sequence of DNA at each of the genes will often vary slightly between individuals, and it is also now clear that the structure of the chromo- some, so-called copy number variations (CNVs), is also part of the normal complement of human genetic variation. A change in the sequence or structure of DNA which results in a deviation from the

variation. A change in the sequence or structure of DNA which results in a deviation from the agreed upon reference genome may be referred to in various ways, including an allele, a variant, a variation, a polymorphism, or a mutation. Typically, the word polymorphism is used when one is referring to a change that is present in a percentage of the pop- ulation and mutation is taken to mean that the variation is rare and relates to a disease or phenotype.  See Also *   Chromosomal Abnormalities *

variation is rare and relates to a disease or phenotype.  See Also *   Chromosomal Abnormalities *   Copy Number Variation *   Dizygotic (DZ) Twins *   Karyotype *   Monozygotic (MZ) Twins Lawrence David Scahill Nursing and Child Psychiatry, Yale Child Study Center, Yale University School of Nursing, New Haven, CT, USA

Marcus Autism Center, Children’s Healthcare of Atlanta, Atlanta, GA, USA Department of Pediatrics, Emory University, Atlanta, GA, USA  Synonyms Divalproex; Valproic acid  Indications Valproic Acid: Valproic acid is a simple carbonic acid. It is available in several preparations including divalproex and valproic acid. It appears to exert its beneficial effects by interfering with the repetitive firing of neurons. This appears to be especially relevant for its treatment of seizures. Valproic acid

of neurons. This appears to be especially relevant for its treatment of seizures. Valproic acid is approved for the treatment of seizures, migraine, and for the treatment of bipolar disorder.

Clinical Use (Including Side Effects) It has been studied in children and adults with bipolar illness and appears to be an effective treatment. Valproic acid is often well tolerated, but it can have a range of adverse effects. Sedation and gastrointestinal disturbance with vomiting are common particularly at the start of treatment. Other more significant adverse effects include thrombocytopenia, pancreatitis, and rarely hepatotoxicity. These more severe adverse effects require monitoring of

pancreatitis, and rarely hepatotoxicity. These more severe adverse effects require monitoring of drug level in the blood, platelet counts, amylase, and liver enzymes. To date, valproic acid has not been well studied in children or adults with autism spectrum disorders. There are some open case studies suggesting benefit for aggression and agitation; however, these studies have not compared valproic acid to placebo.

See Also ▶Mood Stabilizers  Oren Shtayermman New York Institute of Technology Mental Health Counseling, Old Westbury, NY, USA

Synonyms Employment services; Office of rehabilitation; Vocational counseling  Definition The Department of Vocational Rehabilitation is a broad marker for an organization that provides services for persons identified with developmental disabilities (Rehabilitation Act of 1973, Public Law 93–112 93rd Congress, H. R. 8070 September 26, 1973). In the act, every state arranges a bureau of vocational rehabilitation services. In NY State, the office is frequently mentioned as VESID (VESID is an

rehabilitation services. In NY State, the office is frequently mentioned as VESID (VESID is an acronym for Vocational and Educational Services for Individuals with Disabilities). In all states, the Department of Vocational Rehabilitation (DVR) delivers occupation services and treatment to those with disabilities who want to work but experience obstacles to work due to physical, sensory, and/or mental disability. A DVR therapist works with every person to develop an individually tailored

mental disability. A DVR therapist works with every person to develop an individually tailored strategy of services intended to aid them in reaching their employment goal. The aid may contain, but is not limited to, the following:

* Counseling and guidance * Assessment services * Independent living services * Assistive technology services * Training and education Vocational and Educational Services for Individuals with Disabilities within the New York State Education Department has accountability criteria for meeting the needs of individuals diagnosed with disabilities from early infancy through old age, plus oversight of special education services for pupils with disabilities aged 3–21. Each year VESID offers thousands

special education services for pupils with disabilities aged 3–21. Each year VESID offers thousands of New Yorkers who have a disability a chance to be independent through learning, preparation, and employment. In addition, VESID delivers vocational rehabilitation services to eligible individuals to prepare them for appropriate jobs. These jobs might be in the competitive work force, in private businesses, in supported employment on employer sites, or in sheltered shops. Moreover, VESID aids

businesses, in supported employment on employer sites, or in sheltered shops. Moreover, VESID aids individuals with disabilities who are having trouble keeping their jobs. Offices of Vocational Services throughout the country provide similar services and oversight. Offices of Vocational Rehabilitation, or OVR, delivers vocational rehabilitation services to support persons with disabilities to prepare for, obtain, or maintain employment. The office also offers services to qualified persons

prepare for, obtain, or maintain employment. The office also offers services to qualified persons diagnosed with disabilities, both directly and through a system of appropriate vendors. Services are provided on a personalized base. The therapist, through face-to-face interviews, helps clienteles in choosing their choice of occupational goals, services, and service providers. An Individualized Plan for Employment (IPE) is established, charting a vocational objective, services, providers, and

Plan for Employment (IPE) is established, charting a vocational objective, services, providers, and responsibilities. Some services are subject to a Financial Needs Test (FNT) and could involve fiscal contribution by the client. Counseling and guidance, diagnostic services, assessments, information and referral, job development and placement, and personal services such as readers or sign language interpreters are provided at no cost to the individual. Also, by law, OVR clienteles awarded Social

interpreters are provided at no cost to the individual. Also, by law, OVR clienteles awarded Social Security benefits for their disability (SSI, SSDI) are relieved from OVR’s Financial Needs Test.

Types of Vocational Rehabilitation Services The OVR runs a variety of services to qualified applicants. Certain services can aid in overcoming or lessening the disability; others can directly support and prepare for a vocation. The services will be organized to meet distinct needs. The OVR services include:
Diagnostic services: Medical, psychological, and checkups and assessments used to improve understanding of the disability and needs for specific types of services.

Vocational evaluation: Ability, interest, overall ability, academic exams, work tolerance, and “hands-on” job experience used to understand vocational potential.
Counseling: Occupational therapy will help to better understand potential, to rely on abilities, to set accurate vocational goals, to modify them once needed, to advance fruitful work ways, and to initiate a fulfilling career. Counseling is obtainable throughout rehabilitation program.

Training: Education to prepare for a job including, but not limited to, basic academic, vocational/technical, college, on-the-job training, independent living skills, and personal and work adjustment training.
Restoration services: Medical services and gear such as physical and occupational therapy, wheelchairs, and automobile hand controls can be provided to achieve employment.

Placement assistance: Counseling, job-seeking programs, job clubs, and job development used to upturn your skill to acquire a job.

Assistive technology: Assistive technology includes a wide range of devices and services that can empower individuals with disabilities to make the most of employment, independence, and integration into society. The office can help person with a disability in successfully choosing and obtaining appropriate assistive technology. They can arrange for an adviser to assess the situation and to make appropriate recommendations. The office also functions and maintains Center for Assistive and

make appropriate recommendations. The office also functions and maintains Center for Assistive and Rehabilitation Technology (CART) at the Hiram G. Andrews Center. There is no charge for evaluation and vocational counseling services through OVR.

Support services: Additional services are provided for eligible persons if they are essential to start and uphold occupation. Such services may include:
* Room, board, and transportation costs during an evaluation or while completing a rehabilitation program
* Occupational tools, licenses, or equipment * Home modifications, adaptive or special household equipment; van or car modifications, including special driving devices or lifting devices

* Personal care assistance * Job site modifications, independent living training * Text telephone (TT), signaling devices, hearing aids, and interpreter services
* Specialized services such as rehabilitation teaching and orientation and mobility training for persons who are blind or visually impaired

See Also ▶Americans with Disabilities Act ▶Individualized Plan for Employment (IPE) ▶Vocational Evaluator ▶Vocational Training  Betsey A. Benson and Whitney T. Brooks Nisonger Center, UCEDD, The Ohio State University, Columbus, OH, USA  Synonyms Depressive disorders; Dysthymia; Major depressive disorder; Mood disorders  Short Description or Definition * Major depressive disorder * Dysthymia * Depressive disorders * Mood disorders  Categorization According to the DSM-IV-TR (American Psychiatric

disorders * Mood disorders  Categorization According to the DSM-IV-TR (American Psychiatric Association [APA] 2000), depressive disorders include major depressive disorder, dysthymic disorder, and depressive disorder not otherwise specified. Major depressive disorder includes the presence of a major depressive episode, with specifiers to indicate the severity and duration. Major depressive episodes involve symptoms that are present most of the day, nearly every day consisting of either

episodes involve symptoms that are present most of the day, nearly every day consisting of either depressed mood (can be irritability in children) or diminished interest or pleasure in activities, and at least four of the following: significant weight loss or weight gain, insomnia or hypersomnia, psychomotor agitation or retardation, fatigue or loss of energy, feelings of worthlessness or excessive or inappropriate guilt, diminished ability to think or concentrate or indecisiveness, or

excessive or inappropriate guilt, diminished ability to think or concentrate or indecisiveness, or recurrent thoughts of death, suicidal ideation without a plan, or a suicide attempt or specific plan for committing suicide. Dysthymic disorder includes the presence of depressed mood for most of the day, for more days than not, as indicated either by subjective account or observation by others, for at least 2 years (in children and adolescents, mood can be irritable, and duration must be at least

at least 2 years (in children and adolescents, mood can be irritable, and duration must be at least 1 year) and at least two of the following: poor appetite or overeating, insomnia or hypersomnia, low energy or fatigue, low self-esteem, poor concentration or difficulty making decisions, or feelings of hopelessness. Depressive disorder not otherwise specified includes disorders with depressive features that do not meet the criteria for major depressive disorder but present with subthreshold

features that do not meet the criteria for major depressive disorder but present with subthreshold symptoms that cause clinically significant impairment or distress.

In the ICD-10 (WHO 1992), depressive disorder is defined by the presence of at least one depressive episode with the same key characteristics as in the DSM-IV-TR, such as lowering of mood, decrease in activity, decrease in capacity for enjoyment, and difficulty in concentration. Somatic symptoms, such as marked tiredness, sleep, and appetite disturbance, are present, and ideas of guilt or worthlessness and suicidal thoughts are often present. Depressive disorders are also categorized by the

and suicidal thoughts are often present. Depressive disorders are also categorized by the severity and duration of symptoms, into mild, moderate, severe, recurrent, or with psychotic symptoms. The ICD-10 differs in the classification from DSM-IV-TR by its lack of a specific number of symptoms required to meet criteria. Dysthymia in the ICD-10 is defined similarly as in the DSM-IV-TR, with chronic depression of mood that is not sufficiently severe or prolonged to justify a diagnosis of severe,

depression of mood that is not sufficiently severe or prolonged to justify a diagnosis of severe, moderate, or mild recurrent depressive disorder. However, the criteria do not specify a period of 2 years but rather indicates that the symptoms must last at least several years. Other depressive disorders include any other disorders that are not of sufficient severity or duration to meet criteria for depressive disorder or dysthymia. (Note: Major depressive disorder, dysthymia, depressive disorder

depressive disorder or dysthymia. (Note: Major depressive disorder, dysthymia, depressive disorder not otherwise specified, and other depressive disorders will be referred to collectively as “depressive disorders” or “depression” throughout.)

Epidemiology The occurrence of depressive disorders in individuals with autism spectrum disorders is likely affected by the same complex genetic and environmental interactions seen in typically developing individuals (Ghaziuddin 2005). However, the impact of these factors is far less understood in ASD due to the lack of systematic epidemiological studies. Family studies suggest a genetic component to the presence of depressive disorders in ASD, with rates of major depression increased in

to the presence of depressive disorders in ASD, with rates of major depression increased in first-degree relatives of individuals with autism and parents of children with ASD exhibiting higher risk for depressive disorders than parents of children with other developmental disabilities (Ghaziuddin and Greden 1998; Lainhart 1999). Families of individuals with ASD who present with depression at clinical settings have a history of depression or suicide at a rate of 50–77% (Lainhart 1999). Stressful

settings have a history of depression or suicide at a rate of 50–77% (Lainhart 1999). Stressful life events, including bereavement, peer victimization, and loneliness, could also contribute to the development of depressive symptoms in individuals with ASD (Ghaziuddin et al. 1995; Ghaziuddin 2005). Despite the recognition that depressive disorders are relatively common in individuals with autism spectrum disorders, true prevalence rates are unknown because most studies have been conducted with

spectrum disorders, true prevalence rates are unknown because most studies have been conducted with psychiatric samples rather than population samples. However, these studies provide initial estimates of the rate of depressive disorders.

Reviews of published research on co-occurring depressive disorders in ASD have reported a wide range of prevalence estimates, from 4% to 58% (Lainhart 1999; Lainhart and Folstein 1994; Stewart et al. 2006). The varied rates of depressive disorders in the literature likely reflect the heterogeneity of the samples and different methods of assessing depressive disorders. For example, the estimates differ depending on whether psychiatric or community samples were used, which ASD subtype was

differ depending on whether psychiatric or community samples were used, which ASD subtype was included, the age of participants, and whether psychiatric interviews or questionnaire assessment methods were used. Many researchers posit a higher rate of depressive disorders in ASD than in the general population and suggest that the disorders may be underdiagnosed (e.g., Ghaziuddin 2005; Lainhart and Folstein 1994). In one of the first descriptions of children and adults with Asperger syndrome in a

Folstein 1994). In one of the first descriptions of children and adults with Asperger syndrome in a clinical setting, about one third of the adolescents (16 years and above) and young adults presented with clinical levels of depression (Wing 1981). Other reports describe depression as being the most common psychiatric disorder in Asperger syndrome, with 15% of adults referred to a psychiatric setting presenting with symptoms of depression (Tantum 1991). Despite the findings of several clinical

presenting with symptoms of depression (Tantum 1991). Despite the findings of several clinical studies and the recognition of the risk for developing depressive disorders in ASD, no population-based prevalence studies with adolescents and adults appear to have been completed.

There have been some promising studies examining the prevalence of depressive symptoms in children with ASD, with larger, more representative samples. For example, a prevalence study of mood and anxiety symptoms among 9- to 13-year-old children with Asperger syndrome and high-functioning autism included a community standardization sample of 1,751 typically developing children (Kim et al. 2000). On a questionnaire of depression symptoms, 16.9% of the ASD sample scored at least two standard

On a questionnaire of depression symptoms, 16.9% of the ASD sample scored at least two standard deviations above the population mean, suggesting a significantly higher rate of depressive symptoms than in the community sample (Kim et al. 2000). An Australian study examined emotional and behavioral problems in 4- to 18-year-old children and adolescents diagnosed with ASD and with youngsters diagnosed with intellectual disability (learning disability) and no diagnosis of ASD (Brereton et al.

with intellectual disability (learning disability) and no diagnosis of ASD (Brereton et al. 2006). The ASD group scored significantly higher on a measure of depression than the non-ASD group. Age and IQ in the ASD group also affected depression scores. Older children (13 years or older) scored significantly higher on the depression measure than the youngest age group (less than 6 years old), and those with higher IQs scored higher than individuals with intellectual disability (learning

and those with higher IQs scored higher than individuals with intellectual disability (learning disability). Standardized interview methods of assessment have been used infrequently in research on depression in ASD. Only one study was found to examine the prevalence rates of psychiatric disorders in a community-derived sample using a standardized interview measure (Simonoff et al. 2008). In this sample of children aged 10–14 years, a surprisingly low rate of depressive disorders (1.4%) was

sample of children aged 10–14 years, a surprisingly low rate of depressive disorders (1.4%) was found. When lifetime occurrence of depressive symptoms and a wider age range was included, a higher rate of depressive disorders was found. In a pilot study for the development of an ASD-specific psychiatric comorbidity interview conducted with 5-to 17-year-olds, 10% of a community sample with higher-functioning ASD met criteria for at least one major depressive disorder in their lifetime, and 25%

ASD met criteria for at least one major depressive disorder in their lifetime, and 25% met criteria for subsyndromal symptoms of depressive disorders (Leyfer et al. 2006). The prevalence of depressive disorders in the general population varies by age with more adolescents and adults presenting with depression than children (World Health Organization 2002). Research on depressive disorders in ASD suggests a similar pattern, with more adolescents and adults with ASD presenting with depression

suggests a similar pattern, with more adolescents and adults with ASD presenting with depression than children (e.g., Brereton et al. 2006; Martin et al. 2000; Simonoff et al. 2008). It is currently unknown if more women with ASD present with depression than men, as is the case in the general population (Ghaziuddin 2005).

Natural History, Prognostic Factors, and Outcomes The presence of depressive symptoms in individuals with autism spectrum disorders was noted in the earliest descriptions of the disorders (Asperger 1944; Kanner 1943; Wing 1981). However, due to the lack of systematic population studies, the course of depressive disorders is not well understood. Numerous publications have noted that the development of depressive disorders in adolescents and adults with Asperger syndrome and high-functioning

of depressive disorders in adolescents and adults with Asperger syndrome and high-functioning autism in particular seems to be related to a developing awareness of “differentness” from their peers and unsuccessful attempts to establish friendships and romantic relationships (e.g., Ghaziuddin 2005; Howlin 1997; Wing 1981). The presence of depressive symptoms in children with Asperger syndrome and high-functioning autism has been found to be associated with higher rates of aggressive and

and high-functioning autism has been found to be associated with higher rates of aggressive and oppositional behavior, along with poorer relationships with teachers, peers, and family members when compared to children with ASD without depressive symptoms (Kim et al. 2000). In general, the outcomes for adults with autism spectrum disorders, with and without intellectual disability (learning disability), have not been promising, with decreased opportunities for employment, independent living, and

have not been promising, with decreased opportunities for employment, independent living, and access to community services (Howlin 2005). There is little information on the long-term outcome of persons with ASD and depressive disorders. However, clinicians report that the presence of co-occurring depressive disorders can result in further impairment and disruption in functioning, such as increased morbidity and mortality, and a higher potential for drug interactions due to multiple

as increased morbidity and mortality, and a higher potential for drug interactions due to multiple pharmacotherapy treatment (Ghaziuddin 2005). Depressive illness can become chronic in some individuals, and a family history of mood disorders seems to be associated with a poorer treatment outcome (Ghaziuddin 2005).

Clinical Expression and Pathophysiology The presentation of depressive symptoms in ASD shares many of the features seen in the general population, such as sadness and lack of interest in formerly pleasurable activities, but individuals with ASD may also present with unique features, due to their restricted range of emotional expression and difficulty in communication. While sad mood and loss of pleasure in activities are defining characteristics of depressive disorders, individuals with ASD

pleasure in activities are defining characteristics of depressive disorders, individuals with ASD are often referred to clinical settings because of changes observed by others, such as facial expressions of sadness or misery, or behavioral expressions, such as increased frequency of crying, irritability, or problem behavior (Stewart et al. 2006). Particular features that must be assessed carefully in individuals with ASD include an increase in social withdrawal, changes in the character of

in individuals with ASD include an increase in social withdrawal, changes in the character of stereotypic and repetitive behavior, and restricted interests, irritability, and regression of skills (Ghaziuddin 2005). Other factors that are likely to affect the presentation of depressive disorders in ASD include age, gender, cognitive and verbal ability, other psychiatric disorders, and other medical disorders. Younger children may be more likely to present with irritability than with sad or

disorders. Younger children may be more likely to present with irritability than with sad or depressed mood, and this is recognized in the DSM-IV-TR criteria, which allows for substitution of irritability for depressed mood in children (APA 2000). Research suggests an increase in depressive symptoms with age (e.g., Brereton et al. 2006). The risk of depression and other psychiatric disorders may be higher in individuals with Asperger syndrome and higher-functioning individuals with autism

may be higher in individuals with Asperger syndrome and higher-functioning individuals with autism because their relatively good cognitive and language skills may lead others to overestimate their abilities and put more pressure on them to “fit in” with peers, while overlooking the severe difficulty they have in understanding social interaction. However, there is not enough evidence at this time to make any conclusions about differential risks of developing depression in these groups (Howlin

to make any conclusions about differential risks of developing depression in these groups (Howlin 2005). Individuals with Asperger syndrome and higher-functioning autism may present with depressive symptoms differently than individuals with autistic disorder. They may be able to verbally describe feelings of sadness and loneliness, while individuals with more cognitive impairments may not be able to express themselves verbally and may present with more behavioral signs, such as irritability,

to express themselves verbally and may present with more behavioral signs, such as irritability, aggression, and changes in sleep and appetite. However, it is important to recognize that individuals with higher-functioning presentations of ASD and intact language abilities may not be able to accurately describe their emotions and may present with atypical signs and symptoms of depressive disorders, such as irritability or bizarre ideation (Howlin 2005). The presence of other psychiatric

such as irritability or bizarre ideation (Howlin 2005). The presence of other psychiatric disorders can also affect the presentation of depressive symptoms. The co-occurrence of mood and anxiety disorders is common in the general population, and research suggests that these disorders often co-occur in people with ASD (e.g., Lainhart 1999). The presence of symptoms associated with anxiety, such as increased stereotypic behaviors, may make it more difficult to assess depressive disorders in

as increased stereotypic behaviors, may make it more difficult to assess depressive disorders in individuals with ASD.

Evaluation and Differential Diagnosis The classification of psychiatric disorders in ASD has involved considerable controversy. Many early researchers adopted a hierarchical approach to diagnosis and argued that psychiatric disorders could not occur in individuals with intellectual disability (learning disability) or autism spectrum disorders. An alternative diagnostic approach to the hierarchical approach classifies all symptom constellations that meet criteria for a particular disorder and

approach classifies all symptom constellations that meet criteria for a particular disorder and allows for identification of multiple disorders (Simonoff et al. 2008). Despite the controversy in the literature, many now agree that the full spectrum of psychiatric disorders can co-occur in ASDs (Ghaziuddin 2005; Matson and Nebel-Schwalm 2007; Simonoff et al. 2008). Despite the recognition that depressive disorders can and do occur in ASD, diagnosing them in individuals with autism spectrum

depressive disorders can and do occur in ASD, diagnosing them in individuals with autism spectrum disorders can be particularly difficult due to a variety of factors, including an overlap between symptoms of depressive disorders and features of ASD, such as poor eye contact, restricted affect, and lack of voice inflection. For example, it may be difficult to determine whether the social withdrawal observed in an individual with autism is part of the core social deficits of autism spectrum

observed in an individual with autism is part of the core social deficits of autism spectrum disorders or is symptomatic of a co-occurring mood disturbance.

An important factor in making an accurate diagnosis of depressive disorders in ASD is having reliable information from multiple sources. If the individual with ASD is able to provide information about symptoms, it is important to assess these carefully. However, given the difficulties that individuals with ASD have in expressing and understanding emotions, it is also important to obtain information from caregivers, teachers, and family members about typical patterns of behavior. Reports by

from caregivers, teachers, and family members about typical patterns of behavior. Reports by others may also be helpful to interpret self-report of individuals with ASD. The clinician needs to obtain a detailed picture of the individual’s baseline levels of social activity, interests, restricted and repetitive behavior, maladaptive behavior, and adaptive skills, in order to detect distinct differences in these areas that may indicate the onset of mood disturbance. Information obtained from

in these areas that may indicate the onset of mood disturbance. Information obtained from parental report concerning developmental and social history, including the presence of significant life events, and the results from prior assessments, such as medical and psychological evaluations, intelligence, and adaptive behavior testing, can complete the diagnostic picture. A detailed physical examination is recommended to rule out other possible causes of depressive symptoms such as thyroid

examination is recommended to rule out other possible causes of depressive symptoms such as thyroid disorders (Ghaziuddin 2005).

Intellectual disability (learning disability) commonly co-occurs in ASD, with estimates of 30–70% of individuals with ASD functioning in the ID (LD) range (Fombonne 2005). The presence of ID (LD) in this population has important implications for how depression is assessed in this heterogeneous group. The diagnostic manual for intellectual disability (DM-ID) proposed adaptations to the DSM diagnostic criteria for persons with intellectual disabilities based on clinical consensus (Fletcher et

criteria for persons with intellectual disabilities based on clinical consensus (Fletcher et al. 2007). The DM-ID includes irritable mood as an acceptable substitute for depressed mood for people with ID which the DSM-IV-TR includes in the criteria for children (APA 2000). The DM-ID reduces the number of symptoms by one for diagnosing major depressive disorder, requiring four symptoms instead of five if the individual has limited expressive language skills. The other important adaptation is

of five if the individual has limited expressive language skills. The other important adaptation is that the DM-ID allows observer report for many symptoms (Charlot et al. 2007). This practice is compatible with clinical reports concerning individuals with ASD in which most cases of depression are brought to clinical attention by observations from caregivers rather than by self-report of the individual. While the alternative diagnostic criteria put forth in the DM-ID represent an important step

While the alternative diagnostic criteria put forth in the DM-ID represent an important step in the understanding of co-occurring psychiatric disorders in individuals with all types of developmental disabilities, there remains a lack of ASD-specific psychopathology assessment methods. Many studies on depression in ASD have relied on scales or structured interviews designed for the general population or for individuals with intellectual disability. Consequently, it is difficult to determine if

or for individuals with intellectual disability. Consequently, it is difficult to determine if these measures are sensitive to the characteristic features of ASD.

A semistructured psychiatric interview was developed to assess psychiatric disorders in children and adolescents with ASD (Leyfer et al. 2006). The Autism Comorbidity Interview – Present and Lifetime Version (ACI-PL) was modified from the Kiddie Schedule for Affective Disorders and Schizophrenia (KSADS, Chambers et al. 1985). This measure aims to distinguish the core symptoms of ASD from symptoms of comorbid psychiatric disorders. It demonstrated good reliability and validity, although the

of comorbid psychiatric disorders. It demonstrated good reliability and validity, although the validation sample was limited to individuals with higher-functioning ASD. The further development of ASD-specific screening measures and structured diagnostic interviews is important to improve the accurate identification of depressive disorders in ASD and to gain access to specific, effective treatment.

Treatment The treatment of depressive disorders in individuals with ASDs is largely pharmacological in nature, with antidepressant medication being prescribed most often and selective serotonin reuptake inhibitors (SSRIs), such as fluoxetine, sertraline, and fluvoxamine, showing the greatest success in symptom reduction (Lainhart 1999; Stewart et al. 2006). It is difficult to determine if psychopharmacological treatments are being used in this population specifically to treat depressive

psychopharmacological treatments are being used in this population specifically to treat depressive disorders because a large percentage (30.5%) of individuals with ASD take one or more psychotropic medications (Aman et al. 1995). Antidepressants may be prescribed for repetitive or compulsive behavior as well as for depressive symptoms. A naturalistic study, which examined psychotropic drug use among a sample of 109 individuals with high-functioning ASD, reported that about a third of the

use among a sample of 109 individuals with high-functioning ASD, reported that about a third of the participants were prescribed an antidepressant with about one fourth taking an SSRI (Martin et al. 2000). Depression was identified as the reason for taking psychotropic medication in about 30% of participants. The response to antidepressants by patients with ASD is reported to be similar to the general population (Ghaziuddin 2005). Side effects, if they are problematic, tend to be related to

general population (Ghaziuddin 2005). Side effects, if they are problematic, tend to be related to other medical issues such as seizures. There is increasing recognition that cognitive behavior therapy may be an effective treatment for psychiatric disorders in individuals with Asperger syndrome (Anderson and Morris 2006; Attwood 2003). Cognitive behavior therapy for depression has been used with individuals with Asperger syndrome with resulting improvement (Hare 1997). Depending on the

with individuals with Asperger syndrome with resulting improvement (Hare 1997). Depending on the individual’s level of functioning and communication abilities, CBT may be an appropriate treatment choice. Further study is needed to determine the effectiveness of CBT with individuals with ASD and to identify the active components of the treatment. Social skills training, environmental modifications, and behavioral interventions may have a role in addressing depressive symptoms in individuals with

and behavioral interventions may have a role in addressing depressive symptoms in individuals with ASD. Psychosocial interventions are often used in conjunction with medications to treat depressive disorders.

See Also ▶Affective Disorders (Includes Mood and Anxiety Disorders) ▶Antidepressant Medications ▶Anxiety Disorders ▶Cognitive Behavioral Therapy (CBT) ▶Mood Disorders ▶Serotonin Reuptake Inhibitors (SRIs)  Jessica L. Roesser Department of Pediatrics (SMD), University of Rochester, School of Medicine and Dentistry, Rochester, NY, USA

Definition Dermatoglyphics refers to the study of fingerprints and handprints. Dermatoglyphic patterns are the unique ridges and whorls of the skin of the fingertips and palms. Each individual person (even genetically identical twins) has a slightly different pattern of ridges and whorls on the fingers, especially the tips and palms. There can be unique patterns of the lines that cross the palms and fingers as well. The creases of the palms may be altered in specific genetic syndromes. The

and fingers as well. The creases of the palms may be altered in specific genetic syndromes. The dermatoglyphic pattern of the fingerprint is determined prenatally. At this point, the literature on dermatoglyphic patterns in children with ASD is conflicting. The evidence does not indicate that there are differences in the ridges/whorls or palm prints of children with autism spectrum disorders, although there may be differences related to associated or underlying genetic disorders.

See Also ▶Down Syndrome ▶Genetics ▶Physical and Neurological Examination  John T. Danial1, Christie Enjey Lin2 and Jeffrey J. Wood3 1Psychological Studies in Education, University of California, Los Angeles, Los Angeles, CA, USA
2Departments of Education and Psychiatry, Child and Adolescent Psychiatry, University of California, Los Angeles, CA, USA

3Departments of Psychiatry and Education, UCLA/Geffen School of Medicine, UCLA Center for Autism Research and Treatment, University of California, Los Angeles, CA, USA

Definition Systematic desensitization refers to the therapeutic technique of gradually exposing an individual to increasingly difficult anxiety-producing conditions in an effort to help an individual reduce anxious responses in those situations by adopting more adaptive ways of coping. The closely related process of counterconditioning consists of coupling opposing, positive responses (e.g., relaxation) to situations known to cause fear or anxiety. By substituting a new, adaptive response to

to situations known to cause fear or anxiety. By substituting a new, adaptive response to fearful settings, the individual learns to elicit a more appropriate reaction in fearful situations. The development of a hierarchy of fearful conditions (i.e., consists of identifying a range of situations from least to most anxiety provoking) plays a key role in this intervention by serving as a framework for gradual exposure. Anxiety-related situations are introduced in a step-by-step process beginning

for gradual exposure. Anxiety-related situations are introduced in a step-by-step process beginning with the least challenging and progressing to the more difficult. This technique has been used effectively with children and adults with autism.

Historical Background Systematic desensitization originates from classical conditioning theory. In 1920, John B. Watson demonstrated that fearful responses could be conditioned. Watson conditioned a fear of rats in an infant, referred to as “Little Albert,” by pairing the presence of a white rat with a sudden loud noise (Watson and Rayner 1920). Eventually the presence of the rat by itself elicited a fear response that generalized to all furry objects. Watson postulated that emotional

elicited a fear response that generalized to all furry objects. Watson postulated that emotional responses could be learned and modified to generalize to a broader category of stimuli. The seminal work by Watson laid forth evidence for the development of phobias. In response, Mary Carver Jones conducted instrumental research examining the mechanisms in which fearful responses could be reduced and generalization of these new responses achieved (Jones 1924). She treated a young boy, “Peter,” whom

generalization of these new responses achieved (Jones 1924). She treated a young boy, “Peter,” whom she selected partially because of characteristics (i.e., fear of white rats and other furry animals and objects) he shared with “Little Albert.” In the experiment, Peter was gradually presented with increasingly difficult fearful situations while he was simultaneously engaged in a pleasant activity. Initially the rabbit was presented a considerable distance away, and over a period of multiple

Initially the rabbit was presented a considerable distance away, and over a period of multiple sessions, it was gradually moved closer to Peter. During each of these sessions, Peter received his favorite food that was presented to him by a friendly peer or adult in the presence of the rabbit (Lang 1966). Peter initially demonstrated fearful responses to the rabbit but gradually exhibited that he was comfortable by holding the rabbit on his lap and he ultimately showed affection towards it.

he was comfortable by holding the rabbit on his lap and he ultimately showed affection towards it. Through the process of gradual exposure, coupled with positive reinforcement (both through tangible rewards and social praise), Jones effectively demonstrated mechanisms through which fear could be reduced. Building on the findings of Mary Carver Jones, Joseph Wolpe developed and operationalized the method of systematic desensitization to treat clients with anxiety and phobias, especially those

method of systematic desensitization to treat clients with anxiety and phobias, especially those connected to situations in which no real danger was present (Wolpe 1958). He based his method on the principle of reciprocal inhibition, which emphasized that opposite responses to anxiety, such as relaxation, could be utilized to diminish anxiety. Though Wolpe acknowledged that other responses also compete with anxiety (Wolpe 1990a), he incorporated relaxation as the “reciprocally inhibiting”

compete with anxiety (Wolpe 1990a), he incorporated relaxation as the “reciprocally inhibiting” response in his treatment through gradual exposure. Wolpe’s seminal research on systematic desensitization provided a theoretical explanation for the success of gradual approaches through which the therapist determines the degree to which a patient is exposed to anxiety-provoking stimuli (Wolpe 1961). He also developed the method of imagery construction within systematic desensitization (having the

He also developed the method of imagery construction within systematic desensitization (having the client imagine fearful situations) to gradually expose clients to anxiety-provoking scenarios without confronting them directly to begin with. Systematic desensitization was reportedly successful for treating anxiety of nonpersonal stimuli (enclosed spaces, harmless animals, etc.) as well as interpersonal stimuli (fears of specific people or fear of being criticized). Also, Wolpe’s method treated

stimuli (fears of specific people or fear of being criticized). Also, Wolpe’s method treated fears that could not be brought into a therapist’s office such as complex social situations in a community setting (Lang 1966). Overall, the method adequately treated abstract fears and anxieties, which separated systematic desensitization from other treatments available at the time. While Wolpe originally incorporated imagined exposures during treatment, many clinicians now use in vivo exposures when

incorporated imagined exposures during treatment, many clinicians now use in vivo exposures when implementing systematic desensitization. These in vivo exposures involve direct exposure to the actual fear-inducing stimuli. Both imagined exposure and in vivo exposure produce diminished anxiety levels in patients. With children, in vivo exposure tends to be used more.

Rationale or Underlying Theory Wolpe hypothesized that the underlying process at work during systematic desensitization is reciprocal inhibition. If a client can be taught to elicit a response oppositional to anxiety (e.g., relaxation) while in the presence of anxiety-evoking stimuli, then the anxiety response weakens eventually leading to diminished or no anxiety (Wolpe 1958). Pairing such a response with systematic presentations of increasingly anxiety-provoking stimuli, fear responses

a response with systematic presentations of increasingly anxiety-provoking stimuli, fear responses gradually diminish even in response to the most fearful situations. The theory of habituation provides another explanation for the changes that occur during systematic desensitization (Antony and Stein 2008; Watts 1971). The longer and more often a client is exposed to anxiety-producing stimulus, the less effect that stimulus is presumed to have. When a person is exposed to anxiety-producing

the less effect that stimulus is presumed to have. When a person is exposed to anxiety-producing stimuli without negative consequences (e.g., petting a dog without getting bitten), negative thoughts are challenged and new, more adaptive information is encoded (Antony and Stein 2008). As a client spends more time exposed to these situations free from negative consequences, the person becomes “habituated” to the stimuli and previously distressing situations no longer cause unmanageable levels of

to the stimuli and previously distressing situations no longer cause unmanageable levels of anxiety. Modern theorists also incorporate cognitive approaches to explain the success of systematic desensitization in treating anxiety symptoms. A retrieval competition theory posits that when clients are exposed to feared stimuli with no negative consequences, they begin to form different mental representations of these situations. Positive aspects of the exposure such as free choice, relative safety,

of these situations. Positive aspects of the exposure such as free choice, relative safety, and perceived self-efficacy all contribute to the formation of new mental representations (Brewin 2006). As exposures are repeatedly completed, these more positive representations are primed for retrieval and activated more quickly than the original negative representations.

Goals and Objectives The overall goal of systematic desensitization is to reduce anxiety in feared situations. The method aims at addressing fears and anxieties through gradual exposures. Systematic desensitization can be used to treat a range of anxiety symptoms, particularly phobias, from the specific (e.g., fear of snakes) to the abstract (e.g., fear of embarrassment). In this way, phobias such as fear of crowds or fear of public speaking can be remediated in behavioral therapy. While some

as fear of crowds or fear of public speaking can be remediated in behavioral therapy. While some models of the method utilize only imagined exposure and others incorporate exposure in naturalistic contexts, the objective is to gradually weaken anxious responses to anxiety-evoking stimuli and to minimize the probability of fears returning after being successfully treated (Brewin 2006). Modern research suggests that the “return of fear” phenomenon is most likely to occur when exposure therapy is

suggests that the “return of fear” phenomenon is most likely to occur when exposure therapy is conducted only in limited contexts (e.g., clinics), rather than also in the naturalistic settings where fear is experienced in everyday life (Mineka et al. 1999; Mystkowski et al. 2003).

Treatment Participants Systematic desensitization is appropriate to treat phobias or anxiety symptoms in both children and adults. Given that phobias and anxiety present themselves in a range of populations, the process has been effective in treating a variety of conditions (Brooks et al. 2007; Davis et al. 2011; Frank et al. 1988; Morrow 1986). Research indicates particular effectiveness in treating specific phobias (Gelder et al. 1967), such as with snakes (Lang and Lazovik 1963) or

in treating specific phobias (Gelder et al. 1967), such as with snakes (Lang and Lazovik 1963) or claustrophobia (Wolpe 1961). Systematic desensitization has also proven effective to treat fears and anxieties in persons with cognitive limitations (Erfanian and Miltenberger 1990) and autism spectrum disorders (ASD) (Jackson and King 1982; Koegel et al. 2004; Luiselli 1978; Luscre and Center 1996; Wood et al. 2009).

Systematic Desensitization and Autism Spectrum Disorders Individuals with ASD often experience symptoms of fear and anxiety (Gillot et al. 2001; White et al. 2009). Many systematic desensitization interventions among children with autism involve in vivo exposures within the actual setting (Koegel et al. 2004; Luiselli 1978; Luscre and Center 1996; Wood et al. 2009). Luiselli (1978) used in vivo systematic desensitization to successfully treat a child with autism who feared riding the school

systematic desensitization to successfully treat a child with autism who feared riding the school bus. Additionally, systematic desensitization significantly reduced fear of dental visits in children with autism (Luscre and Center 1996), and in another study, it was used to successfully eliminate fearful behaviors to common auditory stimuli (e.g., sounds from a vacuum, flushing toilets) in three children with autism (Koegel et al. 2004). Wood et al. (2009) incorporated systematic

in three children with autism (Koegel et al. 2004). Wood et al. (2009) incorporated systematic desensitization as a component of their cognitive behavioral therapy. Children with autism moved through individually designed fear hierarchies in which they were presented with in vivo exposures and received a variety of reinforcers for their participation. Immediately before and immediately following each exposure, a therapist guided the client through conversations aimed at restructuring negative

each exposure, a therapist guided the client through conversations aimed at restructuring negative thoughts with more adaptive cognition. Case studies of this treatment are given in Sze and Wood (2007, 2008), with anxiety targets ranging from intrusive thoughts (worries and obsessions) to separation anxiety, social avoidance at school, and compulsive behaviors. These studies suggest that systematic desensitization is effective in treating anxious responses in children with ASD.

Treatment Procedures Joseph Wolpe’s original treatment paradigm remains at the foundation of systematic desensitization while some elements have been modified. For example, current systematic desensitization procedures now employ more in vivo exposure rather than imagined exposure when possible. In fact, Wolpe himself utilized in vivo exposures when imagined exposure did not effectively treat a patient’s symptoms (Wolpe 1990a). Similarly, though relaxation is used as a means of reciprocal

a patient’s symptoms (Wolpe 1990a). Similarly, though relaxation is used as a means of reciprocal inhibition (Graziano and Kean 1968), other methods have been used as well such as positive reinforcement (Koegel et al. 2004; Luiselli 1978; Wood et al. 2009) and laughter (Jackson and King 1982). All systematic desensitization treatments continue to function on the principles of reciprocal inhibition and/or habituation. Before implementing an intervention using systematic desensitization, a

and/or habituation. Before implementing an intervention using systematic desensitization, a hierarchy of fears is established. This hierarchy refers to a list of various situations ordered from mildly to severely anxiety provoking (e.g., Wood and McLeod 2008). For example, a mild anxiety-inducing situation in a patient with a fear of snakes would be imagining a snake lying on the ground, while a severe anxiety-provoking situation would be holding a small, defanged, nonpoisonous snake. The

a severe anxiety-provoking situation would be holding a small, defanged, nonpoisonous snake. The hierarchy delineates the full range of conditions that produce fear. The items on the hierarchy can be conceptualized as steps or levels that range from a continuum from least to most anxiety provoking. It is developed before implementing treatment because it serves as a guideline for treatment goals (Lang 1966). Treatment proceeds in a stepwise progression beginning with mild anxiety-producing

(Lang 1966). Treatment proceeds in a stepwise progression beginning with mild anxiety-producing situations and gradually addresses more severe anxiety-producing scenarios on the hierarchy. The patient should exhibit and report diminished levels of anxiety before moving to the next step in the hierarchy. Employing a hierarchy during treatment has shown to increase the effects of systematic desensitization (Morrow 1986) and has been a constant component of systematic desensitization since Wolpe

(Morrow 1986) and has been a constant component of systematic desensitization since Wolpe first described the treatment. Incorporating relaxation into systematic desensitization treatment produces substantial effects (Wolpe 1958). The presence of a relaxation response inhibits anxiety or fear arousal because it is inherently antagonistic to both (Lomont and Edwards 1966). However, some research indicates that relaxation training is an unnecessary component to treatment (Agras et al. 1971).

indicates that relaxation training is an unnecessary component to treatment (Agras et al. 1971). While the degree of focus on relaxation may vary, many systematic desensitization treatments continue to include it as a component. Given that it requires intensive focus, relaxation training in children may be challenging (King et al. 1990), especially in children with mental retardation or low-functioning autism (Graziano and Kean 1968). To circumvent these challenges, immediate positive

low-functioning autism (Graziano and Kean 1968). To circumvent these challenges, immediate positive reinforcement (praise, edibles, toys, etc.) may substitute as an adequate means of attaining reciprocal inhibition and has been successful in treating anxiety in children with ASD (e.g., Wood et al. 2009). This type of treatment paradigm often occurs when employing in vivo exposures rather than imagined exposures. Luiselli (1978) used verbal praise and edible treats for each successive step a

imagined exposures. Luiselli (1978) used verbal praise and edible treats for each successive step a child completed in riding the school bus. In a study of hypersensitivity to auditory stimuli in children with autism (Koegel et al. 2004), children’s favorite snacks and verbal praise were used to reinforce the children during in vivo exposures. Similarly, Luscre and Center (1996) employed individualized rewards (i.e., music, Play-Doh, fruit, etc.) during and after exposures. Jackson and King

rewards (i.e., music, Play-Doh, fruit, etc.) during and after exposures. Jackson and King (1982) found that laughter could be used as an effective means of inhibiting anxiety in a child with autism suffering from a phobia of the sound from flushing toilets. These studies indicate that the effectiveness of systematic desensitization in children with autism may be enhanced when positive reinforcement or pleasant experiences are coupled with anxiety-provoking situations.

Efficacy Information The efficacy of systematic desensitization is well documented (Chambless et al. 1998; Choy et al. 2007; Wood et al. 2009). Since the treatment requires individualization to the patient, there are numerous single-case studies published (e.g., MacDonald 1975; Sze and Wood 2007, 2008). However, studies have also emphasized the effectiveness of systematic desensitization in larger sample sizes (e.g., Frank et al. 1988; Wood et al. 2009). The degree of efficacy varies and is

sample sizes (e.g., Frank et al. 1988; Wood et al. 2009). The degree of efficacy varies and is associated with the type of phobia, the severity of symptoms, the length of intervention, as well as individual attributes (e.g., treatment motivation) that is evidenced across typically developing populations (Wolpe 1990b) and children with ASD (Koegel et al. 2004; Sze and Wood 2007, 2008). Despite these variations, it seems that systematic desensitization is generally an effective treatment method

variations, it seems that systematic desensitization is generally an effective treatment method in treating anxious responses in ASD.

Outcome Measurement Abstract concepts such as “fear” and “anxiety” can be difficult to measure. As a result, outcome measurement varies across studies. One common method is to measure outcome by the number of steps completed in a fear hierarchy. Many single-case methodological studies utilize this approach as a means of determining the success of treatment in ASD (Koegel et al. 2004; Luscre and Center 1996). Additionally, the occurrence of anxious behavioral responses (e.g., crying, running

Center 1996). Additionally, the occurrence of anxious behavioral responses (e.g., crying, running away) has been measured using frequency counts or calculated as percentages of occurrence within specific timed intervals using direct observation or review of videotaped sessions (Koegel et al. 2004). Other measures include parent or patient report of anxiety symptoms (Kendall 1994; Wood et al. 2009). These self-report measures are subjective ratings (King et al. 1990) and are often used in

2009). These self-report measures are subjective ratings (King et al. 1990) and are often used in conjunction with other measures. In order to limit subjectivity, reports may be recorded using standardized anxiety scales such as subjective units of distress scale, which is a 0–100-point scale usually administered with adults to assess their subjective anxiety levels (Choy et al. 2007). When children are the subjects of treatment, measures of parent report are often obtained. Since changes in

are the subjects of treatment, measures of parent report are often obtained. Since changes in physical (somatic) responses such as increased respiration, cardiac rate, blood pressure, or galvanic skin response (GSR) serve as indicators of fear or anxiety, physiological measures may also be recorded as a means of indicating anxiety (Fisher et al. 2009). All of these outcome measurements are intended to determine the remittance of anxiety behaviors.

Qualifications of Treatment Providers Trained clinicians familiar with behavioral principles and the treatment population have implemented systematic desensitization. Understanding the rationale of the treatment likely increases the effectiveness of how the treatment is delivered. While therapists typically deliver the treatment, there are resources available for parents, teachers, and even patients themselves to learn to implement the treatment (Merrell 2001); however, the efficacy of such

themselves to learn to implement the treatment (Merrell 2001); however, the efficacy of such implementation has yet to be determined.

See Also ▶Cognitive Behavioral Therapy (CBT) ▶Phobia  Lawrence David Scahill Nursing and Child Psychiatry, Yale Child Study Center, Yale University School of Nursing, New Haven, CT, USA

Marcus Autism Center, Children’s Healthcare of Atlanta, Atlanta, GA, USA Department of Pediatrics, Emory University, Atlanta, GA, USA  Synonyms Norpramin; Pertofrane  Definition Desipramine is a tricyclic antidepressant. The term tricyclic refers to the three-ring structure of this class of antidepressant medications. These medications are not used as commonly as in the past as they have been largely replaced by the SSRIs. Desipramine has been used to treat depression and attention

been largely replaced by the SSRIs. Desipramine has been used to treat depression and attention deficit/hyperactivity disorder. Desipramine has highly selective norepinephrine reuptake inhibitor properties. The tricyclic antidepressants have several adverse effects in common including dry mouth, urinary retention, constipation, nausea, increased heart rate, dizziness, and, at higher doses, confusion. The tricyclic antidepressants also carry some risk of altering the electrical conduction in the

The tricyclic antidepressants also carry some risk of altering the electrical conduction in the heart. They are well known to be fatal on overdose due to their potential for causing cardiac arrhythmia. Because of their known toxicity at higher doses, treatment with tricyclic antidepressants requires blood-level monitoring and electrocardiogram monitoring as well. Finally, the tricyclic antidepressants are also vulnerable to drug-drug interaction. For example, some medications such as SSRIs or

are also vulnerable to drug-drug interaction. For example, some medications such as SSRIs or certain antibiotics may interfere with the breakdown of tricyclic antidepressant medications. The interference of metabolism of the tricyclic can cause a sharp increase in the blood levels of the tricyclic antidepressants and increase the vulnerability to toxic effects. The tricyclic medications have not been well studied in children or adults with autism.

See Also ▶Antidepressants  Dawn Wimpory School of Psychology, University of Wales Bangor, Gwynedd, UK  Synonyms DAISI  Description DAISI is a semistructured detailed developmental history interview designed to elucidate a child’s early sociability and communication. It is for concurrent or retrospective use with parents in clinical and research investigations, particularly those concerning autism. Wimpory, Williams, Nash, and Hobson (2000) provides details of DAISI with an appendix clarifying

Wimpory, Williams, Nash, and Hobson (2000) provides details of DAISI with an appendix clarifying its schedule and criteria for positive and negative responses, as scored from verbatim parental responses. The instrument focuses on developmental progression in the manifestation of social engagement in young preschool children with autism through a semistructured interview drawing out retrospective reports of social engagement from their parents. It employs a conversational style masking when the

reports of social engagement from their parents. It employs a conversational style masking when the interviewer moves from one to another of DAISI’s 19 items. The interview is designed to facilitate the development of a relationship between parent(s) and interviewer so that honest/accurate replies are more likely. To this end, DAISI involves sensitive probing with situational prompts. Questions are ordered to increase the likelihood that parents will be able to give an initial positive response

ordered to increase the likelihood that parents will be able to give an initial positive response before having to describe any negative responses on further detailed questioning. Rather than focusing merely on discrete communicative skills, there is a focus on the infant’s role in any interactive flow of preverbal engagement.

Wimpory et al. (2000) retrospectively used of DAISI with twenty 2–4-year-olds, prior to any autism diagnoses being made, found 15 key items differentiating the children who were subsequently diagnosed with autism from those with nonautistic developmental delay. Distinguishing items include engaging in dyadic social interaction (i.e., sociability in play with or without toys, socially directing feelings of anger and distress, frequency and intensity of eye contact, greeting parents, waving,

feelings of anger and distress, frequency and intensity of eye contact, greeting parents, waving, raising arms to be picked up, enjoying lap games, preverbal turn-taking, and using noises communicatively) as well as “triadic” social behavior, involving an object and another person (i.e., referential eye contact, pointing and following others’ points, offering and giving, and showing objects). The evidence from the study by Wimpory et al. (2000) indicated that infants with autism manifest a

The evidence from the study by Wimpory et al. (2000) indicated that infants with autism manifest a range of abnormalities suggestive of profound limitations in social engagement. These abnormalities were specific to the group with autism and were not simply an expression of general developmental delays because they were not characteristic of the infancies of children in the matched control group. Moreover, the abnormalities were both in the area of person-to-person nonverbal communication and

Moreover, the abnormalities were both in the area of person-to-person nonverbal communication and interpersonal contact and in triadic person-person-object interactions. In the former respect, it is notable that the abnormalities extended to socially directed expressions of anger and distress as well as signs of positive engagement. In the latter respect, there were a majority of infants without autism but no infants with autism who were reported to offer, give, show, or point to objects in

autism but no infants with autism who were reported to offer, give, show, or point to objects in relation to someone else. Finally, nearly all of the infants in the control group, but not a single child with autism, were said to have followed another person’s point. These findings are in keeping with autism theories that focus on impairments in primary intersubjectivity as well as recognize the importance of difficulties with secondary intersubjectivity (Hobson 1993; Newson 1984; Rogers and

importance of difficulties with secondary intersubjectivity (Hobson 1993; Newson 1984; Rogers and Pennington 1991; Wimpory et al. 2002). Concurrent use of the 15 key DAISI items that Wimpory et al. (2000) found to be significant also determined significant group differences between the infant siblings of autistic spectrum disordered (ASD) and typically developing children as detailed below (Stone et al. 2007). Stone et al. (2007) also found significant correlation between total scores from the

et al. 2007). Stone et al. (2007) also found significant correlation between total scores from the DAISI and a direct child measure of social-communicative functioning, The Screening Tool for Autism in 2-Year-Olds. Findings from Wimpory et al.’s use of DAISI, along those from other studies, determined 25 key items for Dereu et al. in screening for ASDs (Dereu et al. 2010). They successfully evaluated the Checklist for Early Signs of Developmental Disorders (CESDD) in a population of almost

the Checklist for Early Signs of Developmental Disorders (CESDD) in a population of almost seven thousand 3–39-month-olds. In summary, DAISI has been used for research retrospectively, with children who have autism or non-autistic developmental delay and concurrently with infant siblings of children with autistic spectrum disorders (ASD) and typical development. It has also been employed for diagnostic purposes in clinical/educational settings for two decades.

Historical Background DAISI’s development was influenced by child clinical training at Nottingham University’s Child Development Research Unit, and particularly by Professor Elizabeth Newson’s guidelines (1990). The originality of data published on DAISI, by Wimpory et al. (2000) lies in the fact that the interview was carried out before any diagnosis was made; so the parents did not have any a priori assumption when recounting their child’s social behavior. In this respect, the DAISI differs

priori assumption when recounting their child’s social behavior. In this respect, the DAISI differs from earlier questionnaires that were used with parents of affected children or adults, such as Dahlgren and Gillberg (1989) and Wing (1969). The latter were completed after the diagnosis of autism had been made and after years of experience of the person with autism, which might have influenced the results. Also, despite the fact that questionnaires are concise and easy to use, they are less

the results. Also, despite the fact that questionnaires are concise and easy to use, they are less sensitive than interviews and provide less accurate answers. These methodological limitations were a feature of almost all previous studies of this kind, even if the period recalled was not so distant. The DAISI interview is designed to give the impression of a natural conversation. There are opportunities for explanation, discussion, and provision of examples as part of the interchange. While

for explanation, discussion, and provision of examples as part of the interchange. While previously published diagnostic instruments for young children with autism, such as the Parent Interview for Autism (PIA; Stone and Hogan 1993) and the revised Autism Diagnostic Interview (ADI-R; Lord et al. 1993), record impairments in social relatedness, they do not focus exclusively on early social engagement in young preschool children. The DAISI interview was developed to overcome several of the

in young preschool children. The DAISI interview was developed to overcome several of the methodological issues that were a feature of previous research involving retrospective parental accounts. For example, it focuses on aspects of social engagement that are prominent in the behavior of typically developing infants and thus identify what may be abnormal in the case of autism. In addition, interviewing parents of young children with a specific focus on the first 2 years of life means that

parents of young children with a specific focus on the first 2 years of life means that recall is required over a relatively short period (e.g., over 6–24 months in Wimpory et al. 2000).

Psychometric Data The internal consistency of the DAISI was determined using the Kuder-Richardson-20-statistic (for dichotomous data) on retrospective use of DAISI with parents of twenty 2–4-year-olds, prior to any autism diagnoses (Wimpory 1995). This gave a standardized item alpha coefficient of 0.9. Significant autistic versus developmentally delayed nonautistic group differences emerged from analysis of variance on the total DAISI scores, F (1,18) ¼166.94, p < .0001. As indicated above,

analysis of variance on the total DAISI scores, F (1,18) ¼166.94, p < .0001. As indicated above, Wimpory et al. (2000) reported 15 key items that differentiated the infancies of children subsequently diagnosed with autism (mean score ¼ 3.6, SD 2.4, range 0–7) from those with nonautistic developmental delay (mean score ¼ 15.7, SD 2.5, range 13–19; Mann–Whitney U ¼ 0, p < .0001). Distinguishing items, computed on an item by item basis (with Fisher’s exact one-tailed test), indicated impairments

computed on an item by item basis (with Fisher’s exact one-tailed test), indicated impairments in frequency/intensity of eye contact (p < .0001*) and its referential use (p < .0001*); pointing (p < .0001*) and following others’ points (p < .0001*); using noises communicatively (p < .0001*); preverbal turn-taking (p < .0004*); raising arms to be picked up (p < .0004*); offering and giving (p < .0004*); greeting (p < .005); showing objects (p < .005); sociability during play with toys (p < .005);

greeting (p < .005); showing objects (p < .005); sociability during play with toys (p < .005); socially directing anger/distress (p < .010); sociability during play without toys (p < .016); waving appropriately (p < .016); and enjoying lap games (p < .043). Asterisks indicate specific items that individually discriminated between the autistic and developmentally delayed nonautistic groups, following stringent Bonferroni correction for multiple comparisons.

For the above retrospective research, DAISI total scores correlated significantly with Childhood Autism Rating Scales (CARS) scores for the entire group ( .891, p < .0001; Wimpory 1995). For the subgroup with developmental delay, DAISI total scores and CARS scores showed a significant negative correlation (Spearman rank correlation –.86, p ¼ .001); this was not significant for the group with autism (Spearman rank correlation –.02, ns; Wimpory et al. 2000). Within each group, there was a

autism (Spearman rank correlation –.02, ns; Wimpory et al. 2000). Within each group, there was a relatively small range of DAISI total scores. The significant negative correlation in the case of control (nonautistic developmentally delayed) individuals is of note because here the individuals who were reported to show a number of social deficits on the DAISI (and thus achieved lower scores) were also those who were given relatively high scores for abnormality on the CARS. Stone et al. (2007)

also those who were given relatively high scores for abnormality on the CARS. Stone et al. (2007) concurrently employed the 15 key DAISI items that the retrospective study by Wimpory et al. had found significant (2000). Stone et al. (2007) reported significant group differences between infant siblings of 64 autistic spectrum disordered and 42 typically developing (TD) children (MD, 1.32; 95% Cl, 0.27–2.37). Autistic siblings’ mean scores were 12.8 (SD 3.2, range 0–15), while TD siblings’ mean

0.27–2.37). Autistic siblings’ mean scores were 12.8 (SD 3.2, range 0–15), while TD siblings’ mean scores were 14.4 (SD 1.2, range 10–15). Stone et al. (2007) also found that DAISI total scores correlated significantly with:

1. CARS total scores (0.74, p < .01) 2. Mullen Scales of Early Learning subscores (The Early Learning Composite; Visual Reception, Expressive and Receptive Language; 0.46; 0.28; 0.41; 0.39, respectively, all at p < .01)
3. Screening Tool for Autism in 2-Year-Olds total scores (STAT; –0.37, p < .01).
This last finding supports face validity for the DAISI as a parental report measure for broadly similar child social-communication constructs that are directly assessed by the STAT.

Clinical Uses The DAISI interview was designed for both clinical as well as research purposes. It has been employed for multi-agency clinical/educational diagnostic purposes in some services in England and Wales for over two decades. The expanded clinical form includes items assessing the triad of autistic impairments during both early and current functioning, while the published form focuses exclusively on aspects of sociability and communication in infancy. Parental responses are recorded

exclusively on aspects of sociability and communication in infancy. Parental responses are recorded verbatim, and each item that corresponds to a specific domain of behavior is scored as present or absent as indicated above, the interview relies on the relationship between the interviewer and the parent so that accurate and honest answers are more likely to be provided. DAISI’s clinical advantage over standardized diagnostic interviews is that it can be administered much more quickly and

over standardized diagnostic interviews is that it can be administered much more quickly and affords a more conversational experience, so assisting the clinician in gaining a good rapport with clients within routine diagnostic assessments.

The DAISI Schedule The following section identifies the specific domains of functioning assessed using the DAISI. Each domain contains a key question (italicized in bold below) and may also have associated questions. These are designed to elicit a comprehensive description of behavior relevant for the domain under consideration. The key questions, identified by corresponding item numbers, are those used to determine DAISI scores, as outlined below. These key questions may be substituted by

those used to determine DAISI scores, as outlined below. These key questions may be substituted by and/or preceded and/or followed by associated questions. This arrangement is designed to allow the interviewer to assist parents both to gain confidence in answering the key questions and to clarify their answers to those questions. Responses to each key question (either direct or indirect via associated questions) determine the score for its corresponding numbered DAISI item. Examples and

associated questions) determine the score for its corresponding numbered DAISI item. Examples and criteria for positive and/or negative replies are shown in regular italicized print in the section below. Questions are arranged below in the order most compatible with the flow of a natural conversation. In this way, responses to more than one domain may be recorded from one segment of conversation. For example, greeting and reaching up to be lifted up from a cot are juxtaposed although these are

For example, greeting and reaching up to be lifted up from a cot are juxtaposed although these are later analyzed separately as aspects of sociability and gestural communication.

Eye Contact (Item 1) **Did he/she look at you more or less readily as a baby (<2 years) than he/she does nowadays?**

Did his/her readiness to give eye contact change at any stage (<2 years)? Key Question for Item 1: **Did he/she have difficulties in the frequency and/or intensity of eye contact?** (This item and item 2 below are subject to a special scoring procedure: They are scored as negative when direct observation of the child reveals poor eye contact at the time of diagnosis and where parents report both that their child’s readiness to give eye contact has not changed since infancy, and that they do not

their child’s readiness to give eye contact has not changed since infancy, and that they do not see eye contact as a problem for their child.)

Soothability from Crying (Items 4 and 5) How would you stop him/her crying as a baby? Key Question for Item 4: **Could you stop him/her crying by picking him/her up?** (Positive responses include those where this strategy worked for at least a few months of infancy.)

Key Question for Item 5: **Could you stop him/her crying by just talking to him/her?** (Positive replies include communicative use of “baby talk,” i.e., employing singing, vocalizations, and facial expressions but no physical contact or movement. Negative responses include those for infants described as never interested in social interaction.)
 Greeting, Requesting to Be Picked Up, and Waving (Items 3, 15, and 14, respectively)

Greeting, Requesting to Be Picked Up, and Waving (Items 3, 15, and 14, respectively)
What would he/she do when you went to his/her cot after he/she had woken (naturally) from a sleep? Where would he/she be looking? What would her/his face be like?

Key Question for Item 3: **Would he/she greet you?** (Positive responses include manifest pleasure or excitement and/or appropriate facial expression while looking toward parents. Negative responses include a failure to look pleased on most occasions where there was potential for greeting.)
What would he/she do if he/she wanted to come out of the cot or be lifted from the floor?
Would he/she touch you or the cot while reaching up as if to climb up/out physically?

Would he/she touch you or the cot while reaching up as if to climb up/out physically?
Did you need to offer your own arms for him/her to lift his/her? Key Question for Item 15: **Would he/she spontaneously lift her arms to be picked up?** (Positive responses cover spontaneous non-tactile gesturing including the support of vocalization, eye contact, etc.)

Would he/she appear to notice if someone he/she knew well was leaving? What would he/she do? Would he/she wave if they (or you) waved? Would he/she need you to tell him/her to wave or to lift his/her hand for her? Would he/she wave spontaneously? How did he/she do it? (i.e., to distinguish from arm flapping) Where would he/she be looking? Key Question for Item 14: **Would he/she spontaneously and appropriately wave goodbye?** (Positive responses cover spontaneous waving with apparently

and appropriately wave goodbye?** (Positive responses cover spontaneous waving with apparently appropriate communicative intent, as indicated by context, looking toward the other’s face, etc. Negative responses include only brief acquisition of waving and/or waving an arm for social or motoric stimulation without apparent understanding of its gestural significance.)

Lap Games (Items 7 and 8) What did he/she tend to do during lap games? Key Question for Item 7: **Did he/she enjoy lap games?, e.g., “Round and round the garden,” “Peek a boo.”** (Negative responses included a lack of interest in lap games.)
Would he/she watch you doing the actions? Would he/she try to join in? How did he/she show his/her enjoyment? Key Question for Item 8: **Did he/she actively participate?** (Positive replies require use of body actions, e.g., imitative clapping.)

Social Engagement During Play With and Without Toys (Items 9 and 6, respectively)

Would he/she be happy for you to play with him/her? How would he/she react if he/she was already occupied with toys? Key Question for Item 9: **Would he/she be happy for you to join in his/her play with toys or would he/she regard that as an intrusion and prefer to play alone?** (Positive responses include descriptions of infants apparently happy for parents to play alongside them without parents feeling excluded.)

Would you need toys in order to play with him/her? Key Question for Item 6: **Could you amuse him/her without toys (if say, you were together on a bus or in a doctor’s waiting room where no toys were available)?** (Positive replies may include chatting and/or singing, play with body parts, etc.)
 Showing, Offering and Giving, Referential Eye Contact, Pointing, and Following Points (Items 11, 10, 2, 12, and 13, respectively)

Did he/she sometimes want to draw your attention to his/her toys? (Or did he/she seem too interested in them to share them with anyone else?) Key Question for Item 11: **Would he/she show you things?** (Positive replies include either holding an object up to another’s field of view or pointing to it and simultaneously looking at the other person. Such referential eye contact also scores positively on item 2, below. Communicative pointing also scores positively on item 12, below.) (Depending on

on item 2, below. Communicative pointing also scores positively on item 12, below.) (Depending on responses to previous questions. . .)

What would he/she do if he/she wanted you to share his/her experience of a toy? Would he/she hold it up for you to see? Where would he/she be looking? Key question for Item 10: **Would he/she offer and give objects?** (Positive replies include pausing and looking to the recipient’s face before giving.)

Would he/she give a toy (or other item) to you? Was this in response to a request or would it be spontaneous? Have you known babies who like to give something (e.g., a biscuit) to other people . . . babies who give it very carefully, often breathing heavily as they do so, and then they want it back as soon as they have given it?
Did he/she like to play giving and taking games like that or did he/she tend to “post” or place objects on you instead?

Where would he/she be looking before and during the act of giving? Key Question for Item 2: **Would he/she look both to where he/she was pointing and to you?** (Referential eye contact)

What would he/she do if he/she wanted something (e.g., a biscuit) out of reach? (If reaching) How would he/she position his/her fingers? Where would he/she be looking? Key Question for Item 12: **Would he/she use pointing communicatively?** (Positive replies include eye- or finger-pointing to request and show items of interest accompanied by eye contact. Negative responses include extension of index finger with no apparent communicative intent.)

What would he/she do if she saw something of interest like a plane, or an animal across the street?
(If reaching) How would he/she position his/her fingers? Where would he/she be looking? Did he/she take notice if you pointed at something or did he/she tend to be preoccupied with his/her own interests?
What would he/she do if you pointed (at near and far objects, e.g., an animal across the street, the correct hole for a puzzle piece, etc.)?

Key Question for Item 13: **Could she follow your pointing gestures?** Where would he/she look . . . toward your finger or to where you were pointing?  Expressing Directed Anger and Distress (Item 18) Did he/she have tantrums? Where would he/she be looking during these? What would he/she do if he/she was hurt? Would he/she let you know how he/she was hurt? Where would he/she be looking? Key Question for Item 18: **Would he/she appear to direct anger and/or distress with apparent communicative

for Item 18: **Would he/she appear to direct anger and/or distress with apparent communicative intent?** (Negative responses include toddlers who would avoid looking toward other faces during expressions of anger and/or distress. Positive responses include toddlers who directed anger toward parents when feeling physical pain unrelated to parental behavior.)

Teasing (Item 16) Did he/she understand “No” even if he/she chose to ignore it? Have you noticed some toddlers will still do what they have been told not to do (e.g., touch an electric switch) and will be smiling and looking to their parents at the same time as if they are doing it again because they have been told not to do it?

Was he/she a toddler who was interested in doing that? Can you give examples? Where would he/she be looking? What would his/her face be like as he/she did it? Key Question for Item 16: **Would he/she tease you?** (Negative responses include enjoyment of playful reprimands, such as being chased, rather than manifesting playful provocation/teasing per se.)

Can you think of other ways in which he/she would tease you?  Preverbal Turn-Taking and Use of Vocalizations (Items 19 and 17, respectively) Did he/she make baby noises? (Positive responses enable progression to the following questions.) Did he/she make these just for him/herself or did he/she seem to be making them for you to listen to him/her?

How did he/she show that they were for you? Where would he/she be looking? Key Question for Item 19: **Were his/her baby noises communicative?** (Negative responses include an absence of babbling or parental inability to recall communicative use of babbling despite parental expectation that this occurs.)

Have you noticed how some babies like you to join in with their babbled noises, so that there is a turn-taking pattern between you and them – as if the two of you are speaking another language? (Positive answers are required before proceeding.)
Was he/she the kind of baby who did that? Were you able to have babbling conversations with him/her? Did he/she use his/her early words for him/herself or for giving messages to you?

Where would he/she be looking when using them? Key Question for Item 17: **Did he/she take turns before he/she could talk, e.g., with babbled noises?** (Positive responses include turn-taking flows established by (a) infants repeating a babbled noise as if with communicative intent apparently in response to an adult’s imitations of those noises and (b) active silent participation in a flow of interaction using appropriate facial expressions and communicative body actions during a period of

interaction using appropriate facial expressions and communicative body actions during a period of mutism.)

See Also ▶ADI-R ▶CARS ▶STAT  Kerim M. Munir1,2, Tara A. Lavelle3, David T. Helm1, Ikram Rustamov4 and Muhammad Waqar Azeem5,6,7
1Division of Developmental Medicine, Boston Children’s Hospital, Boston, MA, USA
2Harvard Medical School, Boston, MA, USA 3Center for Value and Risk in Health (CEVR), Tufts Medical Center, Boston, MA, USA
4Child Mental Health and Development Center, Azerbaijan Medical University, Baku, Azerbaijan

5Sidra Medical and Research Center, Cornell Weill Medical College, Doha, Qatar 6Department of Psychiatry, Sidra Medicine, Doha, Qatar 7Weill Cornell Medicine, Doha, Qatar  Definition Autism spectrum disorder (ASD) represents a group of lifelong, complex neurodevelopmental disorders emerging during early childhood and interfering with a person’s ability to socially relate to and interact with others. According to the American Psychiatric Association Diagnostic and Statistical Manual, Fifth

others. According to the American Psychiatric Association Diagnostic and Statistical Manual, Fifth Revision (DSM-5), the current diagnostic criteria for ASD include deficits in: (a) social interaction and nonverbal communication; and (b) restricted, repetitive movements, behaviors, and interests (American Psychiatric Association 2013). The World Health Organization (WHO) International Classification of Diseases, Tenth Edition (ICD-10) characterizes ASD by impairments in three core areas: social

of Diseases, Tenth Edition (ICD-10) characterizes ASD by impairments in three core areas: social interaction; communication; and restricted, repetitive behaviors (World Health Organization 1994). The ICD-11 is scheduled for release in 2018 and expected to follow the new ASD nosology.

Historical Background According to the United States Centers for Disease Control and Prevention, ASD now affects 1 in every 68 children (1 in 42 boys and 1 in 189 girls) in the US (Christensen et al. 2016). In 2010, there were approximately 52 million people living with ASD worldwide (Elsabbagh et al. 2012; Baxter et al. 2015). The data on prevalence of ASD in low- and middle-income countries (LMICs) is limited. Most research into the epidemiology, causes, clinical presentations, diagnosis,

(LMICs) is limited. Most research into the epidemiology, causes, clinical presentations, diagnosis, and treatment of ASD is based on studies conducted in high-income countries (HICs). This has led to a misperception that ASD is more prevalent in HICs versus LMICs. For example, while only 20% of the world’s current population resides in HICs, 86.5% of all reported cases of ASD have been in HICs (Elsabbagh et al. 2012; Population Reference Bureau 2015). However, it is important to note that

(Elsabbagh et al. 2012; Population Reference Bureau 2015). However, it is important to note that current data in HICs shows that ASD occurs across all levels of socioeconomic status (SES), and the reported association of ASD and higher SES has been due to selected study sampling. Furthermore, uneven rates of diagnosis point to variation in ASD surveillance rates by race and ethnicity, underscoring that children in resource poor regions in HICs may not be appropriately identified (Center for

that children in resource poor regions in HICs may not be appropriately identified (Center for Disease Control and Prevention 2016; Christensen et al. 2016). Barring geographic environmental and genetic variation, there is no reason to expect that prevalence of ASD in LMICs will be lower than that consistently reported in HICs. In 2007, the United Nations (UN) representative from Qatar had successfully proposed a UN General Assembly resolution creating World Autism Awareness Day. This day,

proposed a UN General Assembly resolution creating World Autism Awareness Day. This day, recognized on 2 April every year, encourages all member states to take measures to raise awareness about ASD throughout the world. Further, on World Autism Awareness Day in 2016, the UN General Assembly convened an expert panel that emphasized that children and adults with ASD and other neurodevelopmental disorders (NDDs) have a special place at the heart of the UN Sustainable Development Agenda and

disorders (NDDs) have a special place at the heart of the UN Sustainable Development Agenda and implementation of the Sustainable Development Goals. In 2016, the World Innovation Summit in Health hosted the Autism Forum entitled “A Global Framework for Action” (Munir et al. 2016). There is a growing momentum recognizing ASD globally, and advocating for the needs and rights of children in LMICs with ASD, and their families. There is a need to strengthen national capacities in LMICs within a

with ASD, and their families. There is a need to strengthen national capacities in LMICs within a larger context of global advocacy. This chapter will outline the current knowledge of ASD in LMICs, and highlight challenges currently faced by families, communities, and countries as they aim to advocate for the rights of children with ASD. This chapter will also offer policy recommendations to overcome these challenges.

Current Knowledge Detection and Diagnosis of ASD While the timely detection of ASD is a challenge globally, it is a particular problem in LMICs where there is less general surveillance for developmental delays in health and education settings. There are also less opportunities for targeted ASD screening, developmental evaluations, and eventual diagnoses made among high-risk children. In many LMICs, there is little general knowledge about NDDs, and many parents are not aware of the appropriate

there is little general knowledge about NDDs, and many parents are not aware of the appropriate timing for developmental milestone skills related to speech and language (Ertem et al. 2007). Review of previous studies in sub-Saharan Africa (SSA) shows that among health workers, a small percentage views ASD as treatable while few others see it as being preventable (Bakare et al. 2016). Community perception of ASD in SSA has a wide range of implications ranging from limited understanding of the

perception of ASD in SSA has a wide range of implications ranging from limited understanding of the disorder, fear of stigmatization, and social exclusion, in the absence of appropriate policies to improve care and community inclusion. As a result, even when parents do have developmental or behavioral concerns, they often still do not reach out to health care providers because they mostly associate the clinicians with treating acute illnesses. In addition, in many LMICs, the stigma around ASD,

the clinicians with treating acute illnesses. In addition, in many LMICs, the stigma around ASD, as with other NDDs, may be so pervasive as to discourage parents from seeking medical attention when a concern arises, or denying further evaluation or treatment when suggested to them from a medical or educational professional. In fact, most clinicians in LMICs are not trained in developmental milestones or how to assess them during routine pediatric clinical care (Durkin et al. 2015; Bakare et al.

or how to assess them during routine pediatric clinical care (Durkin et al. 2015; Bakare et al. 2016). As a result, developmental delays often go unnoticed also by clinicians, thus children are not referred for further evaluation that could lead to a proper diagnosis. There is also a severe shortage of clinicians who would facilitate more targeted screening, evaluation, and diagnostic procedures for children with ASD and other NDDs in LMICs. Those that do have proper training are mostly

for children with ASD and other NDDs in LMICs. Those that do have proper training are mostly congregated in urban settings, leaving large numbers of children in rural regions without diagnostic resources. In the school systems, teachers also lack training and knowledge about ASD, and therefore typically do not pick up on early signs of ASD among children in their classrooms.

Evidence-Based Therapies Young children with ASD require interventions that target language skills, joint attention, and emotional reciprocity, and therefore treatments should begin as early as possible. Research in HICs has found that early interventions initiated before 3 years of age are likely to have the greatest positive impact on outcomes (Zwaigenbaum et al. 2015). There are evidence-based early interventions, including Applied Behavioral Analysis (ABA); other treatments include speech

early interventions, including Applied Behavioral Analysis (ABA); other treatments include speech and language, occupational and physical therapies, social skills groups, as well as management of comorbid conditions such as associated medical (e.g., sleep and gastrointestinal) and neurological (e.g., seizure) disorders, anxiety, and challenging and maladaptive behaviors. In contrast to HICs, the majority of children in LMICs have no access to treatment. In South East Asia with the largest

the majority of children in LMICs have no access to treatment. In South East Asia with the largest number of children, between 2 and 9 years, the key barriers to treatment continue to include both the paucity of interventions, as well as lack of trained staff to deliver them outside the reach of specialist centers (Patel et al. 2013). It is feasible to adapt early interventions evidenced in HICs by using “task-shifting” strategies, as demonstrated by the Parent-mediated intervention for ASD in

by using “task-shifting” strategies, as demonstrated by the Parent-mediated intervention for ASD in South Asia (PASS) randomized control trial (Rahman et al. 2016). The development of such opportunities is likely to contribute to more optimal care and outcomes in LMICs. The quality of services that are provided is often very variable as well. Children in rural areas, in particular, often have limited access to therapeutic services, which may only be provided in urban settings. Furthermore, many

access to therapeutic services, which may only be provided in urban settings. Furthermore, many families in LMICs do not have health care coverage to pay for the high cost of services related to ASD and there has been limited adaptation of services that can be provided at lower cost to children and families with few exceptions (Rahman et al. 2016).

Family Support Systems Families are the constant and consistent source of support for children and as such can wield tremendous influence on the growing and developing child. In all corners of the world, especially where resources are scarce, the family is undoubtedly the vehicle by which education and thus “intervention” and direction for the child can be provided most efficiently and possibly most effectively. Families whose children are perceived as different feel isolated, alone, and often

effectively. Families whose children are perceived as different feel isolated, alone, and often stigmatized, and too often take on self-blame (Dunst et al. 1994). This is especially true for parents of children with ASD. The pervasive lack of knowledge about ASD magnifies self-doubt, isolation, and stigma that plague many families. Families struggle to know how best to deal with their child’s disability in the home setting or in the community (Hecht et al. 2011) and may not know anyone to ask

in the home setting or in the community (Hecht et al. 2011) and may not know anyone to ask or to mentor them. The lack of knowledge about ASD coupled with the lack of available role models also prevents the family from learning how their child is best taught and responded to in their homes and communities. This leads to isolation and feelings of stigma. Many parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of

have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities (Emerson 2007). They thus often lack adequate financial resources to pursue formal instruction on how to teach or effectively intervene with their child’s special needs; and formal systems’ supports are underfunded and scarce (Seltzer et al. 2001; Parish et al. 2009). It is thus incumbent and timely that policy makers assist and support the training of families to best

is thus incumbent and timely that policy makers assist and support the training of families to best address the needs of the child with ASD and related neurodevelopmental disabilities. This may be especially true in rural and LMIC contexts.

Education Education has been globally recognized as a basic human right (UN 2008). This perspective has been reflected in a number of international policies including the United Nations Convention on the Rights of the Child, the International Covenant on Economic, Social and Cultural Rights, and the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD; UNESCO 2015). Despite this policy and its current adoption by 162 member states (as of March 22, 2016), children with

this policy and its current adoption by 162 member states (as of March 22, 2016), children with disabilities continue to face barriers accessing an inclusive public education in many LMICs. In fact, approximately one-third of the over 60 million children still excluded altogether from public schools worldwide are children with disabilities (UNESCO 2013). The goal of providing children with an inclusive education in mainstream public (government funded) schools is an important one. The path from

education in mainstream public (government funded) schools is an important one. The path from exclusion to inclusion is a continuum, and many communities fall somewhere in between with their current practices, which may also vary depending on the severity of a child’s disability.

While many LMIC countries promote segregated special schools as a means to educate children with ASD and other disabilities, evidence has shown that this can increase prejudice and stigma in societies, and further perpetuate discrimination later in life (Frederickson and Cline 2002). Because segregated schools are often only present in urban areas of LMICs, relying on these separate schools to educate children with disabilities may result in children from rural regions excluded from the

to educate children with disabilities may result in children from rural regions excluded from the education system altogether. Integration has been a stepping-stone for many countries as they move towards the goal of inclusion. Inclusion with proper support services and accommodation for children with disabilities has been presented as the model learning environment, with evidence showing that it can help all students, both with and without disabilities, reach their full potential (Mariga et

it can help all students, both with and without disabilities, reach their full potential (Mariga et al. 2014). Children with moderate to severe disabilities, such as children with both ASD and an intellectual disability, are at highest risk of being excluded from the mainstream educational system in their country. Those with mild disabilities, such as children with ASD without an intellectual disability, may receive their education in the mainstream public education system, but often missing

may receive their education in the mainstream public education system, but often missing the needed modifications and support services, such as speech therapy and occupational therapy. The lack of enforcement of existing policies that guarantee children with ASD and other disabilities the right to an equal, inclusive education is often due to a shortage of properly trained teachers and appropriate school curriculum. Many LMICs do not provide special education training for teachers, or provide

school curriculum. Many LMICs do not provide special education training for teachers, or provide general education teachers with training on how to accommodate a child with a disability in their classroom. Furthermore, appropriate school curriculum and other educational modifications are not present in most school systems in LMICs. Nor do they have resources to develop their own learning programs and materials for children with ASD, and do not have a system for accommodating children with ASD

and materials for children with ASD, and do not have a system for accommodating children with ASD and other disabilities into a regular classroom.

Research and Surveillance Health research is an important tool for improving the lives of children in LMICs. However, despite the fact that the greatest number of children with ASD live in LMICs, very little relevant research has been conducted in these settings (Durkin et al. 2015). Studies on important topics related to the ASD have mainly been conducted in HIC and therefore provide an incomplete and biased view of the global ASD burden and challenges facing the autism community worldwide.

and biased view of the global ASD burden and challenges facing the autism community worldwide. In particular, there is a critical gap in quality epidemiologic research that would accurately describe the prevalence of ASD and other neurodevelopmental disabilities in LMICs. Proper epidemiologic studies involve the use of validated research tools for systematic clinical screening and diagnosis. Cost of illness studies are also needed to help governments understand the true economic burden of ASD

of illness studies are also needed to help governments understand the true economic burden of ASD in their country. These types of studies are important for planning and advocacy purposes, resource allocation, and to create a strong justification for the development of provider and researcher training programs, service provision, and additional research. Additional studies are also needed to evaluate the effectiveness of interventions delivered to children with ASD and other neurodevelopmental

the effectiveness of interventions delivered to children with ASD and other neurodevelopmental disabilities in LMICs and the resources required to provide these services. Ideally, results from such studies would enable LMICs to more efficiently utilize their limited mental health resources by taking a systematic approach to prioritize the utilization of the most cost-effective interventions for treating children with ASD and other neurodevelopmental disorders. However, researchers in LMICs face

children with ASD and other neurodevelopmental disorders. However, researchers in LMICs face a number of barriers in their attempt to conduct quality research related to ASD and mental health care more generally (Sharan et al. 2007). For instance, many LMICs do not prioritize the research questions that would maximize health gains and other priorities within their country. As a result, there is a risk that external research funders will pursue a research agenda that meets their own goals, or

a risk that external research funders will pursue a research agenda that meets their own goals, or the goals of the larger international community, which may not be consistent with the needs of the country. In addition, research is often not prioritized because it rarely informs policy development in the local context. And too few health researchers in LMICs are trained in rigorous standardized methods, including the responsible conduct of research. Researchers without proper training may

methods, including the responsible conduct of research. Researchers without proper training may produce studies that are of poor quality and have biased research results. Data emerging from HICs underscores importance of controlling for biases in detection when conducting epidemiological studies of ASD.

Future Directions Diagnosis To increase rates of early diagnosis, there is a need to first increase the surveillance of developmental outcomes in the home, community, health care, and education settings. Education and awareness campaigns have been successful in educating parents in LMICs about ASD. Within the health care system, there is a critical need to provide training and education to clinicians at the primary care level while also developing additional specialized training programs for

at the primary care level while also developing additional specialized training programs for clinicians to perform more targeted screenings and evaluations for ASD and other neurodevelopmental disorders. At the primary care level, rates of diagnoses can be increased by providing information to pediatricians about the appropriate developmental milestones as well as signs of ASD and other neurodevelopmental disorders. This information should also be incorporated in the medical curriculum of

disorders. This information should also be incorporated in the medical curriculum of clinicians. Guidelines should be developed that include strategies to include general developmental surveillance into routine pediatric visits. Structured developmental pediatrics, psychology, and child psychiatry training programs are also needed to train more clinical personnel to perform screenings and evaluation procedures targeted at individuals deemed to be at high risk of ASD and other developmental

procedures targeted at individuals deemed to be at high risk of ASD and other developmental disabilities based on surveillance in the home, clinic, school, and community settings. The training of these specialists must occur in parallel with greater accessibility to simpler surveillance, screening, and diagnostic tools that can be used with fewer resources than those currently used in HIC. Teachers and educators are valuable resources who spend their days working with, playing with, and

Teachers and educators are valuable resources who spend their days working with, playing with, and watching children. They are already familiar with some developmental milestones. They are also a trusted source for parents. The teachers in the LMICs can be trained in identifying developmental delays, both as part of their school curriculum and further educated on these needs while working in the classroom. Teachers learn about various milestones to watch for at different ages. These activities

classroom. Teachers learn about various milestones to watch for at different ages. These activities need to be appropriately adapted to the sociocultural context.

Evidence-Based Therapy LMICs need formal training programs for health professionals to develop expertise in evidence-based services. High intensity interventions commonly available in HICs should be adapted to be less resource intensive. Even so, the number of formally trained professionals in LMICs will increase slowly. While this formal capacity is built up, there is an opportunity to reach out to parents of children diagnosed with ASD and train them to provide services directly to their

out to parents of children diagnosed with ASD and train them to provide services directly to their children in their homes. Some evidence has shown that training parents to provide interventions to their child with ASD can result in favorable outcomes including increased language comprehension and reduction in severity of core symptoms of ASD (Oono et al. 2013, Cochrane Review). For services provided by health professionals, quality control mechanisms such as certifications for training and

by health professionals, quality control mechanisms such as certifications for training and licensing for programs are necessary to ensure adequate quality. Importantly, providing health care coverage to children with ASD and other neurodevelopmental disorders would help alleviate the cost burden faced by many families who struggle to pay for 11 intervention services of for their child. Expanding existing programs that provide health care coverage for some infectious diseases may be a starting

existing programs that provide health care coverage for some infectious diseases may be a starting point for providing coverage for larger range of services for chronic and mental illness, including ASD.

Family To maximize impact and broadly affect families’ quality of life, policy makers, governmental, and nongovernmental organizations (NGO’s), need to create and offer services and support to families raising children who have ASD. This is paramount in order for these families and their loved ones with ASD to attain their optimal health and reach their maximum human potential. This also aligns with Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (United

with Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (United Nations 2008). Community and governmental efforts that have proven to be most effective in assisting families includes the family voice. That is, by allowing families to become part of the national policy discussion, family concerns are more directly addressed (Hecht et al. 2011). Access to the perspectives of families allows professionals and systems to learn from first-hand experiences. This

of families allows professionals and systems to learn from first-hand experiences. This can result in adjustments to services that meet their needs resulting in improved support to families. A three pronged approach would include: (1) connecting families to each other; (2) creating programs; and (3) providing sustained support. This is important to up-to-date information, and to policy makers are the three most important elements that families have identified as critical in the effort to

are the three most important elements that families have identified as critical in the effort to support them and their affected child (Hecht et al. 2011).

(1) Connecting families to each other: These connections go a long way towards assisting families in recognizing that they are not alone; that there have been others who have experienced what they are facing and have been successful. Supplying families with needed information is crucial in assisting them in understanding and supporting their family member to reach their potential. These efforts have often been organized and directed by families seeking other families who have experiences

have often been organized and directed by families seeking other families who have experiences similar to their own. Family-led organizations and coalitions have shown to be an effective and low cost way to assist in these connections (will add citation). Policy and program directors can enhance these efforts through providing relatively minimal support to initiate and sustain structures (e.g., developing support groups, family events/activities) that allow families to connect to other

(e.g., developing support groups, family events/activities) that allow families to connect to other families. In situations where the internet is available, many connections can be initiated online where families can meet and even communicate directly with other families about their concerns (New England Genetics Collaborative 2016). These connections are enhanced when families receive up-to-date information about their child’s condition and how best to work with their child (ASC 1016). This is

information about their child’s condition and how best to work with their child (ASC 1016). This is an effective communication strategy that can work especially well in rural and less developed countries when the technology can be utilized. A successful initial effort has been to discover how families currently connect with one another. Leaders in the family movement must be identified and supported so that they can effectively articulate what families need. By inviting families into

and supported so that they can effectively articulate what families need. By inviting families into professional and governmental programs, the needs of families rise to the top and family perspective becomes evident and concerns are heard and addressed (see the ▶Family Therapy case study). Connecting families and family leaders to governmental initiatives is the third part of making connections. This is critical in the development of programs and is a major part of the social strategy that

This is critical in the development of programs and is a major part of the social strategy that begins to change what families can be offered and how families are supported. These efforts impact the policies that are then developed and that create programs. Policy makers begin to hear the family voice and understand the needs and what would help the most. Integration of the family perspective results in the development of the most effective strategies and policies to address the problems.

(2) Creating programs: Opportunities to participate in programs need to be developed that educate families about the conditions that impact their children. These educational programs can be made readily available by utilizing online training. Policy makers should create the infrastructure that grants the family access to professionals and community health workers. Training opportunities may vary such that information provided to families can range in complexity. Training in skill development

such that information provided to families can range in complexity. Training in skill development for the families in interacting with the affected family member, and support for parental coping skills may also be provided. This type of system support mechanism can assist in the child’s development and help to reduce parental stress. By inviting families to be part of the decision-making process, the programs are more likely to be successful. (3) Providing sustained support: Although early

the programs are more likely to be successful. (3) Providing sustained support: Although early diagnosis and treatment have been shown to increase the adaptability and skill levels of children with ASD, support for the growing child and family must be sustained over time. The developmental trajectory of the child brings about new challenges and additional or changing needs for support. Much information focuses on the young child and the early interventions provided shortly after diagnosis, but

focuses on the young child and the early interventions provided shortly after diagnosis, but support during development must also be addressed (Hecht et al. 2011). Programs need to be developed that assist the growing child in reaching their full potential throughout their development with an emphasis on supporting an individual’s independence and full inclusion into their communities. As families strive to better understand and provide for their children with ASD and related neurodevelopmental

strive to better understand and provide for their children with ASD and related neurodevelopmental disabilities, community health care workers and other professionals (including teachers or school personnel) can be an effective and efficient way to provide the first level of response for families. These teachers or community workers need to be trained to help families understand and cope with the issues they are facing. The Richmond-Kotelchuck Model for Policy Development can serve as a dynamic

issues they are facing. The Richmond-Kotelchuck Model for Policy Development can serve as a dynamic representation of what is needed for successful policy implementation and outcomes. We have the basic knowledge regarding expanding needs of families whose children have ASD, and there are social strategies that can be utilized that support families. It is up to the political will of policy makers to allow these supports to flourish by welcoming the family perspective into governmental

makers to allow these supports to flourish by welcoming the family perspective into governmental initiatives in this area (Richmond and Kotelchuck 1983).

Education There is a critical need to provide a broader set of training programs and certifications to teachers in LMICs that would facilitate the inclusion of children with disabilities into mainstream public schools. Ideally, these programs should be structured to provide special education training to a group of educators as well as provide general education teachers with skills that would allow them to knowledgeably accommodate children with disabilities such as ASD into mainstream,

allow them to knowledgeably accommodate children with disabilities such as ASD into mainstream, inclusive classes. There is also an opportunity to train special education teachers in skills and interventions that would improve their work with children with ASD specifically, including applied behavior analysis practices, and peer-mediated intervention (National Autism Center 2009). In parallel to these training programs, there is a need to provide special education teaching and learning

to these training programs, there is a need to provide special education teaching and learning resources that can be adapted by individual school systems. For children with ASD and moderate to severe intellectual disabilities, there may be a need to create a separate core curriculum based on the general needs of this group. Goals for these children may include educational, therapeutic, and socials ones, including: reading literacy and comprehension, math, social science, sensory therapy,

socials ones, including: reading literacy and comprehension, math, social science, sensory therapy, communication and social skills, and functional and life skills. Children with ASD without intellectual disabilities may follow a general education with added support and modifications based on their specific therapeutic and learning needs (Fogarty and Lofland 2015). Efforts should also be made to tailor special education goals to the specific needs of each child. A common strategy for doing this

special education goals to the specific needs of each child. A common strategy for doing this in higher resource settings is to create individual education plans (IEPs) for each child that takes into account their specific needs and goals. These plans can include special arrangements for learning tasks and exams, allowing for exemptions for assignments and assessments, extra time for learning tasks and tests, and adaptation of the conditions or the format of the task (UNESCO 2015). And finally,

and tests, and adaptation of the conditions or the format of the task (UNESCO 2015). And finally, systematically collected data is a central element to monitor educational goals for children with ASD and other disabilities. As part of this, governments need to provide a system and infrastructure that enables school systems to collect and report data on the progress of children in the school environment. This is typically done through annual assessments of student progress. To prioritize and act

This is typically done through annual assessments of student progress. To prioritize and act on these goals, countries should develop an action plan with clear targets and a timetable for implementation. This action plan should be overseen by a core group of administrators within the Ministry of Education that are held accountable for reaching targets by prespecified deadlines. These goals also create a parallel need for community awareness and education with regards to the benefits of

also create a parallel need for community awareness and education with regards to the benefits of including children with ASD and other disabilities into mainstream schools. These advocacy efforts are often best accomplished by building partnerships between schools, parents, and other stakeholders. It should also be noted that when full inclusion does not seem feasible for a given country, integration of children with ASD and other disabilities into the mainstream school through the coexistence

of children with ASD and other disabilities into the mainstream school through the coexistence of general education and special education programs within the same school could be an important step to full inclusion.

Research and Surveillance As an international priority, the World Health Organization (WHO) has urged countries to improve research surveillance frameworks and information systems to better capture data on ASDs (WHO 2013). On a national level, research questions should be prioritized to accommodate both needs and preferences of stakeholders in the local context, and should not be set solely by external research funders. Researchers and policy makers in LMICs should drive a research agenda

by external research funders. Researchers and policy makers in LMICs should drive a research agenda based on local factors including data that would help with advocacy efforts and creating priorities for national action plan. There have been different methods used to develop consensus on national research priorities, and the optimal approach will vary by context. However, nine common themes for best practices in priority setting have emerged in the literature and were summarized by researchers

practices in priority setting have emerged in the literature and were summarized by researchers at the WHO in 2010 (Viergever et al. 2010). These best practices are summarized in the appendix. Following the setting of ASD research priorities, it is important to have trained researchers to implement the action plan. However, there are often not enough highly trained researchers in LMICs due to a lack of research-training opportunities. To increase the number of training opportunities, LMIC

a lack of research-training opportunities. To increase the number of training opportunities, LMIC governments should partner with HIC governments and universities to prepare ASD researchers in high quality research methods. As these training partnerships develop, it is also important to internally strengthen mental health training opportunities in schools of public health and medicine (Sharan et al. 2007), including training in public health research methods, knowledge diffusion, leadership,

al. 2007), including training in public health research methods, knowledge diffusion, leadership, mentorship, and advocacy (Thornicroft et al. 2012). While funding for such capacity building is often a barrier, external donors should be encouraged to systematically include capacity-building programs and funding that is earmarked towards capacity-building goals in their projects. As this capacity is being developed, the ASD research environment also needs to be strengthened within LMICs.

is being developed, the ASD research environment also needs to be strengthened within LMICs. Critical components of an enabling research environment include appropriate research policies, including procedures to monitor and review ethical considerations in human subject research, basic infrastructure setup that includes administrative support within research centers to oversee research contracts and finance, equipment and supplies, and access to resources such as published literature (Sharan et

finance, equipment and supplies, and access to resources such as published literature (Sharan et al. 2007). To help with this last goal, in 2002, the WHO developed the Health InterNetwork Access to Research Initiative (HINARI) in collaboration with major publishers to enable researchers from LMICs to gain access to health research literature. Today approximately 15,000 journals (in 30 different languages) are available to health institutions in more than 100 LMICs (“HINARI Access to Research in

are available to health institutions in more than 100 LMICs (“HINARI Access to Research in Health Programme,” 2016). While the development of a stable research environment certainly requires upfront investment, over time it will save time and resources by allowing for easier administrative access to research funds and stronger partnerships with funded research programs. Integrating with the health research systems that are already in place, such as those for infectious diseases, can enhance

research systems that are already in place, such as those for infectious diseases, can enhance synergies and create a more sustainable national research platform going forward. Strong research partnerships between academic groups, NGO, and governmental entities also create more stable environments and important synergies moving forward.

See Also ▶Autism and the Caribbean ▶Brazil and Autism ▶China and Autism ▶Egypt and Autism ▶Ethiopia and Autism ▶Family Therapy ▶India and Autism ▶Kuwait and Autism ▶Macedonia and Autism ▶Pakistan and Autism ▶Palestine and Autism ▶Singapore and Autism Spectrum Disorder ▶Social Class and Autism ▶South Africa and Autism ▶STEM Education and Autism Spectrum Disorder ▶Turkey and Autism  Susan Latham Department of Communication Disorders, St. Mary’s College (IN), Notre Dame, IN, USA

Synonyms Childhood apraxia of speech (CAS)  Short Description or Definition A motor speech disorder characterized by difficulty acquiring speech, inconsistent sound errors, and groping behaviors during speech in the absence of weakness or paralysis. Symptoms are similar to verbal apraxia in adults; however, the underlying motor impairment significantly impacts phonological development (Maassen 2002). Hallmark characteristics consistent with childhood apraxia of speech include vowel errors or

2002). Hallmark characteristics consistent with childhood apraxia of speech include vowel errors or distortions, highly inconsistent speech errors, and inappropriate prosody.

Annette Karmiloff-Smith Birkbeck College, London, UK  Definition Developmental change is the process of change that occurs in human beings throughout development. Gene expression, brain function, cognitive processes, behavior, and environmental factors all involve multiple cross-level interactions, and all are characterized by dynamic developmental change over time. The study of any neurodevelopmental disorder, be it autism spectrum disorders (ASDs) or those of known genetic origin like Down

disorder, be it autism spectrum disorders (ASDs) or those of known genetic origin like Down syndrome (DS), Williams syndrome (WS), fragile X syndrome (FXS), or velocardiofacial syndrome (VCFS), must focus on full developmental trajectories from infancy to adulthood, examining how domains interact differently over time.

Developmental Change at the Genetic Level Many studies map specific genes to specific behaviors, but rare are those which take account of changing gene expression over time. Yet, if a gene is expressed widely initially and becomes increasingly confined to certain brain regions, or if a gene is expressed much more during learning but less during subsequent behavior, then the mapping from gene to behavior will change.

Developmental Change at the Neural Level The brain is not static; it changes significantly after birth in terms of structure and function. Functionally, one often witnesses the child brain initially processing inputs bilaterally. With development, however, neural networks become increasingly specialized and localized such that, for example, face processing starts out bilaterally and becomes predominantly right lateralized, over developmental time, in a network including the fusiform gyrus.

right lateralized, over developmental time, in a network including the fusiform gyrus. Likewise, the processing of certain aspects of language, for example, the use of, say, articles, starts out bilaterally but becomes increasingly left lateralized. By contrast, in some neurodevelopmental disorders, this progressive fine-tuning of specialization and localization of function fails to occur, and processing continues to be bilateral, even when the relevant overt behavior is quite proficient.

Developmental Change at the Cognitive Level In the study of neurodevelopmental disorders, it is critical to differentiate between identical overt behavioral scores and the underlying cognitive processes that sustain them. For example, face processing may be proficient in a disorder, with scores “in the normal range,” but the underlying cognitive processes rely on featural analyses, whereas in the typically developing child, processing has moved from featural to configural processing over

in the typically developing child, processing has moved from featural to configural processing over developmental time.

Developmental Change at the Environmental Level The environment is not static either. In all neurodevelopmental disorders, parents respond to the subtle differences in their atypical offspring, and thus, the dynamics of parent-child interaction change over time. For example, when learning language, the parents of typically developing children tend to let their children temporarily make overgeneralizations (e.g., “dog” for all animals), whereas parents of atypically developing children tend to

(e.g., “dog” for all animals), whereas parents of atypically developing children tend to correct immediately in the fear, perhaps, that they otherwise may never learn the correct term. However, overgeneralization often helps the development of categories (e.g., “animal”), and subtle differences in the ways in which the environment responds to the atypical child may give rise to the learning of individual exemplars rather than categories.

In conclusion, developmental changes must be taken into account at every level of analysis.

See Also ▶Developmental Delay ▶Developmental Milestones  Joyce Lum and Kristin Hodgson UNC TEACCH Autism Program-Charlotte, Charlotte, NC, USA  Synonyms Developmental shifts across lifespan  Definition The developmental continuum is a dynamic process characterized by milestones and challenges that occur from infancy throughout adulthood. The interaction of typical developmental issues with ASD is complicated. Milestones may be reached earlier or later than typical peers and at an atypical rate

complicated. Milestones may be reached earlier or later than typical peers and at an atypical rate or order; across domains, a scattered skill profile may also be noted. The challenges that an individual with ASD faces may mirror those of his or her typical peers (e.g., entering school, coping with bullying, developing self-image, managing life changes) but may be exaggerated or occur at different points in development. In addition, it is now recognized that ASD does not protect one against

points in development. In addition, it is now recognized that ASD does not protect one against other possible diagnoses or challenges, such as anxiety, depression, substance abuse, and other co-occurring disorders. Rather, the interaction of ASD with the typical developmental processes may exacerbate or trigger these issues. Therefore, an initial evaluation should be not solely for diagnosis but also for the comprehensive evaluation of cognitive, adaptive, behavioral, emotional, and psychiatric

for the comprehensive evaluation of cognitive, adaptive, behavioral, emotional, and psychiatric functioning and should be updated over time. There are currently many evidence-based treatment practices for individuals with ASD. However, the selection of appropriate treatments is complex, leaving families without clear direction in seeking and selecting services. Comprehensive evaluation identifies the current skill level and needs of an individual with ASD and thus facilitates the development of

the current skill level and needs of an individual with ASD and thus facilitates the development of specific goals. In addition, as the individual needs of the person with ASD changes, the appropriate treatment may also change, even throughout adulthood. Updated evaluations reveal the trajectory and pattern of skill development and the efficacy of any treatments being used and allow for selection of new treatments as appropriate. Families’ sense of urgency to intervene may vary across the

of new treatments as appropriate. Families’ sense of urgency to intervene may vary across the developmental continuum, with life transitions triggering a recognition of increased need. Like individuals, families are dynamic and follow a general developmental pathway. This is true of families with typical children as well as those with ASD though, as with individual development, the challenges experienced by the latter are likely to be exacerbated and the changes less linear. The particular

experienced by the latter are likely to be exacerbated and the changes less linear. The particular needs of a family with a child with ASD tend to correspond to the age of the child. When the child is an infant/toddler/preschooler, families are recognizing developmental differences and managing the impact of these on the family, then dealing with diagnosis of ASD and associated grief. In the middle childhood years, families focus on school concerns, adaptive skills, and issues related to

middle childhood years, families focus on school concerns, adaptive skills, and issues related to puberty. In adolescence and adulthood, common themes center on collegiate, vocational, and/or residential preparation as well as self-advocacy, guardianship, and interpersonal supports. This pattern of development is not universal, however. Just as professionals must fully assess an individual to ascertain skill level before implementing intervention, they must understand the current family

to ascertain skill level before implementing intervention, they must understand the current family interactions, challenges, needs, and foci so as to have a greater impact on that family. Current recognition of the importance of adaptive behavior provides an opportunity for families to increase positive outcomes through intervention and teaching in the home and community to facilitate increases in independence across the lifespan. The developmental continuum contributes to a founding principle

independence across the lifespan. The developmental continuum contributes to a founding principle of the UNC TEACCH Autism Program, which is that of family involvement in service delivery. In working with clients, TEACCH promotes the view that the specific needs of the individual with ASD can be best met by recognizing the family’s needs and by working simultaneously with caregivers to address them. TEACCH has always seen parents and caregivers as the experts, advocates, and teachers for their

TEACCH has always seen parents and caregivers as the experts, advocates, and teachers for their children and the professional’s role as one of the facilitators in helping the individual with ASD to maximize their level of independence and in helping family members gain additional tools to be as effective as possible in their roles. There is a current recognition that aging individuals with ASD continue to need support that may differ from that at younger ages, as their health and financial

continue to need support that may differ from that at younger ages, as their health and financial needs increase and their family support circle may decrease. Across the developmental continuum, the needs of individuals, families, and support systems must be the focus of assessment and intervention in order to most effectively serve individuals with ASD.

See Also ▶Clinical Assessment ▶Informal Assessment  Fred R. Volkmar Child Study Center, Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology, Yale Child Study Center, School of Medicine, Yale University, New Haven, CT, USA

Synonyms Cerebral palsy; Dyspraxia  Short Description or Definition Children who present marked difficulties with motor movements have been known since ancient times. Terms like “cerebral palsy” have been used in the past particularly to refer to situations where these problems appear to relate to some specific process, e.g., birth trauma. Although a medical etiology is sometimes seen, this is less likely in cases that are less severe. The term “developmental coordination disorder” is

is less likely in cases that are less severe. The term “developmental coordination disorder” is currently used.

Categorization In DSM-IV, this condition is defined based on the presence of motor difficulties greater than expected (given age or developmental level) and not due to some other conditions like autism. Motor difficulties are sometimes seen with other developmental problems, e.g., language or learning disorders. Interestingly some work has been done on the constellation of social-emotional difficulties, motor, and attentional problems (the DAMP syndrome; see Ehlers et al. 1997).

Epidemiology The condition may be seen in up to 6% of children of school age. Boys are more frequently diagnosed than girls (although various factors may make it less likely that subtle difficulties in girls lead to lower rates of referral).

Natural History, Prognostic Factors, and Outcomes Various factors determine outcome. Often the ultimate outcome is best when motor difficulties are mild and isolated (i.e., not associated with other developmental problems). Sometimes motor delays can lead to other problems such as social isolation and, in turn, to anxiety and mood problems.

Clinical Expression and Pathophysiology Motor skill difficulties can arise because of a host of factors. These range from problems during pregnancy in the mother, birth trauma, and perinatal difficulties (e.g., hypoxia or severe prematurity). Speech-language issues can be noted reflecting, in some cases, oral motor difficulties. Often a combination of some degree of developmental immaturity and a more specific motor vulnerability is involved.

Evaluation and Differential Diagnosis Neurological and specialized occupational and physical therapy evaluations are indicated if motor difficulties are severe and/or significant. The presence of unusual movements, problems with hyper- or hypotonia, and of specific neurological symptoms can also prompt referral. Various tests of gross and fine motor skills as well as visual motor integration and of dexterity can be administered. These help to document areas of difficulty and establish

and of dexterity can be administered. These help to document areas of difficulty and establish baselines for intervention. In some cases, use of auxiliary aids/devices may be helpful, e.g., in children with Asperger’s disorder who have problems with cursive handwriting, use of a laptop to teach keyboarding skills can be indicated.

Treatment Rehabilitative approaches are helpful. Both occupational and physical therapy approaches can be used to address fine and gross motor problems. Within schools, adaptive physical education can also be helpful.

See Also ▶DAMP Syndrome ▶Language Disorder ▶Occupational Therapy (OT) ▶Physical Therapy  Michelle Lestrud The Gengras Center, University of Saint Joseph, West Hartford, CT, USA  Definition Developmental delay is a significant lag in reaching the typical childhood milestones in the areas of language; cognition; social, emotional, adaptive functioning; and motor development. Each milestone is reached within a certain number of months based on research of typically developing children. When a

within a certain number of months based on research of typically developing children. When a child does not reach one or more of the milestones during the expected time frame, then he or she may be suspected of having a developmental delay. In the context of public education, the IDEA definition of developmental delay is only inclusive of children aged three to nine and lists physical development, cognitive development, communication development, social or emotional development, and adaptive

cognitive development, communication development, social or emotional development, and adaptive development as the areas to assess for a suspected disability. Children with autism often display delays in several of these areas, which may be the first warning signs that lead to further assessment and evaluation. Assessing developmental delays should be a component of diagnosing autism as the key deficits that characterize the disorder are directly linked to skills typically learned during

key deficits that characterize the disorder are directly linked to skills typically learned during natural developmental cycles. Skills that may be deficient in early development for individuals with autism include areas such as basic purposeful communication, initiating social interactions, and imitating functional use of objects or toys. Developmental delays may result in gaps in skill acquisition and/or performance and create widely varying strengths and weaknesses in some children.

acquisition and/or performance and create widely varying strengths and weaknesses in some children. Evaluations used to assess developmental delays vary among practitioners and typically include a measure of adaptive functioning with assessments such as the Vineland Adaptive Behavior Scales. This rating scale can be used to document delays in social and communicative development in individuals with autism. In addition, there are a number of motor assessments available, tests to measure

with autism. In addition, there are a number of motor assessments available, tests to measure cognitive levels, and specific communication assessments.

See Also ▶Developmental Milestones ▶Intellectual Disability  Isabelle Rapin Neurology and Pediatrics (Neurology), Albert Einstein College of Medicine, Bronx, NY, USA
 Synonyms Academic disability; Specific learning disability  Definition Learning disability is not used here to refer to overall intellectual handicap (i.e., “mental retardation”).

* Developmental disability refers to unexpected delay or deficiency apparently healthy young children experience in the acquisition of a learned cognitive/intellectual skill (as opposed to a sensory-motor skill) despite overall intellectual competence, attention and motivation, lack of auditory or visual handicap, and sufficient exposure to appropriate models and educational opportunity in an adequately supportive and nurturing environment.

* Developmental disabilities are extremely prevalent; they are dimensionally defined with fuzzy borders even though they denote atypical development of particular brain circuitries.
* They are both genetically and environmentally influenced.  Major Types 1. Developmental language disorder (specific language impairment (SLI), dysphasia) – in affected infants, the disorder presents as variably delayed/impoverished expressive language. There are three main clinical types, each with subtypes:

a. Expressive type: impaired speech production and articulation (phonology) with adequate comprehension. Prognosis generally fairly good, except in the most severe subtype – verbal dyspraxia (not to be confused with oromotor disability, a deficit in motor control of the speech musculature).

b. Mixed receptive/expressive type: comprehension equal to or somewhat better than expression. Phonology, grammar, and vocabulary affected. Prognosis variable, often the harbinger of dyslexia, and poor when phonologic decoding is severely defective.
    c. Mainly receptive type: impaired comprehension of discourse. Often overlooked when speech articulation, grammar, and vocabulary are spared. Particularly frequent but not exclusively so in verbal children on the autism spectrum.

Note: Language disorders in children on the autism spectrum (ASD) – Pragmatics, i.e., the communicative/conversational use of language, universally, characteristically, and permanently impaired. The prevalence of types of language disorders in ASD children differs from that of dysphasic children: some have mixed expressive/receptive disorders; very few have expressive disorders with adequate comprehension; most verbal children have receptive disorders with telltale echolalia, use of scripts,

most verbal children have receptive disorders with telltale echolalia, use of scripts, incessant questioning, perseveration on self-selected topics, answering questions off topic, and aberrant prosody.

2. Reading disability (dyslexia) – difficulty learning the alphabetical code of written language at school age. Dyslexia is often the residual of a developmental language disorder with difficulty making fine auditory discriminations between speech sounds. Most dyslexic individuals eventually learn to read more or less efficiently, but retain difficulty reading pronounceable non-words and, often, poor spelling (dysorthographia). Less frequent causes include visual discrimination difficulties or

poor spelling (dysorthographia). Less frequent causes include visual discrimination difficulties or sequencing problems implicating deficient working memory.

3. Mathematical disability (dyscalculia) – difficulty with mental or written arithmetic, geometry, word problems, or other mathematical operations. Identification of its cause requires detailed neuropsychologic investigation. Attention deficit disorder contributes to dyscalculia and complex arithmetical operations. Visuospatial problems impair not only geometry but also written arithmetic.

4. Dysgraphia – poor handwriting, associated or not with dysorthographia. Either due to an overt or subtle motor deficit or difficulty in learning complex motor skills (dyspraxia). A large sloppy handwriting (dyspraxia) with excellent spelling (superior rote memory) often characterizes ASD.
5. Others – tone deafness, grossly deficient ability to draw or classify can be considered learning disabilities when they interfere with children’s acquisition of required skills.

Kyle Sterrett1 and Amanda C. Gulsrud2 1University of California, Los Angeles, Los Angeles, CA, USA 2UCLA Semel Institute for Neuroscience and Human Behavior, Los Angeles, CA, USA  Definition The developmental approach to intervention draws upon the knowledge of typical development to design treatment objectives for children with autism spectrum disorder (ASD). Child development research informs the developmental processes that determine goals, measure change, and guide treatment practices. The

developmental processes that determine goals, measure change, and guide treatment practices. The main pillars of this approach include the selection of developmentally appropriate targets, individualized instruction by focusing on child preferences and interests, and the incorporation of family needs, values, and preferences into intervention objectives. A number of developmental models exist in the early intervention literature of children with ASD including the Floortime and Developmental

in the early intervention literature of children with ASD including the Floortime and Developmental Individual-difference Relationship models (DIR; Greenspan and Weider 1999), Relationship Development Intervention (RDI; Gutstein and Sheely 2002), Hanen Centre programs (Coulter and Gallagher 2001; Sussman 1999), Preschool Autism Communication Trial (PACT; Green et al. 2010), and Social Communication, Emotional Regulation and Transactional Support (SCERTS; Prizant et al. 2006) models, to name a

Emotional Regulation and Transactional Support (SCERTS; Prizant et al. 2006) models, to name a few. Contemporary behavioral approaches to early intervention for children with ASD, often referred to as Naturalistic Developmental Behavioral Interventions (NDBI; Schreibman et al. 2015), also emphasize developmental objectives and to varying degrees utilize developmental principles (e.g., Joint Attention Symbolic Play Engagement and Regulation (JASPER), Kasari et al. 2006; Pivotal Response

Attention Symbolic Play Engagement and Regulation (JASPER), Kasari et al. 2006; Pivotal Response Treatment (PRT), Koegel and Koegel 2006; Incidental teaching, McGee et al. 1999; Reciprocal Imitation Training (RIT; Ingersoll 2010); the Denver Model, Rogers et al. 2000; and Early Start Denver Model (ESDM), Rogers and Dawson 2010).

Historical Background This treatment approach has its origins in our understanding of how children learn through typical daily social interactions. Teaching during naturalistic, play-based, and developmentally appropriate activities has a long history in the typical early childhood literature to ensure motivation, cooperation, and engagement (Fein and Rivkin 1986; Copple and Bredekamp 2009). In recent years, these principles have also been applied to children with developmental disorders, such

years, these principles have also been applied to children with developmental disorders, such as ASD. Most commonly these interventions focus on the core domain of social communication and include specific emphasis on joint attention, social engagement, and early expressive language (e.g., PACT, SCERTS, RDI, JASPER, Hanen). Several comprehensive treatment approaches have also adopted a developmental framework (e.g., Denver model, ESDM, PRT).

Rationale or Underlying Theory The underlining theory behind developmental treatment approaches is that each child is an individual with corresponding strengths and weaknesses. Not every child has the same profile of development, especially children with a heterogeneous disorder such as ASD. The developmental approach to intervention strives to tailor curriculum to the needs of each child and provide opportunities for learning skills that are appropriate to the child’s current level of

and provide opportunities for learning skills that are appropriate to the child’s current level of functioning as well as scaffolding instruction to more developmentally complex skills within the child’s milieu. A developmental framework for early social-communication intervention pulls from the extensive literature on both incidental teaching (McGee et al. 1985) and the importance of linguistic input to language acquisition (Hoff-Ginsberg and Shatz 1982). This teaching approach is

linguistic input to language acquisition (Hoff-Ginsberg and Shatz 1982). This teaching approach is child-centered and child-directed and involves such strategies as following the child’s motivations and interests, offering choices within activities, responding to child initiations, and expanding on a child’s verbal and nonverbal communicative bids (Prizant et al. 2006; Wilcox and Shannon 1998). Unlike traditional behavioral approaches that are adult-facilitated and stick to a strict hierarchy

Unlike traditional behavioral approaches that are adult-facilitated and stick to a strict hierarchy of program objectives, developmental models strive to follow the child’s interests in a naturalistic learning environment. The hope is that by embedding learning opportunities within highly motivating and natural contexts, children will be more apt to participate and the total amount of intervention or dosage each day will increase. An underlining goal of developmental approaches is to foster a

or dosage each day will increase. An underlining goal of developmental approaches is to foster a deeper connection between the child and a social partner (often the parent) that results in meaningful teaching opportunities.

Goals and Objectives Several common goals exist across early developmental interventions for ASD. These goals include the emphasis on individualized treatment and targeting developmentally appropriate skills. A majority of developmental interventions emphasize social-communication outcomes for children with ASD, with a special importance placed on children becoming effective communicators. Some programs, such as the Walden preschool, also place an emphasis on early interactions with peers.

programs, such as the Walden preschool, also place an emphasis on early interactions with peers. Additionally, there is an emphasis on the child’s emotion regulation abilities and the provision on developmentally appropriate supports for student learning. The SCERTS model emphasizes the need to help the child regulate arousal as a foundation to early intervention. Other developmental models also believe that helping the child reach the optimal level of arousal is an early developmental skill

believe that helping the child reach the optimal level of arousal is an early developmental skill necessary for successful learning (e.g., DIR, JASPER, ESDM). Another common theme is to provide learning opportunities within the natural social context of daily activities. This includes embedding intervention objectives within play-based activities and daily routines of living and providing support and training for parents to generalize treatment objectives to the home environment.

Treatment Participants Developmental approaches are typically applied during the early intervention period for children with ASD. Some interventions have been applied to children as young as 12 months of age (e.g., ESDM and JASPER). Typically, restrictions regarding participation are not made based upon child developmental characteristics, such as cognitive, language, and adaptive functioning. With the increasing emphasis on early detection and intervention, it follows suit that these models

With the increasing emphasis on early detection and intervention, it follows suit that these models would support the development of the youngest children affected by the disorder. Some attempts have also been made to apply developmental models of intervention to older children and adults. The JASPER intervention is a modular treatment that has been tested for efficacy in a wide range of children from toddlers to older nonverbal and school-aged children. Principles of PRT are used across the

from toddlers to older nonverbal and school-aged children. Principles of PRT are used across the lifespan. Overall, participants are typically in the preschool range and so more research needs to be done to assure that children and adults across the lifespan can benefit from developmental treatment approaches. More recently there has also been an increased focus on serving children from diverse and underrepresented backgrounds in some development intervention models such as JASPER and the

and underrepresented backgrounds in some development intervention models such as JASPER and the Parent-Mediated Intervention for Autism Spectrum Disorders in South Asia (PASS), a modified version of PACT (Rahman et al. 2016).

Treatment Procedures Developmental interventions use naturalistic teaching strategies in a variety of settings. The goal is for treatment to be embedded within everyday social experiences; thus, many of the developmental intervention models are play-based. Teaching objectives are embedded within these highly motivating play activities. Research in typical development has shown that children who are allowed to follow their preferred attentional focus see direct benefits on communicative growth

are allowed to follow their preferred attentional focus see direct benefits on communicative growth (Akhtar et al. 1991; Tomasello and Farrar 1986). Thus, it is believed that children with ASD will also benefit from having more autonomy in the choice of activities and more opportunities to lead the interaction. Developmental interventions incorporate the use of a wide range of treatment settings including clinics, schools, and the home. Many of these treatments are adapted for use across

including clinics, schools, and the home. Many of these treatments are adapted for use across multiple settings. For example, the ESDM can be applied in center-based preschools, inclusive preschools, and the home environment. PRT has been applied and has empirical support for its use across these settings. JASPER has been validated in randomized controlled trials across a number of settings including clinics, homes, inclusive and center-based preschools, and community settings. Instruction is

clinics, homes, inclusive and center-based preschools, and community settings. Instruction is also delivered using a variety of methods. Many developmental models will have a portion of the instruction delivered in a 1:1 teaching model with a trained therapist and the child (e.g., ESDM, PRT, JASPER, PACT, SCERTS) and also group settings (e.g., Denver Model, JASPER). Most recent interventions involving parents utilize to some degree what is known as a parent-mediated model. In this model, the

parents utilize to some degree what is known as a parent-mediated model. In this model, the parent and child are interacting together with a trained clinician who serves as an active “coach” for these social interactions so that the parent receives immediate feedback.

Efficacy Information Several developmental early intervention programs have been tested for efficacy. In recent years, there has been a rapid increase in the methodological quality of interventions testing developmental approaches and there is promising evidence of improvement using these models. One frequently studied approach is the Denver Model and ESDM by Rogers and colleagues. To date, they have numerous peer-reviewed papers on the efficacy of this intervention. The early work using this

have numerous peer-reviewed papers on the efficacy of this intervention. The early work using this model utilized a within-subject pre-/postdesign, which as a method may not be adequate for determining effective treatments. Later work involved some quasi and true experimental designs including one randomized controlled clinical trial (RCT) of ESDM, which suggests evidence of improvement in the domains of cognition (DQ), language, and adaptive functioning (Dawson et al. 2010). A more recent RCT

of cognition (DQ), language, and adaptive functioning (Dawson et al. 2010). A more recent RCT of a parent-mediated ESDM approach found no treatment effect on parent and child outcomes (Rogers et al. 2012). Another treatment approach that has gained scientific support is PRT. Utilizing single-subject methodology, PRT has been documented to improve social skills, disruptive behaviors, responsivity, language, and other social behaviors (e.g., Koegel and Frea 1993; Koegel et al. 1992a, b). Recent

language, and other social behaviors (e.g., Koegel and Frea 1993; Koegel et al. 1992a, b). Recent RCTs of PRT have been conducted finding increased frequency of verbal utterances and mean length of utterances (Hardan et al. 2015; Mohammadzaheri et al. 2014). One study compared PRT to the Picture Exchange Communication System (PECS) and showed no treatment differences, but both groups increased over time on parent-report and standardized measures of expressive language (Schreibman and Stahmer

over time on parent-report and standardized measures of expressive language (Schreibman and Stahmer 2014).

Studies by Kasari and colleagues have shown effectiveness for JASPER, a developmental social-communication intervention for toddlers and preschoolers with ASD. In several RCT trials, children randomly assigned to interventions targeting core deficits of ASD including joint attention and symbolic play made significant gains in joint attention initiations and symbolic play, respectively (Kasari et al. 2006), and also both made significant gains in expressive language at a follow-up visit 1 and 5

al. 2006), and also both made significant gains in expressive language at a follow-up visit 1 and 5 years later compared to participants in a control condition (Kasari et al. 2008, 2012). Similarly, in several RCT designs of toddlers and preschoolers with ASD and their caregivers using a parent-mediated approach, children improved in their joint attention, play, and joint engagement with their caregivers (Kasari et al. 2010, 2014, 2015). JASPER has also been tested in a number of deployment

caregivers (Kasari et al. 2010, 2014, 2015). JASPER has also been tested in a number of deployment trials where the intervention was carried out by teachers and community providers, not trained interventionists, but showed comparable effects to the clinic based trials (Chang et al. 2016; Kaale et al. 2012; Shire et al. 2016). SCERTS has almost 30 years of clinical practice, and recent research into its efficacy has been conducted through the Early Social Interactions Project (Wetherby et al.

into its efficacy has been conducted through the Early Social Interactions Project (Wetherby et al. 2014). Effects were seen on children’s social communication, receptive language, and adaptive functioning. Similarly, DIR/Floortime has recent evidence supporting its efficacy. Three RCTs have been conducted in preschool aged children with some effects seen on children’s broad social communicative functioning, regulation, and autism symptomology (Casenhiser et al. 2013; Pajareya and

functioning, regulation, and autism symptomology (Casenhiser et al. 2013; Pajareya and Nopmaneejumruslers 2011; Solomon et al. 2014). The first two trials have some methodological issues that limit the interpretability of the findings, but the most recent trial found that children receiving the DIR/Floortime-based treatment saw improved diagnostic classification, but no effects were observed on standardized language or cognitive measures. The PACT intervention has been tested in two recent

on standardized language or cognitive measures. The PACT intervention has been tested in two recent RCTs, one which took place in a clinic setting (Green et al. 2010) and another in community settings in south Asia (Rahman et al. 2016). The clinic-based intervention found positive effects on children’s initiations and shared attention, while the community study found effects only for initiations.

These studies and others like them illustrate the trend toward efficacious treatment in ASD research. Currently, researchers are focused on identifying the moderators of interventions and the exploration of which treatments work best for different populations of children with ASD. There is a clear need for more research into this area to establish stricter guidelines for “best practices” in autism intervention. Although there is promising evidence for the efficacy of developmental approaches

intervention. Although there is promising evidence for the efficacy of developmental approaches in early intervention for ASD, these developmental models need to be tested against other approaches of early intervention (e.g., DTT) to better answer the question of which treatments work best for the wide range of children affected with the disorder. A number of these comparative efficacy trials are currently underway.

Mechanisms of Change In recent years, there has been a heightened focus on what are often referred to as the active ingredients of developmental interventions. Active ingredients are those factors within an intervention that are driving the treatment effect on a specific outcome. Attempts have been made to isolate the active ingredients of both PACT and JASPER. In the PACT trial, ADOS-g scores were mediated by parental synchrony and children’s initiations (Pickles et al. 2015) and in JASPER

were mediated by parental synchrony and children’s initiations (Pickles et al. 2015) and in JASPER one strategy, Mirrored Pacing, mediated the treatment effect on children’s joint engagement (Gulsrud et al. 2015). Further efforts to understand the mechanisms of change of efficacious developmental interventions will continue as the evidence base grows.

Outcome Measurement Many of the early developmental interventions target social communication in our youngest children affected with ASD. It follows suit that outcome measures for these interventions would tap into domains of social and communicative functioning. Broadly, there are two types of outcome measures to consider, those which are proximal and distal to the intervention procedure. Proximal outcomes are directly targeted by the intervention and distal outcomes are downstream effects

outcomes are directly targeted by the intervention and distal outcomes are downstream effects that are expected but not explicitly targeted. The JASPER and PACT interventions have proximal outcomes such as joint engagement and shared attention that are directly targeted in the interventions, and it is expected that these changes in proximal outcomes will lead to distal effects on expressive and receptive language. It is important that both proximal and distal outcomes are carefully selected. An

language. It is important that both proximal and distal outcomes are carefully selected. An intervention can have strong effects on proximal outcomes but show no effect on distal outcomes, or can show change across both. Important to note is that distal effects cannot be seen without first moving proximal outcomes. The importance of follow-up and long-term measurement is therefore a strong point of emphasis in developmental interventions although the cost of measuring data over time and issues

of emphasis in developmental interventions although the cost of measuring data over time and issues of attrition often limit the feasibility of long-term follow-up periods. The measures used in developmental interventions vary widely. They include standardized measures of language, cognitive ability, and autism symptomology (often distal outcomes) such as the Mullen Scales of Early Learning, the Reynell Developmental Language Scales (Reynell 1977), and the Autism Diagnostic Observation Schedule

Developmental Language Scales (Reynell 1977), and the Autism Diagnostic Observation Schedule (ADOS; Lord et al. 2000). Parent reports include measures of language and adaptive functioning such as the MacArthur-Bates Communicative Development Inventory (Fenson et al. 1993) and Vineland Adaptive Behavior Scales (Sparrow et al. 2005). A number of interventions utilize idiosyncratic measures (often proximal outcomes) that code for specific behaviors targeted by the intervention such as engagement,

outcomes) that code for specific behaviors targeted by the intervention such as engagement, play, and gesture use; these coding measures are usually in the context of unstructured or structured play interactions between adults and children. New standardized observational measures, such as the Brief Observation of Social Communication Change (BOSCC; Grzadzinski et al. 2016), which are more sensitive to subtle changes in the often complex social communication behaviors of children, are also

to subtle changes in the often complex social communication behaviors of children, are also beginning to emerge.

Qualifications of Treatment Providers Most developmental interventions require specific training to implement. Trained clinicians carry out the models described above with checks for fidelity to instruction standards occurring at regular intervals for several programs (e.g., PRT, ESDM, JASPER). Hanen requires speech and language therapists to implement the intervention. Many treatments also involve the training of parents to generalize program goals to the home setting. Some models also

involve the training of parents to generalize program goals to the home setting. Some models also conduct trainings to extend instruction to teachers and community providers (e.g., PRT, JASPER, PACT).

See Also ▶Affective Disorders (Includes Mood and Anxiety Disorders) ▶Applied Behavior Analysis (ABA) ▶Autism Diagnostic Observation Schedule (ADOS) ▶Autism Diagnostic Interview-Revised (ADI-R) ▶Cognitive Behavioral Therapy (CBT) ▶Early Intervention ▶Early Start Denver Model (ESDM) ▶Hanen Programs ▶Incidental Teaching ▶Joint Attention Symbolic Play Engagement and Regulation (JASPER) ▶Mullen Scales of Early Learning (MSEL) ▶Naturalistic Developmental Behavioral Interventions ▶Parent-Mediated

of Early Learning (MSEL) ▶Naturalistic Developmental Behavioral Interventions ▶Parent-Mediated Intervention ▶Pivotal Response Treatment (PRT) ▶Relationship Development Intervention (RDI) ▶SCERTS Model ▶Social Communication ▶Speech and Language Therapy ▶Vineland Adaptive Behavior Scales  Jennifer S. Beighley and Johnny L. Matson Department of Psychology, Louisiana State University, Baton Rouge, LA, USA  Definition Developmental milestones are a set of behaviors, skills, or abilities that are

LA, USA  Definition Developmental milestones are a set of behaviors, skills, or abilities that are demonstrated by specified ages during infancy and early childhood in typical development. Developmental milestones are often presented in lists broken down by ages, beginning around 1–3 months of age and progressing through approximately 5 years of age. The Centers for Disease Control and Prevention (CDC) provides easily accessible information through their website (2010). Several categories of

(CDC) provides easily accessible information through their website (2010). Several categories of skills are often focused on including vision and hearing, social, cognitive, language, motor, and self-help. Parents, day-care providers, teachers, child psychologists, and pediatricians often note emerging concerns regarding development when infants and children fail to reach developmental milestones on time. While some variation is to be expected among individuals, developmental milestones are

on time. While some variation is to be expected among individuals, developmental milestones are used as guidelines to assist in the identification of developmental delays, including autism spectrum disorders. When an infant or child is not reaching developmental milestones or is significantly delayed in meeting them, further assessment and evaluation should be completed. Early diagnosis and early intervention for autism are important for best outcomes. Skills that may be deficient in early

intervention for autism are important for best outcomes. Skills that may be deficient in early development for individuals with autism spectrum disorders include social behavior, joint attention, visual orientation, orienting to noise, response to name, imitation of movement or sounds, and language acquisition including both receptive and expressive language (Watson et al. 2003).

See Also ▶Developmental Delay ▶Early Diagnosis ▶Early Intervention ▶Expressive Language ▶Imitation ▶Joint Attention ▶Milestone ▶Receptive Language  Iris Charlotte Tjaarda1, David Skuse2 and Kirstin Greaves-Lord3,4,5 1University of Applied Sciences Leiden, Leiden, Zuid-Holland, The Netherlands 2UCL Great Ormond Street Institute of Child Health, London, UK 3Jonx Department of (Youth) Mental Health and Autism, Lentis Psychiatric Institute, Groningen, The Netherlands

4Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC, Rotterdam, The Netherlands

5Yulius Autisme, Dordrecht, The Netherlands  Abbreviations | ADHD | Attention Deficit Hyperactivity Disorder | |---|---| | ADI-R | Autism Diagnostic Interview – Revised | | ADOS | Autism Diagnostic Observation Schedule | | ASC | Autism Spectrum Condition | | ASD | Autism Spectrum Disorder | | DSM-IV-TR | Diagnostic and Statistical Manual of the American Psychiatric Association, 4th Revision, text revision |

| DSM-5 | Diagnostic and Statistical Manual of the American Psychiatric Association, 5th Revision |
| ICD-10 | International Classification of Disease (World Health Organization) 10th Revision |

| PDD | Pervasive Developmental Disorder | | RRBI | Restricted Repetitive Behaviors and Interests |  Description The Developmental, Dimensional and Diagnostic Interview (3Di; Skuse et al. 2004) is a standardized, computer-based diagnostic interview in which individual scores of children from the age of 3 years old and upward in both clinical and normal populations with suspected autism spectrum disorder (ASD) can be scored in terms of their severity, frequency, and comorbidity. It was

disorder (ASD) can be scored in terms of their severity, frequency, and comorbidity. It was specifically designed to be easy and practical in its use, requiring minimal training and automation of reporting. The interview offers a dimensional assessment across the full range of autism spectrum characteristics. Subjects, whom the 3Di was primarily developed to assess, were children of school age with normal-range cognitive abilities. With simple modifications, the 3Di can also be used with

age with normal-range cognitive abilities. With simple modifications, the 3Di can also be used with younger children (from 2 years of age) as well as those with moderate or severe mental retardation. Algorithms can automatically adapt the scoring system for a particular age-group or to allow for a nonverbal subject. If employed for the assessment of preschool-aged children, or those in late adolescence and beyond, some rephrasing of questions will be required. In the case of older adolescents

and beyond, some rephrasing of questions will be required. In the case of older adolescents or adults, the interviewer would ask about a specific time when that individual was of an age when the domain of content applied. With minor modification, the interview can be administered as part of the diagnostic evaluation of adults. The 3Di was developed primarily to assist clinicians to make highly reliable diagnoses. It is recommended to use the 3Di in combination with independent observational

reliable diagnoses. It is recommended to use the 3Di in combination with independent observational assessments, such as the Autism Diagnostic Observation Schedule (ADOS; Lord et al. 2000). Validity was established in comparison with the ADI-R, and the ADI-R diagnostic algorithm can be emulated (Skuse et al. 2004). A recent modification enables the DSM-5 ASD criteria to be employed in diagnostic decision-making. The answers to the questions on the 3Di are provided by parents and scored by a

decision-making. The answers to the questions on the 3Di are provided by parents and scored by a trained clinician (Skuse et al. 2004). The interview contains 183 questions concerning demography, family

measures, clinicians are unable to document whether an intervention was or was not effective (Hedge 1988).

Finally, clinicians must determine whether or not the targeted behavior has been mastered. Mastery of a behavior includes generalization of a targeted behavior to outside of the clinical setting. To facilitate generalization, a variety of stimuli should be used when teaching the targeted behavior, and the audience with whom the therapy targets are practiced should be varied (Roth and Worthington 2001).

Efficacy Information The National Outcomes Measurement System (NOMS), organized by the American Speech-Language-Hearing Association, is a national database comprised of outcome data from speech-language pathologists (SLPs) and audiologists working with adults and children in school and health-care settings. The results from this database indicate that speech therapy is effective at modifying, minimizing, and/or resolving communication disorders. In the area of adult treatment, intervention is

and/or resolving communication disorders. In the area of adult treatment, intervention is considered effective if there is measurable change from admission to discharge. Measurable changes for patients were found in the areas of memory, swallowing, motor speech, language comprehension, and expression (American Speech-Language-Hearing Association n.d.-b).

In the area of child treatment, children must make demonstrable progress in targeted areas. Results from prekindergarten data found that more than half of the children made demonstrable progress following SLP intervention in the areas of articulation/intelligibility, cognitive orientation, pragmatics, spoken language comprehension, spoken language production, and swallowing. This included children with lower functional communication and/or swallowing abilities. Thus, the data suggests that

with lower functional communication and/or swallowing abilities. Thus, the data suggests that speech therapy is effective, as demonstrated by measuring change, in treating both adult and child communicative disorders (American Speech-Language-Hearing Association n.d.-a; American Speech-Language-Hearing Association n.d.-b; Mullen and Schooling 2010).

Outcome Measurement To determine outcome measurements, clinicians should compare pretreatment baseline measures to posttreatment measures and/or compare scores from admission and discharge. The differences in pretreatment and posttreatment measures may be used to determine the amount of change that has occurred as a result of treatment (Hedge 1988). The National Outcomes Measurement System, organized by the American Speech-Language-Hearing Association, uses functional communication measures to

by the American Speech-Language-Hearing Association, uses functional communication measures to describe the change in an individual’s functional communication and/or swallowing ability over time. These measures are based on disorder-specific scales (Mullen and Schooling 2010).

Qualifications of Treatment Providers Qualifications needed to provide speech therapy services in the United States include Certification of Clinical Competence (CCC). This certificate, granted by the American Speech-Language-Hearing Association, requires a master’s degree from an accredited graduate program, a passing score on the national Praxis exam (a certification examination written and administered by the Educational Testing Service), and completion of a 9-month clinical fellowship

administered by the Educational Testing Service), and completion of a 9-month clinical fellowship under the supervision of a certified speech-language pathologist. Most states license speech-language pathologists. State licensing requirements are most often comparable, although they may not be identical, to the qualifications for the Certificate of Clinical Competence. Speech-language pathologists licensed in other states must apply for licensure in the state in which they are practicing

licensed in other states must apply for licensure in the state in which they are practicing (American Speech-Language-Hearing Association n.d.-c).

Speech/Communication Disabilities Synonyms Communication disorder; Language impairment/disorder; Speech impairment/disorder

Definition Speech/communication impairments are among the core features of autism spectrum disorders (ASD). Although enormous variability in the development of speech and language is observed in individuals with ASD, even those who have high cognitive and language abilities exhibit some type of communication disability. Deficits can occur at the nonverbal level (e.g., gestures, facial expressions, eye gaze), paralinguistic level (e.g., prosody, intonation), and linguistic level (e.g.,

eye gaze), paralinguistic level (e.g., prosody, intonation), and linguistic level (e.g., language, speech). Communication deficits in the social use of speech and language are particularly salient. Research suggests that a subset of children with ASD also have grammatical deficits similar to children with specific language impairment. In addition, speech sound disorders are evident in a subset of children with ASD. Approximately 20–40% of individuals with autism never develop spoken language,

children with ASD. Approximately 20–40% of individuals with autism never develop spoken language, and about 20% exhibit a loss of language skills as toddlers, also known as language regression.

Aspects of communication that are relatively preserved in individuals with ASD include segmental phonology (i.e., the system of speech sounds), syntax, and morphology (i.e., the form or structure of language). Areas of relative difficulty include nonsegmental speech production (e.g., prosody, intonation, stress patterns, vocal quality), semantics (i.e., meaning), and pragmatics (i.e., social use of language).

Categorization The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5; American Psychiatric Association 2013) includes four categories of communication disorders: language disorder, speech sound disorder, childhood-onset fluency disorder, and social (pragmatic) communication disorder. Speech/communication disabilities can be associated with developmental disabilities and syndromes, such as autism spectrum disorders.

Epidemiology Speech/communication disabilities are core features of ASD. According to Fombonne’s (2009) review, the prevalence for all autism spectrum disorders (previously referred to as pervasive developmental disorders) is estimated at 60–70 per 10,000.

Natural History, Prognostic Factors, Outcomes Communication delays and deficits are often the first indicators of ASD. For example, children later diagnosed with ASD show a lack of interest in faces, voices, and social interactions as infants. Later in development, children with ASD may fail to understand or produce communicative gestures (e.g., pointing) and may be delayed in babbling, vocalizing, and speech development. Lack of communication skills is one of the most significant stress

and speech development. Lack of communication skills is one of the most significant stress factors for families of children with ASD. The speech/communicative outcomes of individuals with ASD are extremely variable. About 20% of children with ASD exhibit a regression in speech and language skills during their second year of life. About 40–50% never develops functional speech except for perhaps a few single words (although this percentage may be decreasing due to the positive effects of early